Help!

1

Hello fellow TN sufferers and supporters. I have had ATN for ten years and in the last two years it has become bilateral and almost impossibel to live as a husband and father. I have had three neurologists, three/four pain management docs and have been on 10 - 12 different types of meds as well as over a dozen MRI's/CT scans with the most recent being in April 2011. The doctors are stumped due to the fact that the MRI's and CT scans do not show the usual nerve/artery/vein problem that is common for TN. The meds provide no relief (I have been on anywhere from 50mg - 150mg daily of hydrocodone while taking the standard issue carbatrol, clonazapam and other meds) Nothing even fades the pain. The doctors are hesitant as to which surgery to perform because I clearly present as an ATN sufferer, however, the tests do not show a clear cause. I have been in and out of hospitals, ER's, doctors offices and cannot get the pain to stop. Some of the doctors have suggested procedures which are considered experimental by insurance companies which means no coverage for the procedure. I have had several appointments with the Cleveland Clinic but have had to cancel because I do not have the financial menas to get there for treatment. Does anyone know of a doctor or facility that offers pro-bono work for cases of ATN that are unresponsive to any meds? Some of the meds actially make the pain worse which leads the pain management doctors to consider something called a "parabolic effect" certain pain meds can create in people. I would love to put my face through a plate glass window or have a bat right to the face. The pain is unbearable and I need help/feedback/guidance.

Thanks, -Chris

I am trying to post this directly to the Atypical Trigeminal Neuralgia Group.....

2

Hello, Chris.

I wish I could answer your question regarding "pro-bono" work for cases of ATN unresponsive to any meds.

Like you, I've been symptomatic for a long time, and they are unable to find the offending vessel, or other reason for why I have Atypical Trigeminal Neuralgia.

Although my pain is opiate and opoid responsive, I also take Neurontin (generic name Gabapentin). I am not giving medical advice, or telling you to try this drug, but I am wondering if it is among the medications you have tried. It does help to take the edge off of pain for me. Many also report some relief using Lyrica, as well as Methadone. They are two completely different classes of drugs, but they may be options which your physicians may not yet have thought of and you may wish to discuss.

The cocktail of MS Contin, Roxicodone (Oxycodone with no APAP), Neurontin and Diazepam can sometimes leave me pain free for days, and with minimal cognitive impairment. The worst side-effects I have noticed have been intermittent constipation, which is easily relieved by drinking a natural Senna tea before bed, and a bit of sluggishness, at times.

I always advise that if one is unresponsive to a certain regimen of meds, that perhaps they speak with their physician about changing their medications.

I wish I could tell you that there is a magic-bullet, or cure, for ATN. Unfortunately, right now, we have no "cure", so to speak.

My best advice to you would be to keep trying different medications until you find the ones which work best for you, and to never let your pain be dismissed! It took years for me to find the correct medications, for me, which would give me relief.

I reply in hopes that someone can answer your question regarding a doctor who works with ATN patients who are unresponsive to medications.

I sincerely hope your situation improves. I am sorry you are going through such hardship with ATN. This is quite a life-changing disorder, and can leave one feeling quite hopeless when no relief seems to be in sight.

Best wishes for some relief a.s.a.p.,

Stef

3



Stef said:

Hello, Chris.

I wish I could answer your question regarding "pro-bono" work for cases of ATN unresponsive to any meds.

Like you, I've been symptomatic for a long time, and they are unable to find the offending vessel, or other reason for why I have Atypical Trigeminal Neuralgia.

Although my pain is opiate and opoid responsive, I also take Neurontin (generic name Gabapentin). I am not giving medical advice, or telling you to try this drug, but I am wondering if it is among the medications you have tried. It does help to take the edge off of pain for me. Many also report some relief using Lyrica, as well as Methadone. They are two completely different classes of drugs, but they may be options which your physicians may not yet have thought of and you may wish to discuss.

The cocktail of MS Contin, Roxicodone (Oxycodone with no APAP), Neurontin and Diazepam can sometimes leave me pain free for days, and with minimal cognitive impairment. The worst side-effects I have noticed have been intermittent constipation, which is easily relieved by drinking a natural Senna tea before bed, and a bit of sluggishness, at times.

