Red I posted In the bilateral group, I am not sure if you need more information for your study. Please feel free to message me and I can provide more info if you need it
Thanks for all you do
Wendy
Years ago it started with sudden brief stabbing pains + electric shocks on one side. Now, after my 2nd gamma treatment, I have constant burning/tingling like much like hitting your funny bone very bad in the elbow except its in my face + sometimes waves of sudden electric shock , but not as severe as without the gamma treatments. However, that being said, I have had to go back on daily doses of 900 mg Trileptal (previously was on 900mg Tegretol) and 150mg Lyrica. (Some of what I feel "may" be from nerve damage caused by Gamma....which after all is the intent - to lose the pain). Although the 2 treatments of Gamma and the above meds prescribed afterwards sounds like a lot ( and it is), they don't pale in relation to what life would be like without it all. That is, assuming I would still be here. All in all, I now live very well. I just live with a grogginess getting up in the morning, but I get over that in an hour or so. I still feel it in my face all day long, but at a very low mainable level. In other words, the BAD BAD BAD pain is gone. You just learn to get along with the minor stuff. And, with the grace of God himself you can, and you do.
Hi red I posted in the bi lateral group. Let me know if you need more info. It upsets me when specialist don’t havve proper info. I went to a neuro for a year, a so called specialist whose remedy was simply to shove more pills down my throat, before he finally admitted to me that he had limited knowledge of TN and simular disorders and that perhaps a neuro at the unniversity hosp might be more appropriate. It would have been nice if he would have told me sooner.
Ouchie, that is for darn sure. These guys with little experience have NO idea. If they did they would act sooner.
I went to a university hospital , supposedly the best in the world and the neurosurgeon discounted that I had it on both sides and also doesnt believe that my pain in the ear is related, when all the evidence and testimony from others says it is..thats what is so frustrating on this, even the experts disagree
Wendy
ouchie-booboo said:
Hi red I posted in the bi lateral group. Let me know if you need more info. It upsets me when specialist don't havve proper info. I went to a neuro for a year, a so called specialist whose remedy was simply to shove more pills down my throat, before he finally admitted to me that he had limited knowledge of TN and simular disorders and that perhaps a neuro at the unniversity hosp might be more appropriate. It would have been nice if he would have told me sooner.
Unfortunately, TN is not a really well researched disorder for a 100% chance of fix like, say, appendisitis or abcessed tooth, etc. Its my feeling that the pain can sometimes come from something other than a vessel compressing the nerve. For example, recently I had an MRI done for possible MVD -- and this is after 2 gamma treatments. The MRI revealed my T nerve had shrunk away from the vessel and was not touching. MVD would thererfore not help and would not be done. The same MRI revealed there WAS compression on the other side of brain. But I have no problems on that side. Asked to exlain that the suregeon had none. Sooooo, I have T nerve compression and no pain. Go figure. Another thing.......I have always, ALWAYS been able to sleep with no problem. NONE. Nada! If a nerve was being compressed by a vessel that caused the problem, why would it just quit at night?? Go figure.
Jimmy I have been trying to figure out the sleep thing too, I sleep 10-12 hours a night now with the meds , 50mg of Lyrica 1-2 times a day and thats it. I rarely have pain at night, I too wonder why it goes away when I lay down. My neuro was less than helpful explaining what he saw on the MRI, I am going to my family doctor to see if she can translate what the heck he saw and maybe explain the sleep thing as well
Wendy
Jimmy Works said:
Unfortunately, TN is not a really well researched disorder for a 100% chance of fix like, say, appendisitis or abcessed tooth, etc. Its my feeling that the pain can sometimes come from something other than a vessel compressing the nerve. For example, recently I had an MRI done for possible MVD -- and this is after 2 gamma treatments. The MRI revealed my T nerve had shrunk away from the vessel and was not touching. MVD would thererfore not help and would not be done. The same MRI revealed there WAS compression on the other side of brain. But I have no problems on that side. Asked to exlain that the suregeon had none. Sooooo, I have T nerve compression and no pain. Go figure. Another thing.......I have always, ALWAYS been able to sleep with no problem. NONE. Nada! If a nerve was being compressed by a vessel that caused the problem, why would it just quit at night?? Go figure.
