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My Journey Through Hell, Unbelievable Facial Pain, Known as the Suicide Disease!

Updated on November 18, 2014

The Beginning, The First Five Years

July 29, 1989, a day that I will never forget, was an ordinary work day. I was in south Georgia assisting one of my clients with their payroll system. As a system's accountant and doing consulting as a business, I had a very happy career. I was driving home from south Georgia to Athens, Georgia, my home, when all of a sudden a bolt of lightening went through my lower front teeth. The pain was so unbelievable. I will attempt to describe it: It was like someone had removed my lower front teeth, had my lower front teeth being shocked by electricity, a stabbing pain, aching, and burning. I was on my way into a lving hell with the facial pain effecting everything in my life for the worst for over 25 years! For the first five years, I just cried, took tons of medicine, went through a ton of tests, and was a guinea pig for all kinds of weird procedures. My initial diagnosis was "atypical facial pain" I wriote the National Organization of Rare Disease. Someone just put a small newpaper clipping in a letter back from NORD stating that "atypical facial pain is a condition where a woman thinks her face is hurting, but it is not. It is rare psychological disorder." They were wrong, but I did not know that until five years had passed.

Depiction of the Trigeminal Nerve within the Brain

Source

The "Root" of the Problem

After seeing dentists, oral surgeons, orthodontists, ear, nose and throat specialist, having ungone all type of dental and medical procedures and tests, I was given a lead with an oral surgeon at a party, Dr. Gerard B. Creagh Jr, DDS. He was different from other doctors because his wife suffered from a terrible related disease called hemi-facial spasm. Her face was effected by a different portion of the trigeminal nerve, and she would have involuntary spasms that caused her face to draw up very unnaturally. He did a series of diagnosistic tests by injecting my facial pain side, which was now on the right side only. My facial pain grew larger and more intense as time when by, and the pain would switch from my lower teeth to my right side sinus area, but the pain was from deep within my mouth to my cheek skin. After these tests, Dr. Creagh told me I had trigeminal neuralgia of an atypical nature. This diagnosis took 5 years. Half of all patients kill themselves within the frist two years! The relief from the shots he gave was very short-lived, but finally, I was not crazy, I had a true diaghosis.

Unbelievable Pain! More women suffer from this than men!

Even if you cannot stand the pain, keep trying to live your life. Once you rule out other diseases, you have to force yourself to forget your hurting to live!
Even if you cannot stand the pain, keep trying to live your life. Once you rule out other diseases, you have to force yourself to forget your hurting to live!

Three Types of Brain Surgery I Had

 
 
 
Treatments
Side-Effects
Results
Microvascular Decompression
Invasive brain surgery done through the skull. The surgeon puts a piece of felt between the nerve and the artery compressing the nerve.
If done early in the diagnosis, very helpful. Most people miss out on this procedure until the nerve has damage making it less effective. I had very little relief from this surgery done by the surgeon, Peter Jannetta, who was the inventor of this procedure.
Radiation Rhizotomy
Insertion of long needle-like device into the front of the face, entering the brain stem. Surgeon electrocutes the nerve to damage it. This is very painful as you are awake in the surgery.
Pain relief can be achieved, but normally the pain returns. I had roughly three months of numbness, which was preferable over the pain, but soon after my nerve regenerated, and the pain returned.
Gamma Knife Procedure
The least painful procedure. You wear a device, or head gear that is screwed into your skull. Your surgeons review many MRI's, where they plan your treatment. Then you are taken to the gamma ray knife. Multiple, numerous beams are then radiated through your head to one central location where the surgeons deaden the nerve causing the issue.
This procedure helped me the most. I felt relief immediately after the surgery. I wanted to do it again, but Duke and The Univesity of Utah said it was too dangerous.
This disorder needs to be heavily researched by the patient to come up with your own personal way to recovery!!!

Study Hard, Get the Facts, and Plan to Live!

