New Daily Persistent Headache

New Daily Persistent headache can change a life dramatically.
New Daily Persistent headache can change a life dramatically.

New Daily Persistent Headache (NDPH) is characterized by the sudden onset of intense head pain that lasts for a minimum of three months. The pain is typically tightening, and non-pulsating, and will increase and decrease throughout the day and night, but does not leave the patient entirely. Think of a bright light controlled by a dimmer switch. It gets brighter and brighter (intensifying the pain) and then dimmer. And then back again. But it never gets shut off completely. New Daily Persistent Headache is not generally aggravated by physical activity. In fact, some patients find that lying down to relax may actually make the pain unbearable.

It's Not a Tumor! Classic Arnold Clip

My Struggle with New Daily Persistent Headache

March 18, 2005 started off like any other day. I remember so clearly what changed it. At 2:20 in the afternoon, a headache fell on to me, like a blockof cement. I rarely experienced headaches. In my career as a Licensed Massage Therapist, I specialized in chronic pain and migraine treatment, so I figured this was a migraine, and that it would go away. I took Advil and struggled through the rest of the day. I took Aleve and I struggled through the night.

Two weeks and several doctors later, I found myself in the ER, hearing words tossed around me like TUMOR and BLEED. I had scans and IV medications. I did not have any answers, but I still had a headache.

Three months later, my headache was still going strong. During this time, I had very few low pain days. Most of the time I was walking around, caring for my children with full-blown migraine level pain. I tried various migraine medications without success. Finally, I found a specialist who was able to diagnose the headache as New Daily Persistent Headache. He knew exactly what I had. He knew how to treat it. He was optimistic.

The best medication, in his opinion, for New Daily Persistent Headache was not an option for me, due to family medical history. Instead, I participated as a guinea pig in a research study for a new medication. I was now armed with a plan and a purse full of new painkillers.

I recently passed my three-year anniversary. No, I did not have a party to celebrate my cure, because I have yet to find it. But I didn’t throw a pity party either.

So what happened to my doctor’s plan? I had some moderate, temporary relief from pain, then developed an ulcer (possible side effect) and chest pains. I was promptly booted out of the study. We have not yet been able to find a medication or combination of medications to give me lasting or even consistently temporary relief. This is not at all uncommon with New Daily Persistent Headache..

I am lucky, though, in a sense. I once went 17 days without a high pain headache. Now, three years later, the headache is often (but not constantly) with me and I am a little secretive about it. I won’t mention it unless I am having a high pain day and have to struggle through my daily responsibilities as a mom. Occasionally, like this past month, I will have entire weeks go by with moderate to high pain and very few low pain days. I will also have the pleasure of up to two weeks with no pain or little pain at all. This usually happens during the cold, dry winter.

So why am I lucky? There are some people with NDPH that rarely have a low pain / no pain day. There are some that cannot work, and children and teens who cannot handle school due to the pain. I believe that I have developed an extremely high tolerance for headache, simply because I had no choice. There are others like me, too. They have made the decision that until they find a treatment that works, they are just going to continue with their life as if they didn’t have a headache at all. I am able to work through a headache that would have taken me down for the day three years ago. And it is not killing me. What doesn’t kill you makes you stronger, right?

New Daily Persistent Headache Triggers

Internal Headache Triggers:

  • Chronic fatigue, too little sleep
  • Emotional stress, letdown after stress
  • Hormonal Fluctuations

External Headache Triggers:

  • Weather and seasonal changes
  • Travel through time zones
  • Altitude
  • Skipping or delaying meals
  • Sensory stimuli (such as flickering or bright light, odors including perfume, chemicals or smoke, heat and loud noises)
  • Medications (including but not limited to nitroglycerin, tetracycline, high doses of Vitamin A, certain antidepressants and blood pressure and medications)

Dietary Triggers:

  • Nutrasweet (aspartame)
  • Nuts
  • Bananas
  • Alcohol
  • Soy
  • Chocolate
  • Avocado
  • Aged cheese
  • Processed meats
  • Onions
  • Caffeine
  • Fermented foods

New Daily Persistent Headache: Triggers

If you suffer from headaches of any kind, you should be aware of what triggers an attack. It has taken me a very long time to get this squared away, but I now know that I cannot eat a single M&M or piece of chocolate, or I am likely to trigger a long episode. Unfortunately, red wine is another trigger. No, my life is not the same without them. Luckily, caffeine is not a trigger (for me), so I can still enjoy and obsess over my beloved coffee!

What New Daily Persistent Headache Is NOT

It is not a migraine. This is precisely why New Daily Persistent Headache is so difficult to treat. It is typically treated with migraine specific medication and it works for only a small percentage of people. Although I appreciate the advice that everyone offers (I have tried every possible avenue it seems), what works for a typical migraine may not work for others or me like me. I have probably tried it. I think in general people with NDPH are a little tired of people saying, “well I have the worst migraines, I get two a month sometimes but…” Please don’t say that to someone who suffers from NDPH. Keep in mind that they have had a migraine quality headache for months at a time, possibly for years. Trust me, there is not one of us out there who has not tried every possible dosage of Imitrex.

Here are a few things to keep in mind when thinking about headaches, from the book Conquering Headache by A. Rapoport, F. Sheftell and S. Tepper (my personal doctors). These are the basic FACTS about headache that they feel everyone should be aware of:

  1. Headache is not all in your head, but often has physiological causes.
  2. Sinus infections and allergies are not frequent causes of headache.
  3. Stress is NOT a cause of headache but rather a modulator of headache.
  4. Most headache sufferers do not have temporomandibular joint (TMJ) syndrome.
  5. More medication for the acute treatment of headache is usually not better treatment. In many cases, less medication, taken optimally and early, may offer greater relief.

Alternative Therapy for New Daily Persistent Headache

There are countless alternative therapies to explore. I have tried a good deal of them myself. I had moderate success with some of them and found some completely useless. Each headache sufferer is different and will respond to various therapies and medications uniquely.

  • Chiropractic
  • Massage Therapy (I specifically suggest finding a therapist that specializes in Trigger Point Therapy or Neuromuscular Therapy)
  • Acupuncture
  • Naturopathic Medicine
  • Biofeedback
  • Nutrition counseling
  • Physical Therapy
  • Herbal Remedies


If you or someone you love suffers from New Daily Persistent Headache, keep searching for a solution. I highly recommend checking out one of the online support groups. Support from people who understand what you are going through is priceless. I am confident that someday I will either find something that works for me, or simply wake up one morning, and the headache will go from me as quickly as it arrived on March 18, 2005. Until then, I will continue to wake up every morning and thank God for my beautiful life, my healthy children, my loving family and for the strength to keep on pushing through.

If you would like to read more about NDPH, follow my story or share your own, please visit my blog: Living with NDPH. I was inspired to start it by the huge response I have received from this article, to enable me to share more detailed information and communicate with others who are suffering.

NDPH - Update September 2012

It's been over seven years now since my headache started. Nearly two years ago, I was diagnosed with Lyme Disease. My doctor (and I) suspected that a tick bite in early spring (about two weeks previous to the onset of the headache) was what triggered my headache.

I have gone through so much with this painful headache, but now I am doing much better. I still have a headache some days, but it is low on the pain scale. Occasionally (2-3 times per month) the pain escalates to a migraine level of pain.

If there is any chance that you could have Lyme Disease, please seek out a Lyme Literate Medical Doctor. I know for a fact that I am not the only person diagnosed with NDPH who later discovered that I had Lyme. If it is indeed Lyme that is causing your headache, treatment is available and you can recover!

If you are in need of support in this difficult journey, please visit my blog (listed above). There are tons of ideas and treatment options available, as well as many compassionate people who know exactly what you are going through.

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Comments 155 comments

FreakyV profile image

FreakyV 21 months ago from Canada

This left on one of my hubs by accident it seems. It was too well written to not track down it's intended home.

Mari 2 days ago

Hi Lindsay and Amy I really hope you reply even tughoh it has been 2 years since you've posted on here I'm so glad to have found this site. My name is Nichole and I am almost 23 years old, I have suffered with NDPH since I was 16. I was a Sophomore in high school, it was near the end of 2006 when I got sick with bronchitis and the flu and coughed and coughed and noticed I had a really terrible headache with it. Once the sickness went away I noticed that the migraine, that pain in my head that had been so foreign to me prior to this, had not gone away, and still has not to this day I had to be home schooled and quit all of my sports I was a part of My friends went on with their lives and forgot about me while I had a constant 24/7 pain that I could not get rid of no matter how hard I tried or how much it killed me, physically and mentally. We began with Chiropractors, decompression machines, adjustments, etc. I traveled hours to probably 20 different Chiropractors that all said that they knew what I had and exactly how to treat it. I've tried natural supplements, over the counter medications, 6 Occipital nerve blocks in the back of my head, massage, diets of no wheat, no gluten, no sugar, vegan only, all with no progress. My family understands the pain and how I can be ok one minute but then pick up something slightly too heavy, walk a little too fast, sit down a little too hard and I will have to be in my room with blankets over my windows and absolutely no sound because the pain is so unbearable. It is so frustrating because I too feel like a burden, like ok you have a headache so what? Why can't you stay out late or get up early or work long shifts or run around and be active? But it is so much more than a headache It's become a way of life and although I think I handle it well I know that deep down I am depressed and deeply saddened by it because anytime I stop to think about it or talk to anyone about it I cry instantly. Lindsay, I too have tried the things you have with no help and at Cleveland Clinic where they did my nerve blocks they told me about the program where you stay there for an amount of time. My option they told me about when staying there was a few weeks, they would put me on all these medications and steroid medications, have physical therapy and counseling as well. They also said the FDA would soon be approving the Botox injections, I'm sorry those did not help you either NDPH has altered my life drastically, I can't work as much, I can't run around and just be free, I can't take a full load of classes at a time Basically I just want to thank you for having this site Amy, it is really more helpful than you know, just knowing that I'm not the only one to suffer from this and that I'm not the only one that has this pain to think about every single second of every day Bless you and bless all your readers, may you all find relief from the pain -Nichole


Kasey Hinkle profile image

Kasey Hinkle 2 years ago from Germansville, Pennsylvania

Finding this page makes me want to cry.. I have felt so hopeless, so depressed, all over headaches. Over the years, i am not sure if i ALWAYS have a headache or not, but i do have an annoying headache that develops mostly every day. Eye pain, now jaw pain and neck pain seems to worsen with how much of a headache it is. I have seen one neurologist, i have had numerous mri's. None done with contrast, yet. All apparently "normal". Unless doctors miss something? My first mri was in 2006..

I just always have headaches and i have told my neuro that it kinda seemed like it was always there .. All he did for me was give me elavil, which might have helped a little, and iron infusions for low ferritin. I was going to get IV for migraine/headaches but stopped seeing him. I am considering on going back to one, just afraid too. Never had a spinal tap yet or my neck and jaw thoroughly checked out... Have a script to get a neck xray.

I have been having issues for the past many months and i could not get what was wrong. I found out i have lyme through igenex testing when the elisa from my doc was negative. Could my headache be from that.. Lyme?!

It feels good to know i am not the only person who always seems to have a headache.. Tension or pounding. I don't know where to turn from here except find a great LLMD to treat this lyme. Other than that i want to get my neck and jaw checked out, but i think all this neck and jaw achiness i now have is lyme related. I wanted to see a chiro butwas warned to be careful with who i see because of lyme.

I would love any advice.. I am not sure if i exactly have npdh or not but this post really does give me hope.. Thank you


innerspin profile image

innerspin 4 years ago from uk

My son experienced this type of headache for about seven months. The neurologist considered it to be ndph and tried a couple of types of pills. The second lot gave my son really bad nosebleeds, so he stopped taking them, but wierdly the headaches stopped that same week. Interesting to read this hub and its comments.


antonrosa profile image

antonrosa 4 years ago from USA

A very interesting read for sure!