I always advise that if one is unresponsive to a certain regimen of meds, that perhaps they speak with their physician about changing their medications.

I wish I could tell you that there is a magic-bullet, or cure, for ATN. Unfortunately, right now, we have no "cure", so to speak.

My best advice to you would be to keep trying different medications until you find the ones which work best for you, and to never let your pain be dismissed! It took years for me to find the correct medications, for me, which would give me relief.

I reply in hopes that someone can answer your question regarding a doctor who works with ATN patients who are unresponsive to medications.

I sincerely hope your situation improves. I am sorry you are going through such hardship with ATN. This is quite a life-changing disorder, and can leave one feeling quite hopeless when no relief seems to be in sight.

Best wishes for some relief a.s.a.p.,

Stef

4

I have had similar success with meds as steff. I have had success with the fentanyl patch, valium for muscle pain, neurontin for the nerves and oxycodone for breakthrough. I even moved to Florida to improve my circulation. Only the past few weeks I began to notice where the tissue is locked together in an adhesion. This is my jaw, nape, and ear. We know that a shortage of tissue is affecting the neck muscles and jaw. I have had one reconstructive surgery procedure on my lids. No meds really worked until the patch. I dont know where you live, but my pain dr. in ny wanted pain relief 24 hours a day. He used kadian and they were all expensive, but his theory was right.

I was at the Cleveland Clinic and Mayo which I felt was superior. Many of my drs accept nothing, not medicaire or private insurance. I was just reading about stem cell injections in china with amazing results. I was wondering id Red knew anything about this.

Just today, I tried something new. I applied heavy duty moisturizer on my trouble spots, cheeks, jaw, neck muscle. and the muscle tightness disap.peared. This lasted until evening and I reapplied the cream and the muscles relaxed. I could also turn my neck. My nerve pain lessened.

In 8 years, I never thought of doing something this simple. As far as pro bono, I dont believe it exists in America. Drs are opting out of plans left and right. Are you a candidate for a pump or stimulater?

I have a suggestion. Send out your most pertinent records to Drs at major university centers. We took too many wasted trips. You did not mention how the pain began.

It has taken me 8 years to unscramble my mess. I assume that you have been checked thoroughly for all deficiencies and many of us have little showing on tests. It may help to try a 24 hour pain med with oxy, but for me it was vital. Do not assume that cleveland Clinic is the best. Theres Hopkins, Pittsburgh, Washington, and Mayo. Send out those reports to the top men in the field. It wont be costly. I do help you get some answers fast. Wishing you the best.
Stef said:

Hello, Chris.

I wish I could answer your question regarding "pro-bono" work for cases of ATN unresponsive to any meds.

Like you, I've been symptomatic for a long time, and they are unable to find the offending vessel, or other reason for why I have Atypical Trigeminal Neuralgia.

Although my pain is opiate and opoid responsive, I also take Neurontin (generic name Gabapentin). I am not giving medical advice, or telling you to try this drug, but I am wondering if it is among the medications you have tried. It does help to take the edge off of pain for me. Many also report some relief using Lyrica, as well as Methadone. They are two completely different classes of drugs, but they may be options which your physicians may not yet have thought of and you may wish to discuss.

The cocktail of MS Contin, Roxicodone (Oxycodone with no APAP), Neurontin and Diazepam can sometimes leave me pain free for days, and with minimal cognitive impairment. The worst side-effects I have noticed have been intermittent constipation, which is easily relieved by drinking a natural Senna tea before bed, and a bit of sluggishness, at times.

I always advise that if one is unresponsive to a certain regimen of meds, that perhaps they speak with their physician about changing their medications.

I wish I could tell you that there is a magic-bullet, or cure, for ATN. Unfortunately, right now, we have no "cure", so to speak.

My best advice to you would be to keep trying different medications until you find the ones which work best for you, and to never let your pain be dismissed! It took years for me to find the correct medications, for me, which would give me relief.

I reply in hopes that someone can answer your question regarding a doctor who works with ATN patients who are unresponsive to medications.

I sincerely hope your situation improves. I am sorry you are going through such hardship with ATN. This is quite a life-changing disorder, and can leave one feeling quite hopeless when no relief seems to be in sight.

Best wishes for some relief a.s.a.p.,

Stef