The best advice I can give patients who have facial pain is to search for the right doctors. Read everything you can on the treatments and drugs. Get your family to help you right away. You will not die from this disease, but you will become more and more depressed. The depression is a result of pain, not the other way around. Get psychiatric help immediately to help you cope with the effects of the disease. Many psychiatric medications assist in sleeping, keeping a reasonable level of happiness, and be sure to not take too many drugs. You can become a zombie if you take too many. Remember you are not alone. Thousands of people deal with pain like this everyday. Live your life to the fullest. If your suicidal, call a hotline. Use the hotline when your family is too tired to listen or help you. Get on with your life. Let the pain be a side issue, not the first issue. You will not die so learn to live with biofeedback, help with counseling, and selecting the right procedures for you. NEVER ACCEPT IT IS ALL IN YOUR HEAD! WELL, IT IS, BUT NOT THE PART WHERE YOU ARE MAKING IT UP!

Another Woman's Journey

Another Example of a Person with TN

Here is a short video of another woman's suffering with trigeminal neuralgia. This lovely woman has had the treatment, microvascular decompression three times, unsuccessfully. It takes courage, strength of will, determination, and close healthy relationships to manage TN pain. This video shows how she has a very difficult life, like mine before my last third brain surgery, gamma knife surgery, and how she deals with it on a daily basis. This patient is courageous, intelligent, and has the love her of husband and friends. Please watch it if you want to know how it effects your life so drastically.

Exactly where is the problem? Deep within the Brain!

The three areas that are effected. Tri means three major nerves that go to the face.
The three areas that are effected. Tri means three major nerves that go to the face.
This shows the angle of the microvascular decompression and getting to the nerve.
This shows the angle of the microvascular decompression and getting to the nerve.

Advice for Facial Pain Sufferers and A Summary of My Journey

I feel that I can help someone with facial pain by alerting them to this condition, and by asking their doctor to rule out every other possible cause for the facial pain. There is no definitive test that says you have trigeminal neuralgia. It is a research and rule out other problems. You must do this quickly so that if you have trigeminal neuralgia, you can get treatment, especially surgery before months or years have passed. If your doctor and specialist can find no tumor, no dental work, or any other causes for your pain, make a suggestion and ask your doctors if you could have trigeminal neuralgia. They will give you tegretol to see if it helps, which in some people it does, but for me, it did little. Then if you feel confidant that you have this condition do one of the brain procedures soon after the diagnosis. The microvascular decompression would be first as it does not harm the nerve. However, if it does not work, I would recommend the gamma knife procedure. Be firm with your doctor that you are hurting, and the pain may make you seem crazy, but it is real and needs treatment early so that nerve damage can be provented.

I now live a very happy life, with pain, as I regulate my pain with medication, proper sleep, and with positive life decisions. I do biofeedback constantly. I don't cry. I don't moan. I can act very normal even though I am hurting like I have had rootcanals done on all my right side teeth! It becomes where you have to make yourself live. The gamma knife procedure worked the best for me. I would recommend it highly. But please go to a place where they are consistently treating trigeminal neuralgia. Don't be a guinea pig like I was in the beginning. I thought the doctor's had all the answers. They don't. You must be your own patient advocate. For those that want to contact me about your facial pain, please do through this site. I will try to answer any questions you may have! Good luck and hopefully you won't hurt for the number of years I have. From 1989 to now, I have been in pain everyday at some level, now less than ever, but still in pain. I want my life to be remember as what I contributed, not the fact I have a pinched nerve in my brain!


The Patient Advocate! Me!

Source

Gamma Knife: The Surgery that Worked for Me!

Post Summary: Contact me for my opinion of options you have.

Since I have gone through so much, I may be a great contact just to bounce ideas on your treatment plan, I would love to help anyone who is suffering from TN. Please contact me through this forum, and I will be glad just to listen or give advice. Whatever you need, you are not alone.

Please sign the World Health Organization link petition so that this disease is noted as being serious to health of individuals. Your signature makes a difference!


FACIAL PAIN SUFFERERS

How many people are having problems with facial pain with no diagnosis?