Jill Ashley 4 years ago

Hi Amy. I admit I wasn't able to read through the entire post here, but I suffer 24/7 from something called Migraine Associated Vertigo and I am also a mom of 2. somedays are tearful, others not so bad. I recently came across a book called Eat to Live and have listed to a podcast by Dr. Joel Furhman called Banish Your Headaches. He has a totally different approach to things and I will be starting his plan in April. Please give it a read and see what you think. Here is the link to the podcasts and you just have to scroll down the left side to find the Banish Headaches one. Hope this info may be helpful to you. I have tried many things as well and this will be my last ditch effort to get my health back. Blessings to you. http://www.drfuhrman.com/VoiceAmerica/nutritional_...


amy jane profile image

amy jane 4 years ago from Connecticut Author

I didn't have much luck with chiropractic either, Steve. i think it can help manage the pain and keep the rest of your body feeling good, but as a cure for NDPH, I highly doubt it. I have heard several people say they have had success with Nemanda. I hope it continues to help you.


Steve 4 years ago

Good look on a chiropractic solution. I have been to multiple chiropractors and they have not helped relieve my headaches. Currently taking Nemanda which seems to help.


Santa Barbara Chiropractor Paul Zemella 4 years ago

People around the world continue to turn to chiropractic care for headache problems. It was estimated in 1995 by the National Institutes of Health that already about 48 million people in the USA used chiropractic treatment, and the numbers around the world are growing. A recent trial done for a PHD thesis at Macquarie University, showed that 60% of migraine sufferers had a reduction in their symptoms during the course of the treatment. They reviewed headache chiropractor and other chiropractic services since 1923, and found a success rate between 72% and 90%. The benefits at times seemed to last for years after the treatments.

Chiropractic services seem to be most successful in the treatment of back problems, headache and migraine. In a study published in 1995 that related to tension headache, in the Journal of Manipulative and Physiological Therapeutics. It found that headache chiropractor care did provide some benefits.

Chiropractic services deals with subluxations (misalignments of vertebrae causing nerve irritation) anywhere along the spinal column, not just in the lower back. Sometimes the vertebrae of the spine become misaligned or lose their range of motion for one reason or another. This misalignment puts pressure on nerves leading to and from the brain. A chiropractor helps put them back in place by using gentle and highly skilled adjustments.

Going to a headache chiropractor services is a safe and effective way to treat headaches or migraines without drugs. The idea behind chiropractic is not that the condition itself is treated, but that the body is able to heal itself. Some people have dramatic results, and become completely headache free. Some migraine sufferers find complete relief. Others find relief simply from some symptoms or after effects of the migraine attack. The best thing to do is find a chiropractor that you’re comfortable with, and track the results of the treatment over time.

Cautions:

There are three things to remember when considering headache chiropractor treatment. First, always talk to your doctor and let her know what you’re doing. You especially need to see your doctor if you’re having new symptoms. Second, choose your chiropractor carefully. Third, remember that headache chiropractor treatment is not a treatment of conditions. It helps the body heal itself. That means that chiropractic care often goes along with other treatments and general healthy living.


Steve 4 years ago

Addendum to my comment just posted. Another method I've used to prevent and relieve headache is to take opportunities to laugh. As the Bible says "A merry heart does good like medicine." Once again, it is the way we are wired.


Steve 4 years ago

My deepest sympathy for all chronic headache sufferers. I pray God will heal you or lead you towards relief. I essentially have had NDHP for decades. I have been to dozens of doctors of different types (medical, chiropracic) with various specialties, have taken many different drugs, and have had many tests. I could spend hours on my headache history but can't now. I will highlight solutions that have worked for me Suffices to say that I have had two septoplastys and have taken many drugs. The surgeries helped but did not relieve. I was using Ambien to help me sleep. I discovered Ambien was causing me to be susceptible to migraines. I also noticed that if I took an additional dose of Ambien upon waking in the middle of the night, a nasty headache or migraine was certain. After switching to Lunesta, I had much fewer migraines. When I felt a migraine coming on, I would take 400 mg of ibupropen and lay down with an ice pack on my head. Usually within 30-40 minutes after taking the ibupropen and applying the ice pack, most of my migraine was relieved. I have been off all drugs for about 2 1/2 months. I believe my body and sleep are being restored to normal because I am off drugs. That is one reason why my headaches are much better. The other reasons are avoidance of triggers: weather changes, allergens, high stress. In addition, I relax several times per day and sleep on my side at night. I still have chronic headache that is worse in the morning but often dissipates to low level at night as long as I avoid triggers. Laying down and applying an icepack helps relieve the headache. I believe I still have daily headaches because I am unemployed which is causing some stress and is probably disturbing my sleep. Our bodies and souls (mind, will, emotion) were not engineered to undergo continuous periods of stress, just as the lily was not engineered to undergo extremes of weather without damage. Do some research on neuropeptides and stress and you'll see what I mean. I truly believe that when I am fully able to obey what the Bible says (fear not, don't be anxious, pray, trust God completely, relax and be at peace, read the Word) and take excellent care of my body and soul, the daily headaches will disappear. I sincerely hope this helps. :)


Aradhana 5 years ago

Hi Amy ,

Its good to hear that you are feeling better again.

I have had NDPH since 9/8/08. It has been more than three years since the headaches with dizziness started and this month has been very bad with the pain accompanied with dizziness. I have my appaointment with my neurologist this friday and I will ask him about Lyme disease.Your story gives me hope that someday I will find the reason for my headaches and be pain free


amy jane profile image

amy jane 5 years ago from Connecticut Author

Hi Sora - Thank you for sharing your story. I'm so happy when I hear that someone diagnosed with NDPH has found a cure for their pain. I hope that your story can help someone else.

Hollie and Al - I'm so sorry to hear of your struggle. I wish I had some answers for you or could help in some substantial way. I just know from many years of dealing with this that the answers are often different for everyone. For me, treatment for Chronic Lyme Disease has helped immensely. I believe that Lyme is what caused my NDPH almost seven years ago this March. I am not headache free - yet. I am still hopeful. And I am functional at this point.

At the worst of my pain, I found writing very therapeutic also. It kept me going many days, as did finding people online who shared my pain. Keep looking for a cure. Keep searching. I know how frustrating it can be - I've tried almost all the treatments you mentioned as well with no results. I would give up for years at a time - but that was never a good thing.

I hope you are having a low pain day today. Feel free to contact me if you think I can be of any help.


Hollie 5 years ago

When my neuro prof told me I had NDPH I felt like I had been issued with a slow and drawn out death wish. So many people suffer with this for so many years, without reprieve. It's only been 10 months for me, I thought this was incredibly long,until I read this blog and found out my timeline is childsplay.

It started on boxing day last year, I was away for xmas with my family. My headache began in the afternoon, and by the evening it was intense. Later that night I ended up in hospital with incredible internal pains. They thought it was my gallbladder, they gave me morphine which helped, but as it was a rural hospital, they had no ultrasound machine. I was due to fly home the next day, I checked myself out of hospital and went to the doctors when I got home. The internal pain was gone, and the ultrasound showed no problems with my gallbladder or anywhere else. But the headache remained.

I went to my GP, he gave me pain killers, and slowly increased the intensity and dosage of drugs. Including pain patches. He also put me on sandomigrin for over a month.

My first neuro ceased all painkillers and started me on propanallol (? spelling). He also got MRI, MRI contrast and MRA's done. I had 3 lumbar punctures, all of which came up as a dry tap.

The neurologist said I have migraines and I just have to live with it, and that I was dependant on endone (painkiller) insinuating that I had a drug dependancy.

I promptly changed doctors.

The second neurologist ruled out migraine immediately. He ordered another lumbar puncture, where they were only able to get 1ml of fluid. He had no idea, and put it down to tension headaches, saying I was stressed about my future studies. He ordered a sleep study incase my sleep was somehow affecting me. That was no help, and it felt like he just gave up on me.

Then one morning in July I woke up without a headache! But by the end of the day I had lost my vision. I was taken into hospital, and they checked my eyes, they didn't seem to be the problem. They did another LP to make sure I don't have high pressure. I didn't, it was normal. There was a high white blood cell count, but no one seemed hugely worried. After 9 days my vision returned, when I woke up in hospital one morning and it became clearer throughout the day. When my vision returned, so did my headache.

They put me on topamax, and it caused numbness in my hands, feet and face. It was horrible. I also got a rare blood infection in hospital which may or may not be related. I finally got out of hospital 3 weeks later, none the wiser. The doctors had no idea why I lost my vision or why it came back.

I then started seeing the professor. He had more brain MRI's done, and also a spinal MRI to check for CSF leaks. They couldn't definitively see any leaks, so he thinks I have NDPH. I had botox a month ago on my forehead, all over my scalp and down the back of my neck. It doesn't seem to have worked other than on my 28yr old wrinkles!

Other than neurologists, I have been to the chiropractor 3 x weekly, the dentist, allergist, psychologist , psychiatrist, and Osteopath.

I have had to quit my job, and put my studies on hold. My life has ceased. I hate it.

If anyone has any ideas to assist my mental or physical health, I would so appreciate it. Thankyou for reading this. Writing it has been remarkably therapeutic :)

Cheers,

Hollie


Sora 5 years ago

This page is almost depressing to read. NDPH isn't an answer, it's a name for an enigma.

At 16, dropping out of my senior year of high school, and leaving my position as a championship dancer, I was crushed with a "diagnosis" of NDPH. I went through the medical ringer, like everyone else. I went through depression, anger, frustration. That "diagnosis" destroyed me.

Foremost, I'd like to say I'm not bitter, or resentful. Because I disregarded that "diagnosis" from the moment it was spoken to me.

I'm interested in that Conquering Headaches book, because from what you've quoted about it, it seems like fairly uninspiring nescient drip.

However I'm only going to discuss one point in particular:

"Most headache sufferers do not have temporomandibular joint (TMJ) syndrome."

I was told this on several occasions, I even had an ER doctor laugh at me after I mentioned the constant clicking I had in my left jaw joint for 3 years.

Now, fast forward about 4 months later, after a complete impaction wisdom tooth surgery, many upper cervical x-rays and treatments of my mysteriously straight, whiplashed neck, which stayed mysteriously straight. Why had a perfectly healthy 16 (now 17) year old girl lost the natural curvature in her neck and had an unremitting 7, 8, 9 and 10 level headache going on 8 months? I visited a different dentist who said, "you've clearly got TMJ, why has nobody treated you before?" and the simple answer is, they ignored it. I ignored it. She fitted me with a splint, which brought my pain to a lovely constant 10.

Finally, in desperation, she told me to see the world specialist, Doctor Mark Piper. http://www.pipererc.com/

A year later, I have my life back and I am now pain free thanks to Dr Piper, who correctly diagnosed me with a piper class 4a tmj disease http://www.tmjsurgery.com/stage4a.htm he performed a bilateral tmj arthroplasty fat graft, and the moment I awoke from surgery, I was pain free.

Post op, I had neck related headache pain, which is treated with ims needles and physical therapy, but is very common of tmj patients to have a loss of curvature in the neck due to holding the jaw in an incorrect position over time.

Don't accept NDPH as your life, and certainly don't regard things like "your tmj isn't anything to worry about." The medical system is in the dark ages regarding TMJ disease. In fact the current protocol is to "make tmj patients as comfortable as possible"

In the nicest way possible, tell your neurologists to shove it, and do what you must to get your life back. Dr. Piper saved my life.


AL 5 years ago

I have been suffering from NDPH since 3-9-10. It started from a servere sinus infection and it never went away. I had 4 months of therapy, 4 mri's, 4 catscans, spinaltap and 2 sinus surgies and nothing helped.Medication after medication, nothing helps.

I lost my job and now on work disabilty. Any advice on what might work?


Chantale 5 years ago

I Bobbie,

Gog always give u the stregh we need, every day and every minint of are day's. I now it's very hard someday just to get of are bed and go for a shower. I cry a lot to. But I continue to have hope then one day, i'm gone a be free from this pain. We have to keep hope in are heart. Do you try Botox in your head????? I try this last week for the first time. I supposed to start to see a difference today ??? Don't be afraid, you are not alone in this, and God is there for you al the time. Take is heand and walk with him in this suffuring.

