New Daily Persistent Headache
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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 through out 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. NDPH 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
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- Online Support Group
New Daily Persistent Headache (NDPH) Support Group at mdjunction.com: Give and get help. Share experiences and meet friends with the same health challenges. - New Daily Persistent Headache
Although New Daily Persistent Headache shares some symptoms with tension-type headache, it is unique in that patients can often pinpoint the date their headache began. Detailed information.
My Story
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. 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 NDPH.
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?Daily Headache Discussion and Explanations
Headache Triggers
Internal:
- Chronic fatigue, too little sleep
- Emotional stress, letdown after stress
- Hormonal Fluctuations
External:
- 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:
- Nutrasweet (aspartame)
- Nuts
- Bananas
- Alcohol
- Soy
- Chocolate
- Avocado
- Aged cheese
- Processed meats
- Onions
- Caffeine
- Fermented foods
Headache Triggers
What NDPH Is Not
It is not a migraine. This is precisely why it 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 Headacheby 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:- Headache is not all in your head, but often has physiological causes.
- Sinus infections and allergies are not frequent causes of headache.
- Stress is NOT a cause of headache but rather a modulator of headache.
- Most headache sufferers do not have temporomandibular joint (TMJ) syndrome.
- 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
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 NDPH, 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.
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Comments
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. :)
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.
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!
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.
nice hub u make
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.
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
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. :)
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.
Well, I hope that they find something for you soon.
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 ; )
Thanks so much for the encouragement Steph, donnalee and Minnie's Mom. :) I really appreciate all of the support. You guys are great! :)
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.
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... :)
I occasionally get headaches that wil not go away, so the tips in this hub may be of help. Thanks for sharing :).
Oh, this is horrible. I hope you find permanent relief soon and that others will benefit from your hub. - Deb
Thanks Sweetie Pie, I hope some of this will help you. Thanks for reading and commenting. :)
Hi Deb, thanks for the encouragement. :)
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.
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...
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!
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.
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.
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.
I found this article very informative and interesting as some may be diagnosed as having migraines.
Hi aquaruancore, thank you for reading and commenting.
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.
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. :)
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 ))}
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! :)
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! :)
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.
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. :)
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.
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.
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! :)
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. :)
Hi Amy, hope all is well with you. :)
Thanks Michelle. I am today. :)
I can't resist... YEY!!! (can i jump up and down?) And here's a giant hug ((((HUG)))
Lol Michelle! Thanks. And thanks again. A day without pain is worth celebrating! :)
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, 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 through out the meal. You made us so happy actually. I continue to pray for you :) and send you loving thoughts as often as I can.
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.
You are right Hovalis. I hope so too.
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.
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!
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
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! :)
Hi Amy, that would be nice...to receive an email from you. I await that...thanks. :)
Hi again Michelle, I haven't forgotten - I am swamped here! I will contact you today.
working
tjmum says:
2 months ago
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.