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    • profile image

      Cat 44 hours ago

      A la lecture de votre article , je vois bien que vous parlez de ma douleur , même si il y a le décalage du langage ; pas de traitement , pas,de solution , pas de soulagement du côté médical du moins ; j’arrive depuis 2 ans à contenir ma douleur avec un régime diététique , des compléments al!mentaires , des séances de yoga et de méditation ; j’ai une vie presque normale

    • Larry Fish profile image

      Larry W Fish 7 months ago from Raleigh

      Reading your article, Leslee gave me some insight into what I may be seeing in the future. Five months ago I started to get pain in my right eye. It felt like someone jammed an ice pick into it for a split second. My eye doctor found nothing. My family doctor diagnosed me with Trigeminal Neuralgia. I was sent to a neuro-ophtamologist and was put through a battery of tests. Again nothing wrong with my eye. I have to see a neurologist, but couldn't get an appointment until December. I am now on the max dosage of gabapentin, 3600 mg a day and I still get pain when I shave, brush my teeth, eat food, blow my nose, just touch the right side of my face in a certain spot. A couple of times the pain dropped me to my knees, it was so severe. Actually I sleep very well at night, the gabapentin does make me tired and sleepy, but it is basically dampening the pain. I'm sorry you went through so much Leslee. This is not what I wanted to happen as I approach 70.

    • Lezley profile image
      Author

      Leslee Harding 8 months ago from Orem, UT

      For those who want to make comments to my article, they need to make a new comment in order for me to approve it's publication. If it is the same comment as before, I will not publish it. Debating issues is not going to be used as well. I suggest you write your own Hubpages to have your story publish. The data I was given was factual at the time I publish this. I got my research from various publications. The fact are that I am a member of 6 Facebook page groups, and suicide is a thought I see everyday by the posting of fellow sufferers. The actual statistics of deaths are frankly, undetermined as many suicides are not reported by cause. So the facts are not there to substantiate the claim of half of people that commit suicide are from trigeminal neuralgia is an opinion of a doctor, not mine. There is no way, in my opinion, we can truly know the suicide rate from this illness. But I can say I tried to commit suicide from it, and I was in a coma for three days. I had taken 360 pills. I will never do it again as there are treatment options that have made my life bearable. So if you have this illness, do not attempt suicide as there are options. I have a much better life now since my 2011 gamma knife surgery. I would ask you to contact the national suicide. Hotline to prevent any kind of harm to yourself. I did not label this illness the suicide disease, doctor's did.

    • Lezley profile image
      Author

      Leslee Harding 8 months ago from Orem, UT

      You may have the problem as you state, but the suicide issues I have witnessed as generations before were considered crazy. They were treated as if they did not experience extreme pain. The statistic may be less now, but at one time, I read these deaths were true. I'm not comfortable having the most painful condition known to mankind being lessened in its description as I know many people who are having severe problems making day to day. They are refused treatment. They are refused disability. I can't tell people enough how hard it is to live with this.

    • profile image

      Mark sisemore 8 months ago

      Calling this the suicide disease is just wrong. In the article it was stated that 1/2 of patients commit suicide in the first 2 years. This not the cause. People may think about it but most don't act on it. I think the pain is bad enough without having people becoming anxious that they may kill themselves. Stay strong. I've had this tn1 and tn2 for 20 years. Keep looking for help.

    • Lezley profile image
      Author

      Leslee Harding 10 months ago from Orem, UT

      I also take propranalol HCl, which is the generic. It is a blood pressure medication. I had one month with no attacks. Unfortunately, I have moderate to low blood pressure so I cannot take enough to eliminate my attacks. I also am scared that my blood pressure will drop, and I may fall. You must weigh the risks. So please consult with your physician before taking this medication. Ask about the history of your blood pressure. If you are having pre-hypertension or hypertension, there are two benefits to this medication. My advise is talk to your doctor and see a history of your blood pressure.

      I am planning to reedit this article soon as it has attracted a following. There are other articles on Hubpages related to facial pain. Search for them

      Unlike the medical professionals, I feel each patient's pain is unique and could be caused from a variety of reasons. Finding your cure is hard as most physicians label facial pain into two categories when there is a multitude of reasons you may be experiencing this condition.

      Just because procedures or medications do not work for your pain, it doesn't mean you are not hurting. It means that they cannot find out why you are so hang in there. Over the 3 decades I've been hurting things are getting better. I may write what to do if you have pain with no relief section.

      Good luck. Never stop believing in yourself

    • profile image

      PainFilled 10 months ago

      Hi Kaleemontana,

      What was the heart medicine? 30 years of relief?!?! Oh, how I hope it will help me--even if not as long.