It's not easy but a site like this help us to understand NDPH.


not4sakn 5 years ago

I was diagnosed with NDPH not too long ago. I had seen numerous doctors over a period of 3 years trying to determine what was wrong with me. I had mri's and catscans along with various tests trying to pinpoint the issue. After seeing 3 different Neurologists locally, I decided to take a trip to Atlanta, GA Jan 2011. I saw Dr. Mishu at Midtown Neurology. Viewing the same film the other doctors did, he was able to find the root of my illness. I have 2 bulged disc pinching nerves in my cervical spine at c3 and c5. NO OTHER DOCTOR to date has seen this. WHY?!?! How can such a thing be overlooked?

3 years of suffering with no light in sight and now I have an answer! The pinched nerves started causing facial tingling/numbness, neck pain, pressure in my head, light headedness, nausea, etc...all from pinched nerves. He described it as a form of trigeminal neuralgia.

I'm now seeing someone who specializes in the McKenzie Method to help get my disc realigned. I'm so thankful to finally have an answer and on my way to recovery.


Ziba 5 years ago

Hi Dara (Mother of 11 years old)

Would you kindly give detailed information regarding the CranioSacral Therapy performed on your kid? Or could you give the name or number of the therapist who helped your son? My 11 years old boy is suffering from the exact same problem here in Chicago and this will hopefuly be a great help. Please respond to my direct email mrzbtl@yahoo.com if you would. Best Regards.


bobbi 5 years ago

I felt like a million bucks the day before my headach started. I was gardening having a good old time went in and went to bed and the next morning i felt rotten. I didn't think much of it, except I had 17 spider bits up and down my arms. I had the headach all day. Got up the next morning and the headach was still there, i was dizzy sick in the stomach lightheaded, and my head was pounding. So I called the dr. They saw me the next day. The dr gave me some motion sickness meds, and some heartburn meds. On the 4the day I called and told her i wanted a MRI. After fighting for it i got it in june. The day it came back, the dr called and wanted me to go to Pittsburgh UPMC Hospital. Shock would be an understatement. What? Why? So I went to a neurologist

he said your ok everything on the report wont cause a headach. He said i had viral meningitis and it would take a while to get over. Well 7 months later i wanted something else done. So he did a spinal tap which he was 2 hours late for and they had to call him. And he told me to go to UPMC. So i went to the headach clinic and after talking to the dr and her reading all my tests and papers told me i have NDPH and put me on topamax. So we are to this point. God gives us tests and sometimes they are hard. I just hope I have the strenght to fight this and make it through. Everyday is a struggle and some days I cry. And even though people are being supportive they dont have a clue what its like to have a headach EVERYDAY. Thank you for letting me vent my story.


bobbi 5 years ago

Today i was diagoned with ndph, and looking on the web i found this site i have had my headach since May 26 2010. after MRIs, blood, spinal tap and gobs of other pokes and prodes here goes my journey


jared0000 5 years ago

Hi there, thank you all for all your stories and aids. It's actually a comfort to know it has a name other than migraine or headache which people only commonly understand as something they can get rid of with one pill and so lose any understanding of what we are going through. I have had a headache now for 6 months and not happy at all to hear i could have it for years. I do remember a rash on my legs for a few days before the headache began, and had been at the local swimming pool around the time just before. I got sick very quickly very intensly one afternoon and been stuck with this headache since, so can agree with the relationship there, but can't remember who was asking. I have been put on epilim by my neurologist,but this is starting to lose it's effect. but yeah am going through [coming out] the depression side of it now. just been for my first MRI and awaiting results.Thank you Dara I will ask for them to look for the twisting in the neck and the collapsed tube. I am also seeking help the same maney ways you've all listed and with spiritual healers with Rieki healing, and have to say results are pretty poor from everything at the moment. Though only bit i can perhaps pass on is that my Rieki healer keeps stressing to me to meditate on controlling my breathing and to push though the pain for cardio exerises'.

Amy Jane thank you for this site.


chantale 5 years ago

Sorry! I'm french and my english is not very good for writing, but I understand every thing. I'm just receve a diagnostic of New daily persistent headach. I sufferd from that since the 15 of january 2006. I just find out a new doctor, and hi finally find my problème. The probleme is it really hard to find a pill to release me from this pain. I always have all the side effect. It' give comfort to find out i'm not alone suffured from this terrible pain. I have pain all day long since almost 5 years.


Yolanda 6 years ago

Migraines for me started in July of 1995. Ended up in the emergency and since then frequented the hospital for them (pain, vomiting, dry heaves, etc.) I like so many of you have just had to learn to deal with them and just pray for a good day. I've tried so many drugs I've lost count; someone asked about botox. I tried it and it did not give me any relief; have had facet injections; nerve blocker injections, etc. I think I've tried it all but I keep searching just in case there's something I haven't tried. Thank you so much for this hub. Although it saddens me that there are so many migraine sufferers, it does bring me some level of comfort that I am not alone (or crazy).


Lee 6 years ago

This time its me,Lee,my loving wife posted my very 1st comment,with knowing how much I suffer with this NDPH.I am 45yrs old and had this headache for a year and a half.I've had MRI,catscans,lumbar puncture,and more tests that I've already forgotten about Im sure!Have tried anti-seizure,anti-inflammatory,muscle relaxants,botox,chiro,trigger point injections,myofascia, and once again things Im sure I've forgotten!The Dr.s dont tell you about the host of other side effects that may come with NDPH,anxiety,depression, insomnia,these can be scarier sometimes than the headaches themselves.I am also taking it 1 day at a time and pray 1 morning for it to be gone.Until then we all need to be strong for ourselves and the ones we love[we have 3 grown children 24,19,and 18]Thank god for my strong wife,Sherry or I,m not sure were I would be today


Lee 6 years ago

I know where you are coming from. I have been diagnosed with NDPH. I have had a non stop headache for a year and a half now. I am going out of my mind and can't find anything to even bring the pain down a little. I would love to find something just to bring my headachs down to a comfortable level. I having a hard time coping with this headache every day. I need to talk to someone that is experiencing the same thing. I am having trouble tring to get connected on online support groups. Please help!


dara 6 years ago

it is me riley the boy who had the problem now i am playing travel baseball again and im doing great try cranial sacrel therapy just try


jasper420 6 years ago

i was diagnost with migraines but after reading this info im not so sure thats what is wrong great info hope things work out for you with your headaches good luck


amy jane profile image

amy jane 6 years ago from Connecticut Author

Hi Dara,

Thank you so much for sharing your story! It is so good to hear that your son has found his cure! I have spoken to some people who have not had success with cranio-sacral therapy for NDPH, but I also think that it is not caused by the same thing for all of us. Different things work for different people. Generally, none of the meds work long term for any of us, and if the pain doesn't improve, it becomes all about pain management.

I hope his health continues to improve and I will give this a try myself. Thanks so much,

Amy


Dara 6 years ago

Sorry...my link above is cut off....here's the link to the CranioSacral Therapy

http://www.integrated-therapies.com/Therapies/cran...


Dara 6 years ago

My son (11 years old) caught a virus and developed a headache on January 11, 2010. His symptoms seemed to be ‘strep like’. He had an upset stomach, a rash on his tummy and headache. His strep culture came back negative but was treated with an antibiotic for 10-days. After the 10-days, the only symptom that remained was the headache. Then he was tested for Lyme Disease. The test came back negative, but the pediatrician put him on doxycycline anyway. After 10-days of doxy, his headache was excruciating. Another trip to the pediatrician and they sent him to the emergency room for a spinal tap. Spinal tap fluid tested clean – no sign of infection. Ordered a CAT scan – came back clear. Admitted to the hospital for high test drugs (DHE-45 primarily) and they were treating it like a migraine. The headache did come down in intensity, but was not eliminated. We began seeing a Pediatric Neurologist who continued to try and treat him with several different migraine medicines (many…including Maxalt and Amitriptyline). We went to neurologists at Hopkins, Children’s Hospital, University of Maryland Medical Center, the MidAtlantic Headache Clinic, and Sinai Hospital searching for a diagnosis and treatment plan. He had an MRI and an MRA/MRV – all of which indicated nothing abnormal. On March 10, 2010, he was diagnosed with New Daily Persistent Headache. We began treatment with Topimax and slowly and methodically ramped up to 150mg – but there was no relief.

His headache got worse every day with no periods of relief, and when it became unbearable we’d go to the hospital for a few days of DHE. He also began experiencing a heightened sensitivity to sound and developed phonophobia. He started wearing noise cancelling headphones and soon became addicted to them…needing them all day and even slept with them on. Any noise became very painful , and he wanted total silence. We finally began looking into alternative medicine. We started having an acupressurist come to the house. She provided him some stress relief and relaxed him a bit so he could sleep better at night. Then we saw an alternative medicine therapist that performed Craniosacral Therapy (http://www.integrated-therapies.com/Therapies/cran... On May 3, 2010, he had his first Craniosacral Therapy treatment. His headache drastically improved after the first treatment. His headache was gone after the 2nd treatment on May 6, 2010. After one treatment for his hearing, he was able to take off the noise cancelling headphones. The therapist (who we refer to as the ‘healer’) continues to work with my son on the hearing sensitivity as he needs to retrain the cochlear nerve in his ear to regulate sound again. I should also mention that the alternative medicine therapist reviewed the MRI (that 5 different neurologists had already reviewed) and showed us his collapsed eustachian tube (which contributed to his hearing problem) and tissue at the base of his head that was ‘twisted’ and under ‘tension’. Why did none of the neurologists see what she saw? Our healer said they look for different things…like cancer, shadows or tumors. She looked for structure and was able to prove using the MRI the things she described and felt during her craniosacral therapy treatment.

He has his life back. After spending 5 months at home, not going to school, seeing multitudes of specialists and 2 hospital stays, he is finally returning to normal.

I write this post to hopefully reach people who can benefit from our story. When he was diagnosed with New Daily Persistent Headache, I surfed the web and read many a blog with sad stories with no happy endings. We are fortunate to have found treatment that worked for us. We hope that this information is helpful to you and that you too find relief from your headache.


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amy jane 6 years ago from Connecticut Author

Hi Jim,

I'm glad you found my hub. I hope that you will not get this diagnosis! My doctor has said that it resolves itself for some people with in a year - which may sound like a very long time to have a headache, but compared to the average NDPH sufferer, its not too bad. Wishing you a pain free day and a solution soon. Keep us up to date on your condition!


jim k 6 years ago

This is amazing that I found this, I am up tonight again because I cannot handle the pain in bed, I have just recently encountered this but I am almost certain that this is what I suffer from, NDPH. Four weeks ago I woke up with a pain I had never experienced and have had some level of that pain every day for 30 days and counting. I went immediately to a CT which has come up clear and have my first neurology appt June 10th. This has already helped me immensely reading everyones experiences, it looks like I may be entering into a long journey....


amy jane profile image

amy jane 6 years ago from Connecticut Author

Hi, sorry for the delayed response. I'm just seeing your comment now.

I think that NDPH could be a possibility for you, especially if everything similar has been ruled out. Neck pain is common, I have constant head pressure and occasional tingling in the face (but only after a couple of years of NDPH). Yes on the dizziness too.

It is not a diagnosis you want to be given, that is for sure. But at least if you know what it is, you are better able to treat it and manage the pain long term. For most of us, that is what it becomes about - limiting the pain as much as possible. It's been five years now, but I am better than I was even just a year ago. I make little improvements every year.

If you have any more questions for me, please, ask!


not4sakn 6 years ago

Hi, I just ran across your page and can certainly relate. I've been dealing with similar symptoms for two years now. Having seen doctors from all background, countless tests, and brain/cervical spine scans later and still no answer.