i started out with tn on right side of face after first year developed bilateral that has gon on with pain on both sides sometimes at the sametime sometimes sepereate for about 5 yrs then about a year ago i developed occipital as well i am being told this is next to impossible and no one seems to know what to do i have gone to several nuro's at this point but they just kinda look at me like im crazy when i explain it to them i recieve mostly short shocks or jabs on a dily basis then around once or twice a week i get attacks of severe stright pain that last for about 12 hrs this past year however my occipital went insane and i was in constant pain for 6 months straight with only 4 breaks during those six months that lasted less then 24hrs each time i had them burn the nerves by the base of the skull (pain doc) nuro wouldnt try anything other then meds that wouldnt work and am doing much better now i know that its only a temp fix but was beginning to loose my my mind i have had ever test in book including MS tests and do not have it however two years ago i ended up in wheel chair quit breathing and my left back muscle stopped working they think i may have had a stroke but no evedence other then muscles being weird but when i went to two nuros as directed ny ortho who said this was nurological they concentrated on tn and ignored everything else as far as i know tn can not cause problems elsewhere other then face and head so not sure why they wont look into anything else for me. but i am one frustrated patient having every form of tn cant find anyone else like this and also having muscle issues with unkown cause as well so if there is a medical doc out there thathas heard of this please feel free to send them my way lol hope this helps with your research if you need any more info please dont hesitate to ask
In retrospect, lifetime intolerance of any exposure of ear/jaw joint area to cold breeze may have been indication of TN susceptibility. Mother has similar vulnerability, developed type II TN right side one time in her twenties.
Mine is left worse than right (I’m left side dominant in most things, including injuries). The left side gets exacerbated much more easily and once it passes a certain level, the right side will join in. I have observed it getting triggered by mechanical irritation, jaw joint area inflammation that will then spread along the nerve paths. That process also causes damage to my other cranial nerves. 24 hours after inflammation has hit, dysphagia gets worse, motion tracking is more impaired, etc.
I don’t know whether there is a clear beginning point for my troubles with the trigeminal nerve, it seems it was made worse when other injuries and systemic disease processes took hold. A head and cervical spine injury with subsequent degenerative changes have left me with upper and lower cervica hypermobility and instability, a source of much pain and constriction. One effect is occipital neuralgia, something I had mistaken for migraine in the past.
It is hard to say what is secondary, and to what, at this point, neurological damage just keeps expanding faster than I can remyelinate/regrow axons. The spinal degeneration is one element, but there is another, yet to be identified source of neuromuscular decline; not all muscle wasting, deficits can be traced to compressed nerve roots or be ascribed to mixed peripheral neuropathy (from whatever cause) - or even be explained with a facile toss into the MS bucket.
Back to the TN, I had expected my jaw joint damage (joint injury left worse than right after a dislocation and multiple impact trauma) to be the cause, it is apparently more of a trigger, contributing factor. When it spikes, I can feel the throbbing, an unusual experience for me. Most of the time it feels like a titanium icepick driven through the jaw joint/ear area into the base of the skull.
More distributed pain lines up with the nerve exit points and branching pattern exactly. Numbness is not as common for me, depends on neck situation. When it occurs, it starts at the bottom and expands up gradually, jaw first, then mid face, sometimes to forehead. Usually notice when I hit my front teeth with the cup/glass without approach warning. That stuff is strictly bilateral.
The sharp pain is by far the most intense pain of all nerve, joint pains, eclipses coherent thought.
Hope this helps others who are dealing with more than one side, one neuralgia, etc.
My guess is merely, things come together and the sum total makes for the mess and continued exacerbation - another way of saying, ‘complicated’. An immediate “go away, you’re giving me a headache” type trigger for most doctors, it would seem.