      Thank you.

    • profile image

      Kaleemontana 10 months ago

      Great article....I too suffer from TN and was diagnosed in 1989. I was given a medicine for a heart issue and found,out that it made the TN stop, it was Inderal. It worked for almost 30 years and finally stopped working this year. I am back to having pain in my head and face. My Drs already knew I had TN so we went right to Gabapentin. We will see where we go from here and how the meds work. Praying for those who are in the same boat. Be strong.

    • profile image

      B Hadnagy 10 months ago

      I have atypical facial pain probably related to MS. I was diagnosed with the AFP first after having migraines for years. I developed AFP on and off after major stress episodes. Then the AFP came back and never left. Years later, I was diagnosed with a mild form of MS. Occasionally, the AFP will switch sides, but not often. My neurologist now believes it is related to a lesion in my brain from the MS.The pain from the MS and AFP is fairly well controlled with meds. Bless all those that have TN.

    • Lezley profile image
      Author

      Leslee Harding 10 months ago from Orem, UT

      As far as Ivermectin, I have never heard of this medication until "Concerned" posted about it. It is a drug associated with ringworms. If it worked for you, then I am happy that you are pain free. I believe facial pain is not caused by one thing. I believe it is very complex and hard to solve. I am still waiting for s complete cure and am going to ask my doctor to give me a dose of this medication. I was bitten by ticks and had ringworms when I was young. If this medication helps, I will post my results.

      The fact that doctors do not know the brain very well is evident in my quest for a cure. There are millions of people suffering and a "one solution fits all" approach to this complex organ makes no sense. If you have had surgery and it did not help, or tegretol did not help, or nothing helps, it does not mean your pain is not real. It is your body, and you know it best.

      Don't give in to letting others convince you that you are not hurting. Just do what you can to live your life and find YOUR CURE.

      KEEP A JOURNAL.

      GO GET MENTAL HELP.

      MAKE A LIST OF THINGS TO DO THAT DO WORK AND DO THEM.

      JOIN FACEBOOK PAGES ABOUT THIS. YOU WILL LEARN A LOT AND GET SUGGESTIONS

      DONT GO BACK TO DOCTORS WHO MAKE YOU FEEL BAD.

      DO NOT END YOUR LIFE. KEEP HOPE ALIVE. WE WILL EVENTUALLY FIND YOUR CURE

    • profile image

      A fellow sufferer 10 months ago

      Hi to the person who posted ivermectin works. Can you pls elaborate on that . How are you feeling today . I have been suffering from 3 years now and have exhausted all surgical options ..

    • profile image

      Concerned 14 months ago

      I've had trigeminal neuralgia for 20 years. Microvascular decompression ,gamma knife,cyber knife . Nothing helped . Contracted scabies last year. Took 2 rounds of Ivermectin . Pain went away. Slowly stopped taking Tegretol . Pain free 1 year , no meds. I have my life back. My doctor dismissed this. I so hope this helps someone else.

    • profile image

      Leslee Harding 19 months ago

      I'm sorry to hear this. Please join the Facebook groups for support. Eventually you will find doctors who can help you deal with this. My best surgery was gamma knife performed at Duke in North Carolina. Keep records of what doctors you see and apply for disability. You will get it if you have at least 2 doctors say you are permanently disabled. Use your best moments for your family. Don't worry about a perfectly clean house and set your priorties. Get the book "Striking Back". Good luck!

    • profile image

      wardchakira 19 months ago

      Hi Leslee, thank you for sharing your story, I was diagnosed with Trigeminal Neuralgia this past January, and it has completely robbed me of my life. My pain is beyond extremely severe, and every time a tear drop falls from my eye it makes me want to scream. I've lost my career, and now that my husband is the only one working, we are struggling to pay for my medical care, prescriptions, and the household bills. My daughter took it apon herself to start a fundraising campaign with CrowdRise, but it hasn't been successful at all. There's no way I could live the rest of my life being tortured....I'm trying to remain strong, but there are days that I want to throw in the towel. Unfortunately, in my county the majority of the programs they offer are for single parents and children only. ....I don't know what to do.

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