A Neurologist I saw this week was the first to suggest NDPH as the culprit. I of course am skeptical and hoping for a cure. One thing that makes me suspicious is the facial tingling/numbness that I get that can be unilateral and bilateral at any given time throughout my jaw area along with constant daily head pressure, occasional dizziness, neck pain, and visual floaters. Are these additional symptoms common with NDPH from your experience?


amy jane profile image

amy jane 6 years ago from Connecticut Author

John, thank you so much for commenting, adding your story and advice. There are a few things you mentioned that I hadn't given thought to before, and I will look into.

I'm so sorry that you have been going through this for so long. Unfortunately it does seem like a permanent condition for most who suffer from it, but I still hope that a cure or even a somewhat useful treatment will be found. I hope that you will keep looking for your treatment / cure also.

I know what you mean about detaching from the pain. I think I have learned to do that too. I've gotten very good at pushing the awareness of the pain away, except when it is severe. My tolerance seems to increase each year. I just passed the 5 year mark. I cannot imagine how you must feel after 20. I wish you a low pain day - and stop in and comment again if you think of anything that may be helpful to me or anyone new to dealing with NDPH.


John 6 years ago

I'm John, 32 years old. I have had constant head pain for 22 years with no breaks at all. I actually do not recall what it is like to not be in pain because of the young age of onset. I was first tested and diagnosed at the Mayo Clinic in Rochester at the age of 10 soon after the sudden onset of pain during Aug. 1988. The cause was said to be from accumulated minor head trauma. I tried all of the meds we could. In 1998 (age 20)I did an inpatient treatment at MHNI in Chelsea, MI. I was finally given some info about my pain and a diagnosis of chronic daily headache. I'm sure my diagnosis is NDPH but I need to have it confirmed as that diagnosis was not available in 1998. I use to have periods of low pain mixed with moderate to severe, however, my baseline pain increased after six years and I now have only moderate to severe pain. I would recommend most people avoid narcotics because they have been shown to create inflammation in the part of the brain that processes pain and can eventually lead to increased pain and increased sensitivity to pain. Be cautious with muscle relaxants, too. I struggled with severe addiction to Soma. Watch out for rebound headaches from over the counter pain meds (ibuprofen, aspirin etc). I take 400mg ibuprofen no more than 3 times a week (any more can cause rebound headache). I also use extra strength alka seltzer because it takes the edge of the pain and the sodium bicarbonate balances PH which reduces pain and nausea. Avoid food triggers and be on a regular sleep schedule. Too much or too little sleep can cause increased pain. I have learned that this condition is permanent for most and the focus should be on managing pain not hoping for a miracle cure. There is some research being done which could lead to new meds so I guess there is still hope. I mostly detach emotionally from my pain as best as I can which has given me the ability to not "remember" bad episodes from day to day or even hour to hour(coping mechanism).


amy jane profile image

amy jane 6 years ago from Connecticut Author

Hi Beetle, thank you for sharing what works for you. I don't think I have tried pure peppermint oil - so it is worth a shot! I hope you find some permanent solution for your pain soon.


beetle 6 years ago

I have headaches that last for months on end.....the one I have now is 6 months and counting. I have found pain relief using pure pepermint oil.....a dab on the spine just below the nap of the neck or i use Dr.Bronners (brand) of pepermint and hemp oil pure casteel soap...i dip my head down into a hot bath and put the soap all in my hair like a shampoo and let it soak in for a while....i can get several hours and sometimes a nights relief from the pain.


amy jane profile image

amy jane 6 years ago from Connecticut Author

Reed, thank you so much for the well wishes. I hope you find pain relief soon as well. You are so young to have to deal with this pain. My heart goes out to you as well.

Thank you for the prayers Skye2Day. I will definitely check out your hubs. I look forward to getting to know you!


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skye2day 6 years ago from Rocky Mountains

Hello amyjane, I came over for a visit because I read one of your comments to swiftly clean. It was a beautiful heartfelt comment.

Your hub is very 'enlightening' I had cluster headaches many years back. I thank God they only lasted for around 6 months. The meds did not work. I prayed allot. I remember that for sure. They just gradually went away. I forgot about them until I read your hub. May God Bless all of you facing this 'mind boggling' illness. I know a few people that suffer from migranes. I know in my life prayer has moved mountains, I have prayed until my answer came. For me it works. I will send prayers up for you. I do hope you find relief and soon, sweetie. I know what it is like to be sick and live with it. I have been there. God is the master physician. He is the healer. Amen to that. Peace and Blessings.

Come over and visit my hubs. I look forward to a friendship at the hubs. Hugs.


Reed 6 years ago

I am 14 years old and I have been diagnosed with NDPH I have had them for the past 2 years and your hub really opened my eyes to see I am not alone, and there are people out there that do understand. I understand that it is almost impossible to function with a headache and people don't understand because they can not see a headache. I have only had 3 headache free days since it started. I do not remember the day it started because it started with a virus. I really do sope you find relief and my heart goes out to you raising a family and working on top of the headaches. You are a very strong person to handle that some days I don't know if I can even handle it. Good Luck!


ClareBaros 6 years ago

I am a sufferer of severe migraine headaches and my head no longer aches. I had illness with a severely backed up lymph system that forced me in careful eating that was the only thing that kept my relief in. I came to see it was the fat in my diet that was plaguing me. God bless you and keep you headache free.


Listyj 7 years ago

Hi Amy Jane, thankyou for your hub. I was diagnosed with NDPH after a long and arduous search similar to your own... I was perfectly well one day then woke up with a splitting headache, which intensified within days and crippled me totally. I went to the ER and all the usual tests were done: ct, MRI, blood tests etc. Boone knew what was wrong with me and I began to get the feeling that the doctors decided that as there was nothing "wrong" with me on paper, I must be making things up. Obviously when you are in so much pain you just want answers and to be told in nonuncrrtain terms that you are imagining things is very upsetting and hard to deal with. I continued my search to find the problem and ended up being being diagnosed with a breast implant infection (staph) and was immediately taken in for surgery to have then removed. The doctos said that once the infection was taken away the headache would be cured, bug much to my frustration it remained, though my other symptoms such as fatigue and aches and pains showed significant improvements. My neuro says the infection was most likely the trigger for my NDHP, bur I just can't understand why the headache remains after the infection has been cleared!! I have tried a number of medications, including various anti depressants, topamax, codeine, valium and various analgesia but none have helped. I am seeing my neuro on Wednesday and he gas suggested I try Botox - does anybody have any suggestions to me as to the effectiveness of this treatment, or can anything else be suggested that I have not tried? I really appreciate everyones help - anything that will let me get back to normal life wound be simply wonderful. I hope everyone is coping ok - I wish it was an easier to treat illness! Kind regards and vest wishes to all :)


Truthseeker 7 years ago

Hello

No doubt you reading this will ignore the possibility but NDPH was likely to have been manufactured in laboratories and distributed to us via vaccinations. It lies latent and emerges as NDPH at an age which will depend on your particular DNA. Please do not be naïve enough to think that they cannot cure this quite easily because high science and medicine is so advanced that virtually everything that exists has a cure and they will be suppressed as long as they require. There is always the usual hope given to us of future tests but this will never happen because the take down of all the young with this ailment and many others is calculated. 'They' do not want a healthy population and this is just one of the ways in which they are crippling the herd to ensure that there is no one in a position to resist their agenda. Fast acting cancers, HIV, Ebola, Avian Flu and Swine Flu are were created in the same way and are being used to de-populate. You will not believe it because you rely on mainstream news to download you with your thoughts and conclusions but the media is controlled by the same big boys who are destroying our bodies and killing us off.

Thanks for reading


Josh 7 years ago

oh, and I should probably mention that my 3-4 month onslaught of my own meditative techniques and personalized alternative medicine was a life changing cosmic/spiritual experience. I wish anyone dealing with this the best of luck.


Josh 7 years ago

I had one of these monsters for about 5 years. At times it was hell, at other times it was just sort of there. I remember always thinking I would just have it forever and that I should deal with it. Nothing worked. Then I started messing around with what could only be called alternative medicine. I didn't read anything about it. I just basically launched a relentless assault of my own personalized made up mumbo jumbo, not including drugs unless you count a few headache powders and some vitamins.

I did this for about 3 months before I had that thing go away. About 3-4 weeks before the thing left, I felt a sense of control over the RELENTLESS pressure. I was very skeptical of this. Then one day out of the blue I was going to get a drink of water and POOF, it left. There wasn't much catharsis type feeling or anything. It felt like it just disappeared. I experienced a little dizziness afterwards which I never had before. However, 2 years later it's still gone. I have no idea what cured it. I wish I could tell people something specific. I was just trying everything I could think of no matter how stupid it sounded. Some of the things were hilarious such as trying to induce an ice cream headache to create some sort of "headache balance". I can't think of what did it for sure, if anything other than time and luck. There were probably about 100 different things I did. My message is that this thing CAN go away. It is possible. I don't know why, but for some reason I don't fear that thing returning.


amy jane profile image

amy jane 7 years ago from Connecticut Author

Laura, Please try it! I am convinced that if I could truly stick to every aspect of the diet my headaches would go away. I tried it for around 6 months and my pain decreased significantly and all around I felt better than I had in years. I am preparing myself to go back on it. It does require a certain amount of organization and focus to stick to. I did not follow all of his instructions- I still drank a little coffee and an occasional coke. I tried though...and I will keep trying. The main point he makes regarding headaches is that we are most likely "toxic" from a high protein diet and processed foods full of chemicals. It makes total sense to me.

Please let me know how it goes when you try!


laura 7 years ago

Have you had much success with the Eat to Live Diet? How long have you tried it for? I have the book and am thinking about trying it. Have not had much success in the past with elimination diets. thankfully, our local headache clinic (Cincinnati) just started the first headache support group. YEAH!!!


amy jane profile image

amy jane 7 years ago from Connecticut Author

Hi Laura, I'm glad you found it helpful - you are not alone in this struggle, but it sure can feel like it when no one understands!

We all seem to have similar experiences with medications - they may work for a little while, but then they become ineffective. For me, they rarely work to begin with! I have considered trying Botox as well - at least you had a month pain free! I have heard bad stories about it as well, so I am a little afraid to try it.

Thanks for commenting, please keep us up to date on your progress or stop by my blog ( http://ndph.wordpress.com ) if you need a bit of support or want to share your story.


laura 7 years ago

Am so glad to have found everyone's comments. I too have been suffering from NDPH for almost 3 years now. I developed it 6 weeks pospartum. I do go to a headache clinic, but have found little relief with the meds, whether preventative or acute. It seems they work very well for a short period of time and then I can almost feel my brain rewiring itself around the meds and then the pain breaks through and I know that drug has run its' course. I have tried Botox with success, but the cost is too great and I only got 1 month's relief. I too have small children and the distraction is a blessing, except of course on the high-pain days. I constantly weigh the trade-off between the pain in the head and the horrible side effects of the drugs. After being off preventatives for a short time though, the pain just plain becomes unbearable and I find myself running to the neurologist!!!Then after various side effects I find myself running to my primary to fix all of the other stuff that becomes wrong with my body!!Insidious...I am grateful that we do have these medications available and that although it is so little that is known, I can't imagine what my life would have been like 30+ years ago. I would like to get more involved in spreading the word about NDPH as NO one except us understand. I have told very few people because even those close to me still can't understand. Thanks to everyone for the comments and helping me feel a little less alone in this world with this.....


amy jane profile image

amy jane 7 years ago from Connecticut Author

Hi Jessica,

I'm so sorry to hear that you have so little support from family on this. It is important for you to find support as you go through this! I think many of us have had the experience of people thinking wse are faking it, especially when we learn to simply push through the pain and go on with life as much as possible. I think over time we learn to adapt to he pain to some exent, where the average person would not be able to function at all with this kind of pain.

Keep trying more medications, maybe you will find something tthat works. You should definitely find a doctor that knows aand understands NDPH. The depression is completely normal for someone coping with this type of chronic pain. Hang in there - let us know how it goes with the new doc.

I'm seeing a new doc myself next month and I've heard of a new drug that has been working for someone with NDPH. I don't know the name of it (I will post it when I find out) but it is used primarily for Allzheimer prevention. Hey, sounds good to me. She isn't having any negative side effects and she is close to being headache free.

Please contact me if there is anything I can do to help you out, or if you are just in need of some support. :)


Jessica 7 years ago

Amy, I want to thank you for posting this. I started getting migraines in january 07, they started getting more frequent, by August 07, I got one that didn't go away. Now after reading this, I know what I have. And even though there isn't medication for it, at least now I can explain what is wrong with me. I've had all the scans, had a spinal tap, I'm seeing my 3rd neurologist that just referred me to a 4th. No one knew how to break the cycle of that we all thought was a migraine. I had to try for disability at work, got denied and lost my job. So now I'm trying for ssi and ssd. Not what I want to be doing at this point in my life. At first my family thought I was "faking" it so I could get out of work. Great support I get there. I'd rather be working, living a normal life. But at least now I have some answers. I can empathize with everyone, i suffered from depression before the headache started, but since I'm in constant pain, the depression has gotten worse, suicidal thoughts and all. Luckily I was put on Cymbalta, that has helped more than any other anti-depressants I've been put on. It is also supposed to help with pain but I don't see much of that. I also get the pain in my joints for no reason, glad to know most of you think this is all related. I didn't have the rash though. I'm gonna thank Curt for referring me to the Migraine remedies from natural sources site. I would never have found this site without it. I'm going to go do more research on NDPH so when I go to my new neurologist, i can see if he knows about it. Also, I was put in the hospital for 3 days once so i could get the DHE iv. It worked after 3 days, but made me very sick to my stomach. And I was pain free for 3 days but the headache came back. I was given DHE that I could inject myself but I fould that didn't work and where I injected it into my leg, the site would swell and be very itchy for at least 24 hours. It wasn't worth it, since that didn't work. So the DHE given in the hospital may work for some people, it's worth a shot.


Melissa 7 years ago

I feel for your daughter, this NDPH sucks, my neuorlogist has mentioned botox, there has been some success with it.

I totally understand what she is going through with the medications I have tried 47 of them over the past 4 years and I would have side effects and worse headaches. I am currently on oxycocet and that gives me some releif so I am able to continue on with life. Some times ice packs helps or sometimes heating pads help.

I found once I stoped drinking caffenine it gave me some releif, so no coke, coffee or tea, did not stop it but is lessen the pain.

Try and keep your chin up, and think about all the positve things in your life, I hope for everyone on this site we get a cure.

Good Luck!!!


NDPH mum 7 years ago

My 15 yr old daughter has had NDPH for about 2 1/2 years now. She has tried lots of different treatments - so far nothing works. She now has severe depression with suicidal thoughts, most likely because of the constant pain and the restrictions it places on her life. Unfortunately, she cant seem to tolerate the antidepressants she has tried - they make her headache much worse. She is trying to continue school, but it is getting harder and harder. It seems so unfair that there is no treatment, and nothing that even seems to reduce the pain (goodness knows we have tried her on every painkiller there is - the only thing that worked was a high dose of morphine which she had after an operation). She is also very sensitive to lots of things such as cosmetics, medicines, food. Her aunt has fibromyalgia. I am wondering if there is a link between her sensitivies and the headache, or if it is related to fibromyalgia in any way. There doesn't seem to be much support for NDPH in Australia, although her neurologist and psychiatrist are as supportive as they can be - they just don't have any answers.


Melissa 7 years ago

Hi there

Just wanted to let everyone know that my Doctor is sending me to the RothBart clinic. This is a Clinic in Toronto that deals with cronic pain, My Doctor thinks that the nerve in my face has been affected and that a nerve blocker injection may give me some relief, it is not botox it is an antinflamitory injection. If this works you can be pain free for 3-6 months, I can not wrap my head around that after 4 years of pain. Wish me luck and I will be sure to let everyone know how it went.

You mentioned a change in diet? what types of things did you change? I am willing to try anything at the point I have had no luck with everything I have tried.


Laura 7 years ago

Amy Jane, It's so encouraging to know that you actually have pain-free days sometimes. I cannot even imagine how amazing that must feel. I still keep plugging away trying to find something that works. I recently tried Namenda (the Alheimer's med) that has had some success in breaking through chronic headache pain. Unfortunately, I couldn't tolerate the side effect of feeling kind of "foggy." It might be worth a trial for some of you. Currently, I'm experimenting with the anti-viral drug Valtrex, just to see if it might respond. I still keep thinking I must have been exposed to something that caused the headache and "leaking capillaries" in the legs at the same time. We have a hyperbaric chamber here in St. Louis and I'm doing some research on that as well. Amy, thanks again for this site. I found it more helpful than sifting through the MD junction site to find someone with NDPH. It helps me when I get really down about the headache to know that I am not the only one out there with this, and that others also understand the constant struggle. I'll continue to keep all of you in my daily thoughts and prayers. Try to stay positive and hopefully soon someone will find a cure!


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amy jane 7 years ago from Connecticut Author

Melissa, you absolutely need to find a doctor who knows what NDPH is ans understands that this is NOT a normal everyday stress headache. I understand your frustration. My fist doctor treated me the same way.

I don't know what to suggest, other than trying alternative therapies like acupuncture, chiropractic and dietary changes. They can all to manage and cut back on the pain tremendously, without side effects. As for a cure, don't give up. It may not look promising, but there are many people that find their own cure. Just don't stop searching.

You are not alone. have a look at the support group listed above (mdjunction). The people there are wonderful and you may find some new ideas to try to manage NDPH.

I hope your pain will end soon and please keep us updated.


Melissa 7 years ago

I have not written in a while, cause really nothing has changed in my situation. I was wondering if anyone else has had any luck?

I went to see a DR today to get a repeat on my pain medication and he told me that there was nothing wrong and that everyone suffers from headaches, he also said to me that no one has ever died from a head ache and that I need to get off the pain meds and deal with it. How do we get doctors to understand what we are going through? This was not my family doctor he was on holidays.

Is there ever going to be a cure or something to make this go away? these headaches have taken over so many lives and it is not fair, and all these doctors keep saying well I do not know and push meds that give you the worst side effects, and still have pain. I just do not know what the next step is, anyone have any suggestions?


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amy jane 7 years ago from Connecticut Author

Hi Donna, I am thrilled to hear that you have found something that works for you. Thank you for sharing the details, hopefully that will help someone find the right medication / dosage for themselves. I wish I could take topomax, because it seems to be the most successful medication for treating NDPH. I can't take it due to past kidney problems. I have heard the side effects can be annoying (most people complain of a strange numbness type feeling).

Rain is a trigger for me also. I have considered moving to a dry climate! Intense humidity is a problem for me in the summer as well.

Thank you again for the update, and check in a again soon and let us know how you are doing! So glad you are doing better.


Donna 7 years ago

I wrote about 2-months ago that I was diagnosed with NDPH and was not very hopeful after reading this site. After being on new medication, my headaches have subsided. I have also went for 5-days in a row, pain free. That is like a miracle, considering I took pain medication everday for over a year. My doctor told me, I was in pain for a long time, I would need to allow the medication to get into my system to become pain free. But having a headache every 5-6 days is better than I could of ever hoped for. I have also tried to be aware of some triggers also, and I believe rain is one of mine. My medication is Topamax-150mg, and Amitryiptilyn 50mg, a day. I do have some side effects, but they are worth being pain free! I am hopeful that the longer I am on the medicine the longer my pain free days will become. Time will tell!


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amy jane 7 years ago from Connecticut Author

Hi Laura - I do have days now where I don't have a headache at all, and I am so grateful! I actually had two entire weeks pain free this past month. It was amazing! I had convinced myself they were gone forever! Unfortunately, the headache came back, but it is no longer constant as it once was. I am four years into this and take no medication at all at this point (due to side effects). I do watch my diet very carefully and am aware of my personal triggers, like chocolate, soy, and certain for dyes / artificial colors. Distraction has been my only way of coping, so I know what you mean. If I hear of any new possible treatments, I will post here - please do the same if you find something that works for you! I hope that you will get a break from this pain soon.


Laura 7 years ago

Hi,

I haven't posted in awhile. I was just hoping to find someone out there who may have gotten some relief with this NDPH. I'm coming up on my one-year anniversary on May 31. Currently, I'm taking a couple of bioflavanoids (Rutin and Quercetin) along with 1000 mg Vit C and Neurontin. I still can't get lower than a 3/5, for which I am extremely grateful during those times. Working with a 4 is tough but I've found distraction works well for me. Having 3 kids (ages 9, 6 and 4) also provides distraction. Amy Jane, from your last post, you mentioned headaches (plural). Do you have days now where you actually don't have a headache at all? I cannot imagine how exhillerating (?sp) that must be! I hope that means that someday soon your pain (and all those suffering from NDPH) will dissipate altogether. Meanwhile, hang in there and know that you are not alone in your trial.


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amy jane 7 years ago from Connecticut Author

Hi Kar, I'm sorry to hear of your pain. Keep trying the natural remedies - even if they can't give you a total cure, hopefully they can alleviate some of the pain. I found that acupuncture was helpful and was able to decrease the intensity of the headaches for a brief time. Unfortunately, my insurance didn't cover it, so I could not continue with it indefinitely. I wish you all the best and please stop by and let us know if you find something that works for you.

Hi Dagny, thank you for the kind words. There is some truth to the dehydration talk. Not drinking enough water will trigger a headache for many people. Try drinking more water and see what happens! It would be wonderful to find such a simple solution. :) All is not hopeless. There is a solution to this somewhere - most of us have not found it yet, but I refuse to believe that I will be spending the rest of my life like this. I have consistently gotten better over the past two years. I still get the headaches, but not constantly (thank God). That alone is something to be thankful for! Do see a doctor - you never know if the solution maybe something simple. Thanks again for reading and I hope you will be pain free soon!


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dagny roth 7 years ago from Neverland

Wow Amyjane...this is really interesting and I am so sorry for your trials. I do have headaches frequently which was what drew me to your hub. Do you know if the correllation between not drinking enough water (dehydration) has validity? Gosh I was thinking of heading to the doctors to discuss my frequent headaches but after reading all this It sounds almost hopeless and futile. I am glad for the info you shared. Feel better!


kar4242 7 years ago

I'm coming up on 3 years with this headache on 4/14 and I tried several meds, occipital nerve block shots, 10 days of steroids, acupuncture, chiropractic, change in diet, etc.  I woke up one day and my life was completely different.  I was also in perimenopause at the time and I'm feeling like hormones have something to do with it as well as a sinus infection I had about 6 weeks prior or so, or it was triggered by Diovan - I took one pill the day before for high bp (which I don't really have by the way)...who knows.  I was just diagnosed with NPHD after initially being diagnosed with tension headache/migraines.  I just had another MRI with and without contrast last week and a CT Scan of my sinuses the week before.  I'm tryng acupuncture and homeapathy remedy.  I tried something called Nux Vom a few weeks back and it helped tremendously but it made me not be able to sleep for 4 nights so I had to stop.  I'm trying something else now but I had to stop that too for a few days as my night sweats got really worse along with my heart palpitations.  I'm so sensitive to any meds I've tried so I was trying homeapathy.  Looks like I'm sensitive to that too. Wishing you the best.


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amy jane 7 years ago from Connecticut Author

Hi Melissa,

Your story is similar to so many that I have read. It is not unusual for medication to be ineffective in treating NDPH. Most people feel that you just have to keep trying different meds until you find something that works. I found the side effects to be too troubling considering the medication brought me no relief. Basically, I just felt worse. I had the headache + stomach pain, ulcers, weight gain.

Have you tried any alternative / holistic treatment? They may make the headache more manageable. I have found the Eat To Live diet (vegan/high nutrient) helps me when I can stick to it.

I have not tried botox - many have and the reviews are mixed. It could help, but like everything with NDPH, it's different for everyone. Take a look at MDJunctions support group (there's a link above). People there with NDPH have tried it and can give you a realistic idea of what to expect.

Hang in there. I know that feeling of not knowing how much more of it you can take. It sounds like you have been through so much in an effort to get this under control. I hope you will be pain free soon. Do have a look at the support groups above - they may have additional suggestions for you also and keep me up to date on your progress. You are not alone in this fight. :)


Melissa 7 years ago

How did this start with you? For me it was a sinues infection that went bad as they say. I was sick with a sinues infection for 3 months. One night My body went weird my heart started racing and my legs went numb and I could not walk. My husband was going to take me to the hospital and I tired to stand up and my legs kept giving out, so we ended up calling 911 and they took me in.

After all that is when the headache started, I have tried 47 different meds and had many ct scans and mri's. Thank god everything came back fine but it is frustrating when you still get no answers. I have been to many neauorlogists and ENT and so on and so. I had 2 surgeries on my sinues and nothing. They now want me to try botox. Has anyone tried this and has there been any success? I had a baby in Aug and through my whole pregancy all the doctors had no clue as to what i was talking about with NDPH. Many of them said so really they do not know what is wrong with you?

I really hope they figure this out soon I am not sure how much more I can take of this, It really does take over your life. Any suggestions would be wonderful


amy jane profile image

amy jane 7 years ago from Connecticut Author

nymesis - thank you for reading. I hope your wife will read this and find it to be helpful in some way for her situation.

Melissa - I am so sorry that you are going through this. It has been 4 years for me now (I wrote the original article last year) and things haven't changed significantly for me yet. I am still hopeful. I am still trying and I hope that you will find something to help soon. I will post any new information that I come across in case it could help you or some one else in our situation.


Melissa 7 years ago

I have been suffering from NDPH for 3 years now. I have been through the wringer trying to find out what is going to make this go away. So far nothing has happen. I like many others go through high pain days and low pain days. I had to take 1 year off of work due to the headache. I currently take high pain killers daily and would love to get off them, so if anyone can help me please send it along.


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nymesis 7 years ago

My wife has been dealing with headaches like this, not as often, but it seems as though its more frequent now. I am gonna have her check out your hub so she can read about your experience as well.


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amy jane 7 years ago from Connecticut Author

Hi H- sorry that you are going through this. I know what you mean - the headache does kill all creativity and ability to focus and enjoy creating. I have learned to work through a mild / moderate pain with some success, but I can't "count" on being able to get through a project. It's so frustrating, really.


7 years ago

thanks for writing this blog - it's been about 4yrs for me - I am a creative - well `i was, but this headache takes over.


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amy jane 7 years ago from Connecticut Author

Danielle and Donna,

I am so sorry to hear that you are both suffering from NDPH. It can be completely life changing, and I hope you both find relief for your pain quickly. Donna, finding people who are going through it and understand the pain was a real turning point for me. It helped me to cope with the daily experience much better knowing that I am not alone. Next week will be my 4-year anniversary of the onset of NDPH. (I won't be celebrating)! I think that I am coping with the pain better than ever for the most part, but we all have those days where we get frustrated.

Hang in there, keep trying new things to stop the pain and if you ever need support or a place to vent, feel free to contact me. Don't give up!


Donna 7 years ago

I was recently diagnosed with NDPH and this site gives me little hope of being pain free but it does let me know that there are others out there just like me and that I am not crazy! My pain started on 2/13/08 and I have not been pain free since. I have also tried many types of medications, eliminated things from my diet, exercised, and even tried to sleep it away but nothing seems to work. My new doctor is hopeful that he can come up with a regimine to make me comfortable. That is what I pray for! My life has changed somewhat but more because, I believe, the side-effects of the medications, than anything else. Someday I pray to be painfree again and to live life without any medications! I also hope that people would understand that this is not a headache like any other, this is not caused by stress or worry, it is not because you have to much going on in your life, it is just something that has happened! No explanation for it!!!


Danielle 7 years ago

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I came upon this hub and cried. Because I have possibly found an answer and fear that this may not go away. Some days I wish I had a tumor they could find somewhere in my head and it could be surgically removed. At least I would have an answer.

I have been to an Internist, Psych, Endo, dentist, ophthalmologist, had a CT and I am waiting to get in to my Neuro. I have changed meds, I'm on Topamax, Anti Depressants, new glasses.

I weep.


B Godel 7 years ago

No rash as far as we can remember


Laura 7 years ago

Hi everyone,

B Godel, I am so sorry for what your husband is experiencing. I hope he can take at least a little comfort in knowing that he is not alone in his suffering. Trust me when I say (and others) that we know exactly what he is going through. You go to bed every night just praying that it won't be there in the morning, and it is, and then you just do what you can to function during the day. Distraction helps but never takes the pain away. He's very lucky to have you for his support!

DHE is dihydroergotamine. It is used a lot for migraine sufferers, but worked fabulous for this particular NDPH patient I met at MHNI. It's definitely worth discussing with your doctors. One thing I learned up there is that everyone's brain chemistry is so different, so it's worth a try. It just didn't work for me.

Amy, I am really intrigued by the rash that you also had. You are now the third person I've met that has had this (I'm assuming it's what I and another NPDH patient has had). I really don't care what any doctors say -- I know it is connected in some way to the head pain. I actually had mine biopsied, and my derm here in St. Louis said it was very rare and he thought it may be connected -- he just doesn't know how. The rash was non-raised and wouldn't know it was there unless I looked. Took a few months and then disappeared except for a little staining if you look close. It's called Majocchi-Schamberg's disease. Basically, it's an inflammation at the capillary level. No one knows the cause according to my derm, but I keep researching it. I know of a 20 y/o NDPH young man who lives in Galveston, TX who just passed his one-year mark of headache pain -- he, too, had the "rash" on his arms and legs. Where was yours, Amy?

I keep wondering if I picked up something in either the swimming pool or hot tub in Hattiesburg, MS. that is causing the pain and possible inflammatory state. My friend from Galveston was surfing in the Gulf the day before his headache started.

B Godel or Ryan -- has either your husband or you, Ryan, had this "rash" on either your arms or legs?

Ryan, congratulations on keeping straight A's all through high school. You are such an inspiration to all of your schoolmates! You are so young -- I will pray that we can all put our heads together and never give up helping find a cure for this most difficult headache pain.

God bless you, Amy, for moderating this website -- you, too, are an inspiration to everyone you meet.

Sorry I write so much -- I am very interested in all of your stories.

Laura


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amy jane 7 years ago from Connecticut Author

Laura,

We have a lot in common! My children are 9, 5, and 2. I am so sorry that you are expiencing this pain. I'm glad that you were able to return to work. For me, being distracted is very helpful.

As for your questions, I did have a very strange rash appear when the headaches first started. It went away within a month or so. My doctors insisted that it was unrelated. I also had (and still do) pain in my joints and legs when my headache is very intense. Again, the doctors have said that it is unrelated. I did see a naturopath who felt it was all connected because they are all various types of inflammation. Her advice, unfortunately didn't work for me either.

I'm not familiar with DHE either, so please elaborate! Thanks so much for commenting a sharing your experience. I hope you are pain free soon!


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amy jane 7 years ago from Connecticut Author

Hi everyone, I apologize for not checking in sooner.

B Godel, I am so sorry to har about your husband's pain. What the doctors don't tell you is that more often then not, NDPH is resistant to medication. They are hopeful and want you to be hopeful. No medications have worked for me. Because NDPH is classified as a migraine "type" headache, there has never been a drug created specifically targeting it. It is so frustrating. You just have to keep trying things until you can find something that works.

Since your husband is a the beginning of this, I really suggest trying to figure out any possible triggers (food and environmental). It seems odd to do since he always has pain, but some triggers will make the pain even worse. It took me years to realize that chocolate made my pain unbearable. It is the difference (long term) of being able to get through the day with moderate pain or having to stay in bed.

As Ryan (headache girl) above proves, focusing on something else, as hard as it may seem, becomes a way of life for most of us. It is wonderful that you are so supportive of your husband and looking for solutions yourself. I think you should take a look at the support group at MD Junction for ideas, but also for support for you in the journey.

I understand your frustration completely. I hope you can find some solutions for your husbands pain as soon as possible.

Ryan, you are an inspiration! I am so hopeful for you, although I wanted to cry when I read how young you are. You are dealing so well with the pain by staying focused on your life and your goals and that is key to dealing with the constant pain. I hope you find a treatment that works soon and wish you much success.


B Godel 7 years ago

Laura - We had just returned home from a trip to Florida where we did spend time at the ocean. What is DHE?


Laura 7 years ago

Hi everyone. I was diagnosed with NDPH this past August. I woke up May 31 with the worst head pain of my life. We were on our way to Gulf Shores, AL with our three children who are 9, 6, and 3. After a couple of ER visits, tons of doctors, scans, labwork, lumbar punctures, physical and other therapies, medicines, and even a 21-day trip to MHNI and Chelsea Hospital in Octoberto see Dr. Rozen, I still have 24/7 head pain. I was able to return to my part-time job in November (after being off for 6 mos). I think the job provides somewhat of a distraction, but I'm aware constantly that my head really hurts. I'm on Neurontin 4x/day which sometimes is helpful, sometimes not.

Amy, you have such a wonderfully positive attitude and it's a pleasure for me to read your postings. This thing is so rare -- no one can really understand the debilitating nature of this head pain unless you go through it yourself. Just as I don't understand other types of chronic pain. I, like you Amy, try to wake each day and thank God for (finally) a good night's sleep, a great husband, three beautiful, healthy kids (who keep me going), and the support of family and friends. I still have days when I have to just cry from the pain. I still keep thinking there's a cure out there. I keep researching the topic myself and hope that by dialoguing with others with NDPH that we can all come up with something.

Along that line, I'd like to know if anyone who's been diagnosed with NDPH had been doing anything unusual in the 24-48 hours prior to the onset of pain, such as exposure to a hot tub, ocean or any unusual activity such as heavy lifting or anything that would produce a whiplash sort of motion? Has anyone else had a strange rash on their legs or arms?

My heart goes out to all of you and everyone suffering with this painful headache. I met a couple others in Michigan who are equally frustrated after getting no relief up there. On a positive note, there was a young man, who after suffering for two year with NDPH, found breakthrough relief with DHE while we were up there. It was so remarkable to see the joy on his face. He was so afraid to go to sleep, fearing the pain would be there (as it is for all of us) as soon as we are conscious in the morning. So maybe some of you might want to try DHE if you haven't already.

I'll keep all of you in my prayers and hope that each of you can try (as I try) to take one day at a time and focus on what we do have, rather than what we don't. It has taken many months for this Type A person to do this, and I'm still working on it! I have taken so much for granted.

Thanks for listening/reading.


B Godel 7 years ago

Just correcting my last post - "My husband (and me) has lots of" - What I was going to say is that My husband and I are very frustrated that it seems nothing can be done


B Godel 7 years ago

Ryan - I'm so sorry for your pain. My husband (and me) has lots of pain 24/7 and has commented that he would put an animal down with less pain than he has. Did your headache come on you suddenly? I can't believe that in this day and age, there is nothing that can take this pain away.


headache girl 7 years ago

Hi,

My name is Ryan. I am 17 years old and have been suffering with PDH for the last 5 years. Some days the pain is unbearable. I have seen neurologists, cardiologists, endocrinologists, and numerous other specialists. I have had many CT scans, MRI's, MRA's, spinal taps, etc. Recently I was placed on Birth Control to see if this would help my headaches. I am a senior in high school and have learned how to cope with the pain. I have tried biofeedback, needling, acupuncture, changing my diet, numerous medications and so far nothing has given me any relief except for the drug Sansert which has been taken off the market. I have managed to maintain an A average throughout my high school years. I know what pain is and I am hoping that one day I will be headache free.


B Godel 7 years ago

My husband has had a headache since May 2008 and was told he has New Daily Persistent Headache. We went to the Mayo Clinic in Rochester MN and had lots of test, saw lots of Dr's and that is what they came up with. Trying some meds but nothing seems to be working at this time. I feel so helpless as I want to help him in some way.


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amy jane 8 years ago from Connecticut Author

Hi Elaine - I will mention that medication to my doctor at my next visit! I am so glad that you found something to work for your headaches. It can be such a long road, and it gives me hope that I will find something eventually! Thanks again. :)


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amy jane 8 years ago from Connecticut Author

Hi Susan, thank you for the suggestions, I will research that. I have been on and off the Eat To Live diet for the past 6 months and have found that when I can stick to it I am really much better. It is so strict, so when I am feeling better I start to cheat a little. It is a high nutrient vegan diet - no meat, dairy or processed food of any kind. I'm not even allowed much in the way of carbs, so I struggle with it sometimes.

I do wish that I could figure out exactly which foods cause me the most trouble!

Thanks again for the advice. :)


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amy jane 8 years ago from Connecticut Author

Shirley, thank you so much for the well wishes and compassion. I have been doing a little better now that it is cold and dry here in the North East. Weather changes are a major trigger for me. Thanks again. :)


elaine 8 years ago

I used to suffer from the same headaches and symptoms. I was prescribed amitryptilin (I'm not sure if that's the correct spelling), and within three months, the headaches had completely disappeared! Now I just get normal headaches that are caused by stress, hunger, etc. (the normal triggers). But if I just take some ibuprofen, it goes away within a reasonable amount of time. Suggest amitryptilin to your doctor! I definitely suggest it!


Susan03 profile image

Susan03 8 years ago from Michigan

Amy Jane, I'm so sorry that you (and others) have had to suffer with these persistent headaches. I can't imagine what it would be like. I did suffer with rheumatoid arthritis for about 3 years, and Praise God that I've been able to find almost total relief, without medication, through the foods that I eat, or more specifically, don't eat. I'm thinking that there may be something in what you're eating that is contributing to your headaches. I've done a lot of research on diet, and found that what we eat affects absolutely everything about us.

I recommend, if you haven't done it already, that you do some research on "excitotoxins". Just Google it, and read everything you find on the subject. I'm no expert by any means, but I do know that excitotoxins are in just about every processed, frozen, and fast food on the market, and they are extremely damaging in so many ways.

And don't forget to drink your 6-8 glasses of water every day, starting before breakfast. There's so much more that I would like to say, but I don't want to sound "preachy". You probably know all the good health rules anyway.

I wish you success in finding an answer to this.


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Shirley Anderson 8 years ago from Ontario, Canada

This is a great hub, Amy Jane, but I'm sorry to hear about your constant head pain. My youngest daughter and my best friend have both suffered from constant strong pain for many, many years and I am in awe of how they cope. If I get a paper cut I need pain meds, I'm such a woosy.

I wish you tremendous luck in finding the answer. I think your positive attitude and grateful outlook will help you a lot.


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amy jane 8 years ago from Connecticut Author

You're welcome, megamass! Thanks for reading.


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megamass 8 years ago from Portugal

Great post! Thanks for the information!


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amy jane 8 years ago from Connecticut Author

Hi Kim, I hold that some hope for myself...that one day it will be gone just as quickly as it started. I hope that we both experience that - soon! I am at 3 1/2 years right now, and have improved very slowly over time. Learning to cope with it, and finding some relief, even if it is only occasionally, really helps me. I wish you all the best in finding a treatment that works for you, so you can get back to your life!


Kim 8 years ago

I have just reached the four year anniversary of the onset of my headache. It has been a struggle but thankfully, my doctor has developed a medicine regiment that is making this NDP headache tolerable. I am unable to work and do many things I used to because of this. But perhaps one day I will wake up headache-free in the same way I woke up with it.


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amy jane 8 years ago from Connecticut Author

Thanks so much Pete. I try to hide it for the most part! :)


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WeddingConsultant 8 years ago from DC Metro Area

Amy, I had no idea you suffered from this. My heart goes out to you.


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amy jane 8 years ago from Connecticut Author

Thank you Creative Writer33. I am glad to hear that you found a solution for your headaches. Perhaps I will look up your doctor. :)


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Creative writer33 8 years ago from New York

Great topic. I was a person who suffered from migraine headaches that would last for weeks. I found a great Neurologist that is located in Queens New York. After a series of test, he discovered that the headaches was stress related and coached me to remove myself from the stress. I also started doing yoga and it helped a great deal. It was very hard for me but I am now able to stop worrying about things that are not in my control. Good luck. The doctor that helped me is Dr. Arthur E. Farkash.


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amy jane 8 years ago from Connecticut Author

Hi Robie, thanks so much for the kind words...keeping positive is the best way to get throught this - for me at least.

jbchristensen, I am so sorry to hear that your daughter has sufferedwith this for so long. I agree, the less I focus on the pain the better I feel. Doctors always want you to track it, rate it, write it down and analyse it. That doesn't help me at all.

MDJunction (I believe there is a link above) has a group specifically for NDPH and they are very warm and helpful people.


jbchristensen 8 years ago

Amy thanks for the hub. One of my children has daily headache. She woke up one morning with a severe headache at the age of 13. She is now 27 and has had only one pain-free day in all that time. She has gone through all the meds as you have, accupuncture, massage, biofeedback, etc. all to no avail. She finds she does better with no treatment. That way she doesn't have to focus on the pain. She copes amazingly well, only occasionly having a really bad day. Those days are usually when she gets a migraine on top of the NDPH.

You mentioned support groups in your hub. I've only seen migraine, stress and cluster headache support groups and forums. Have you found some that are NDPH-specific?


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robie2 8 years ago from Central New Jersey

Amy-- thanks so much for this very personal and also very informative hub on headache. We are all so ignorant about problems that are not ours. I salute your courage and your positive attitude. I had no idea how difficult headaches could be....have never had one that didn't respond to aspirin and have never known anyone who did. You have given me a new respect not only for the seriousness of the condition but also for the bravery of people like you who deal with it every day. Thanks and thumbs up!


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amy jane 8 years ago from Connecticut Author

Hi Write-On! Best of luck to your son - seek out a headache specialist. I saw numerous doctors before getting a diagnosis.


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Write On! 8 years ago from United States

amy jane -

Thank you for sharing this vital information about headaches. My son has been having really bad ones for a while. We need to figure this out.

Write On!


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amy jane 8 years ago from Connecticut Author

Hi again Michelle, I haven't forgotten - I am swamped here! I will contact you today.


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ripplemaker 8 years ago from Cebu, Philippines

Hi Amy, that would be nice...to receive an email from you. I await that...thanks. :)


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amy jane 8 years ago from Connecticut Author

Hi Michelle, I have been meaning to email you with an update. Thank you for you continued compassion(and Daisy too!) I will email you in the morning! :)


ripplemaker profile image

ripplemaker 8 years ago from Cebu, Philippines

Hi Amy,

I do pray that people would discover "relief and cure" for persistent headaches. I continue to wish you well every time you come to my mind. You are so right, one day at a time is something to be grateful for. Sending loving thoughts to you always, michelle and daisy


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amy jane 8 years ago from Connecticut Author

Hi Michelle,

I am glad you and Daisy did some celebrating! I am pain free at the moment, but I did have a rough time yesterday. There was an extreme weather change here which is a major trigger for me. I feel good today though. One day at a time...any and all progress is worth celebrating!


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amy jane 8 years ago from Connecticut Author

Hi Hovalis,

I am so sorry to hear that she has been going through this for 9 years. I agree, the withdrawl from the medications is horrible and that is part of what keeps me from trying every new thing out there. I too was on an antidepressant that had been shown to help cut down on the headaches. I was not depressed when I first went on them, but I don't really know how long I would have been alble to handle the pain without getting depressed. I had to go off this medication rapidly when I became pregnant with my third daughter. It was two weeks of hell. Worse than any headache really.

I really recommend the support group listed above. I am a member there too, although not very active. Sometimes I lurk around and listen. It is amazing how much it helps my attitude towards the situation. They also talk about different treatments, alternative medicines, suggest doctors and discuss how to bring more attention to NDPH.

The medical community doesn't pay attention to NDPH because (my theory only) we are not a good market. There is no money in finding a cure. We just get clumped in with migraines and they push all of the same medications. This is often true for Cluster headaches (I have a hub about that too) which my brother has suffered from for 20 years. There is some research going on for clusters, luckily.

Thank you for sharing. Your friend is lucky to have you. Staying patient and supportive of her is really important.


ripplemaker profile image

ripplemaker 8 years ago from Cebu, Philippines

You are right Hovalis. I hope so too.


Hovalis profile image

Hovalis 8 years ago from Australia

You know, Ripplemaker, what I want? Is for the medical profession to give Persistent Daily Headache the attention it deserves, so that the condition gets the same attention as Diabetes, for example. I have this feeling that it is one of those hidden conditions that no one wants to talk about. I really, honestly, believe that there is a cure to this. And that it is just around the corner. If only it gets the attention it deserves.


ripplemaker profile image

ripplemaker 8 years ago from Cebu, Philippines

Amy, now you know what I want to do when I hear those words from Hovalis. But not many are as open as you are. Anyhow, Daisy and I went to eat pizza in honor of your good health. Yes, we really did! ANd we were smiling all throughout the meal. You made us so happy actually. I continue to pray for you :) and send you loving thoughts as often as I can.


Hovalis profile image

Hovalis 8 years ago from Australia

Amy, she's had the condition for more than nine years now, and one thing she's discovered is that everyone who she knows who has it has different contributing factors. That is what makes it so difficult to diagnose and treat. In her case, she knows that when her neck goes out of alignment it gets worse. Needless to say, she has a regular appointment at the chiropractor! It helps with part of it, at least.

The trouble with going on medications is not only the effect of them, but the withdrawal. This latest one took her almost 6 months to withdraw from. She related another one (her doctor had decided that her headaches were related to depression and put her onto medication. It was the other way around) were more dramatic.

I have seen the effects, but I can't imagine what it is like to live with this condition. And....yes... after hearing what my friend has to say, living with pain for even a day is a cause for celebration. The hardest thing for 'normal' people to realise is what it is really like to live with a chronic condition. I've only seen the effects second hand and I would not wish this on anyone.


amy jane profile image

amy jane 8 years ago from Connecticut Author

Lol Michelle! Thanks. And thanks again. A day without pain is worth celebrating! :)


ripplemaker profile image

ripplemaker 8 years ago from Cebu, Philippines

I can't resist... YEY!!! (can i jump up and down?) And here's a giant hug ((((HUG)))


amy jane profile image

amy jane 8 years ago from Connecticut Author

Thanks Michelle. I am today. :)


ripplemaker profile image

ripplemaker 8 years ago from Cebu, Philippines

Hi Amy, hope all is well with you. :)


amy jane profile image

amy jane 8 years ago from Connecticut Author

Hi Hovalis,

I am always sorry to hear of someone else suffering like this. I have heard the side effects from the anti-epilepsy meds are the worst, so I refused to try them. It is not an improvement you can't get back to your life. She must be so frustrated.

Thank you for the kind words of encouragement. I hope your friend find a medication that will work for her as well.

Hi Bob, I am glad you found this useful and put things in perspective. Understanding what your wife is going through and being supportive of her is the best help you can give her! Thank you for reading and commenting. :)


amy jane profile image

amy jane 8 years ago from Connecticut Author

Hi Michelle, yes, I think we have the time correct now. That is my pain pattern exactly. I will email you at 12 your time to let you know. Thank you, you are an angel! :)


Bob Ewing profile image

Bob Ewing 8 years ago from New Brunswick

A very detailed and informative hub, I do not get headaches but my wife does ( Hmm) . This hub has put things into some perspective for me and I will share it with my wife later today. Thanks.


Hovalis profile image

Hovalis 8 years ago from Australia

One of my friends suffers from Persitant Daily Headache as well. The experience you describe here is much like she has described to me. Giving up work was the hardest thing for her, and the other is well meaning people saying "well, I did this and my headache went right away!". It's just not that kind of headache. Hers get worse with changes in weather, and she's found other contributing factors. Like you. she has also tried various medications, the latest an epilepsy medication. Unfortunately the side effects (the headache was gone, mostly, but instead she couldn't think straight).

My thoughts are with you and I hope that your doctors can find your specific trigger and come up with a workable treatment.


ripplemaker profile image

ripplemaker 8 years ago from Cebu, Philippines

Hi amy, my time sat 12 noon right? That will be around 10 pm, friday (your time). Kindly log in to YM. I will keep it open so I know you are ready. I don't know if this is yours, but many times during the day I could feel my head throbbing-forehead, top, back of the neck. So started "healing" already. Till tomorrow then. God bless. :)


amy jane profile image

amy jane 8 years ago from Connecticut Author

Yes, Michelle! It is at the back of my neck today too. It is usually just the front of my head, but I am having a "high pain" day and it is in the back of my head and neck. I was just going to go find a heat pack for my neck. :) Thank you so much for the prayers. I got your email and will respond as soon as I get my girls to sleep.


ripplemaker profile image

ripplemaker 8 years ago from Cebu, Philippines

Yes Amy, maybe an ENT doctor can check if your sinuses are okay. My polyp really is a pain and all the 'phlegmy' stuff in our sinuses can also cause headaches. Just curious, is the pain radiating at the back of your neck too? As I was meditating and "praying" for you, I could feel heaviness in that area. May we all be headache free! :)


amy jane profile image

amy jane 8 years ago from Connecticut Author

Michelle, you are so sweet and compassionate. Thank you so much for the good wishes and across the world healing hugs!

There are so many factors that can contribute to headaches. I am still trying to get a grip on them all. My MRI showed some sinus problem, but my old doctor never addressed it. I guess I will have to investigate that next.

Thanks again for your kind words - I hope you remain headache free! :)


ripplemaker profile image

ripplemaker 8 years ago from Cebu, Philippines

Hi Amy, I used to experience a lot of headaches too. I recall, I finally found myself going to the doctor when bending down to pick something up felt like my head was going to crack. Sometimes I felt so terrible I felt nauseous and gave up dinner or otherwise throw up. I finally found out that I had sinusitis and a polyp on the bridge of my nose. Of course, steroids medication, lessening the factors that triggered sinusitis (like stress, changes of weather, dust) and meditation and taking vitamins somehow helped. After several years, I am much better now. But every so often (esp. when I am tired) I get a dose of that terrible headache.

Even with all these things that happened to me, I sill can't begin to imagine the chronice headache you are having. Gee, I don't think I could take it Amy. I do pray that you will discover a cure and that one day, you would be free of pain. I wish I am with you right now so I could do a bit of "healing." Sending you a hug Amy. Take care. {((( hug ))}


amy jane profile image

amy jane 8 years ago from Connecticut Author

Thank you so much, Desert Blondie. The fact that you no longer suffer from these headaches is wonderful and inspiring for me! I have heard many people say that the pain just stops at some point and never returns. It is all very mysterious. Thank you for the encouragement. :)


desert blondie profile image

desert blondie 8 years ago from Palm trees, swimming pools, lots of sand, lots of sunscreen

It took me all this time to read this hub, as I too once suffered from severe chronic daily headaches! Sometimes they weren't truly even daily, just continuous day into night into day...I'm sure you know. I was almost superstitious about reading this for fear I'd somehow bring them back! BUT, my deepest sympathies for your pain, and my admiration for choosing to not let it put you to bed, ignoring your children or your life. Hail to Warrior Amy...truly, no sarcasm here..just praise.


amy jane profile image

amy jane 8 years ago from Connecticut Author

Hi aquaruancore, thank you for reading and commenting.


aquariancore profile image

aquariancore 8 years ago

I found this article very informative and interesting as some may be diagnosed as having migraines.


amy jane profile image

amy jane 8 years ago from Connecticut Author

Thank you so much, Life by Design, I appreciate your kind words of encouragement. I am feeling particularly hopeful today, even though I am having a high pain day. I am going to try a new nutritional program that other people have had success with - I just have to keep trying new things. :)

Thanks again for reading and commenting.


Lifebydesign profile image

Lifebydesign 8 years ago from Australia

Hi amy jane, this is such a sensitively written and informative hub.

I just can't imagine what your life must be like on a daily basis. It sounds like you've tried many things so I'll hold back on any tips :-) except to say I'd admire your courage and determination in not letting it hold you back. And all the besst for a speedy cure for you and other sufferers.


amy jane profile image

amy jane 8 years ago from Connecticut Author

Hi rmr, thanks so much. it amazes me as well, how we can apapt and learn to live with pain. Still, we should not have to! I just try to stay hopeful, that eventually I will find something that works for me, and i hope that for you too. Until then, we will be warriors! :) I like that, it makes me feel strong, on the inside at least.


rmr profile image

rmr 8 years ago from Livonia, MI

I feel for you, amy jane. I don't get headaches, but a shoulder injury has brought pain every day for the last 8 years. Even on low pain days, it just gets old. The things that a person can adapt to, always amazes me. You are indeed a warrior, to carry on through the pain!


amy jane profile image

amy jane 8 years ago from Connecticut Author

THanks Uninvited Writer, I am glad you found it helpful. The spring is my worst season as well, although the humidity in the summer can get pretty bad too. I hope the dry weather gets here soon - for both of us! I have considered moving to the desert...


Uninvited Writer profile image

Uninvited Writer 8 years ago from Kitchener, Ontario

Thanks for this. I get a lot of headaches...more in the Spring and when it's raining... I've had a headache every day for the past 2 weeks. I did find that while I was going to a chiropractor regularly that I got less headaches.


amy jane profile image

amy jane 8 years ago from Connecticut Author

Thanks Sweetie Pie, I hope some of this will help you. Thanks for reading and commenting. :)

Hi Deb, thanks for the encouragement. :)


Blogger Mom profile image

Blogger Mom 8 years ago from Northeast, US

Oh, this is horrible. I hope you find permanent relief soon and that others will benefit from your hub. - Deb


SweetiePie profile image

SweetiePie 8 years ago from Southern California, USA

I occasionally get headaches that wil not go away, so the tips in this hub may be of help. Thanks for sharing :).


amy jane profile image

amy jane 8 years ago from Connecticut Author

Crash Jones, thank you so much for sharing your story. I have found that connecting with people who understand what you are going through can make a huge difference in how you deal with the day to day struggle. As much as I don't want anyone else to go through this, and it makes me sad to hear, it gives some perspective, you know? We are not alone.

I had been exploring the botox option recently and have heard little to make me think it would work for me, either. I have tried neuromuscular / trigger point massage as well, and although it was my specialty as a massage therapist and my clients had excellent results with it for the most part, it gave me only very temporary relief. I will ask my doctor about the injections, because no one has ever suggested that to me.

I hope you are able to return to work soon. I know that feeling of not being able to do everything you used to can be downright depressing. I too have many days where I simply cannot write or sit at the computer at all, and it drives me crazy. Every little step closer to normal is progress. I have my fingers crossed for you too - hold on to that hope and I will too... :)


Crash Jones profile image

Crash Jones 8 years ago from Mississippi

February, 14 2005. That was the day I experienced my first migraine. Since then I have taken innumerable medications (including botox), been to neurologists, pain management specialists, ear, nose and throat doctors as well as trying neuromuscular massage. During this time I have been diagnosed with several degenerative diseases (none of them proving valid), brain tumors, spinal tumors, and TMJ (also proven not to be an issue).

According to my current neurologist, who has improved my life greatly through monthly trigger point injections, nerve blocks and a vastly scaled down drug regimen, I suffer from chronic (or daily persistent) headaches as well as chronic migraines. I literally have two headaches at once at least a few days a week. Other days, I deal with the regular, vanilla low to high pain headache.

So, I suppose I could have found a shorter way to say this, but, I identify. I am now attempting to re-enter the workforce, and in the meantime am taking care of my nine-year-old step-son and doing a lot of Mr. Mom duties. I enjoy it, but wow, I miss work. I used to write for a living, but only recently have I found myself capable of concentrating well enough to put together more than a few paragraphs before the photosensitivity issue kicks off the beasts in my head.

 I hope you eventually find something that works for you. I'm out of homeopathic and herbal remedies, but I have hope and a great wife. So ... fingers crossed ... on I go.


amy jane profile image

amy jane 8 years ago from Connecticut Author

Thanks so much for the encouragement Steph, donnalee and Minnie's Mom. :) I really appreciate all of the support. You guys are great! :)


Minnie's Mom profile image

Minnie's Mom 8 years ago from Seattle, WA

I can't even imagine what you are going through on a daily basis. When I get one little headache a month I am down for the count. You are a real trooper ; )


donnaleemason profile image

donnaleemason 8 years ago from North Dakota, USA

Well, I hope that they find something for you soon.


stephhicks68 profile image

stephhicks68 8 years ago from Bend, Oregon

Hi Amy, boy, I am so sorry that you have these headaches. I cannot imagine suffering on a daily basis, even on a "low pain" day. This should be helpful to many people to understand that they are not alone, or that their friends or family members are truly suffering from more than just a migraine.


amy jane profile image

amy jane 8 years ago from Connecticut Author

Thank you, cgull8m, for the encouragement and suggestion. When I am having a high pain day, it is almost impossible for me to sit still. I will try your advice on a low pain day, as a preventative measure. Thank you again for taking the time to comment. :)


cgull8m profile image

cgull8m 8 years ago from North Carolina

Amy Jane, I hope you are better now. My mom used to suffer from Migraines.

Did you try Meditation? If not please do so, try to sit or rest in the bed and try to be thought free for 10 to 15 minutes daily, you will notice a difference. I used to get headaches frequently but ever since I did meditation I used to get only very rarely. Here is a meditation article. http://tinyurl.com/4ug2rp


amy jane profile image

amy jane 8 years ago from Connecticut Author

Thank you all for the comments and the kind words of encouragement. I wrote this hub mostly on a low pain day, and was hoping to not sound bitter about the whole experience. I was really hoping it would help someone else who was suffering understand a little more. Being thankful for all that is good in my life is the best way for me to get through the painful days, like today.

Thanks again for the support, John. Rob, Ahmu and Georgia.


ahmu profile image

ahmu 8 years ago

nice hub u make


Rob Jundt profile image

Rob Jundt 8 years ago from Midwest USA

My hope is for a permanent cure for you and others suffering as well. I have never heard of this type of headache before. Please keep us posted on any progress. Blessings.


Georgiakevin profile image

Georgiakevin 8 years ago from Central Georgia

My deepest symapthy for your struggle with your headaches. I have not experienced any head ache like you have. You did a remarkable job with this hub. I am very impressed!


John Chancellor profile image

John Chancellor 8 years ago from Tennessee

When I start to feel a bit sorry for some difficult period I am going through, I stop to give thanks ... no matter how bad some period may be, I know that I should always be comparing my life to what it could be. I can only say I am so grateful ... I can't remember the last time I had a headache. So try as hard as I might, I really can't imagine what it must be like to suffer with constant pain.

I do hope that you will find some permanent relief soon.

I hope I never need this information, but thanks for providing it. I am sure that there are lots of people who had no idea about these type of headaches.


amy jane profile image

amy jane 8 years ago from Connecticut Author

Hi tjmum, I am sorry to hear that your husband is suffering - all of those things can certainly contribute to headaches, but are probably not the cause. Finding the food and environmental triggers can help him have some control, hopefully.

You may also want to check out the support group in the links above. There are many people there (some in the UK too) that have good suggestions for things to try (nutritional supplements, doctors, etc.) They are a warm and friendly bunch and very supportive as well.

I hope he will be pain free soon. :)


tjmum profile image

tjmum 8 years ago from Isle of Wight

My husband has suffered from headaches every day, as you say, some light days, others that will debilitate him completely. He was advised by his doctor to take aspirin (which gave him an ulcer). He still sufferes now but I don't think the doctors over here have heard of this condition - they have tried to tell him about stress, smoking (which I agree with!), sleep (he will say if he has too much sleep he has worse headaches) and diet. Now I've read this hub it gives me pause for thought. Perhaps we should try and see if he has any dietry intolerances that increase his headaches.

Most people think that headaches are nothing to worry about but I have seen first hand that this is no joking matter. My sympathies that you also suffer, and a great hub. I hope it opens other people's eyes too.

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