I haven't been on in awhile - feeling miserable. I have ATN and the neurologist send me to the neurosurgeon, the neurosurgeon sends me to pain management, and they all just throw their hands up. I am becoming very frustrated. Percocet is the only thing that helps my pain but it makes it very hard for me to work. Its hard to work no matter what. Any suggestions???
I have been on every anti-siezure med out there, so switching meds isn't the issue
hang in there Deanna, learning to live and adjust with TN and ATN is a process. I do not believe there is silver bullet nor does one "mixture of procedure and meds" work for everyone (ie there is no one size fits all).
For me, I have success with simple Neurotin + Tramadol (taken on a 4x/day) cocktail under strict regimen ( ie keep the levels in the blood constant) to dial down the intense searing pain during major episodes from 8 or 9 to a 5 or 6.
Further I have moderate success with the classic TN pain with the Glycerol Injection and later the Gamma knife, but have not been courageous enough to approach any sort of MVD surgery.
Lastly, I do acupuncture every other week, which does little for my TN pain but does wonders for my ATN pain (top head, above temple and ear pain).
There are so many great people here with wealth of knowledge and support. Do hang in there, you can do it
I am hoping for a good Dr who will “own” your problems and try to help you. I wish I could bring you some cheer. I was like you and my great neuro turned my life around, so, there is hope.
Thank you Jackie. I have had 3 MVD's, Chiari Decompression, and years of pain. I am ready to scrap it all. What really bothers me is when you report how the meds effect you or how you feel and the doctors just lump you into how you should feel not how you actually feel
I have taken most of the ant-seizure meds, amyitryiline, nortrytiline, bacolfen, and i have had a gamma knife, and later a MVD, shifted and change, my pain. Not better or worse just changed. I am on Norco right now, it doesnt take away all the pain but it helps. The best thing is that I have a better qualty of life, I dont sit and drool, space out and scare my husband that I will hurt myself or burn the house down. I do not work, I have disability help
It got to the point where I had to tell the Docs no more experimenting with high levels of those drugs, I gained 75 lbs, and pain still broke through. I went to a pain specaialist and after 21 years my life is not perfect, but I am not disappointed, but I still hope. So if you find anything that helps stick with it and adjust your life around it, TN is not going away. Well I should say that for some people surgery works, and others it works for awhile and me not at all. So hang in there keep looking and talking to all of us and The doctors.
Hey Deanna - so off topic here, but I am going to try to go on a long trip (regardless of my pain levels, etc I am determined to do this) have you read any good books lately that you would recommend?
I am so bad at the book thing. It's so hard for me to read so I tend to pick mindless easy books that do not require deep thinking - I am more visual (art teacher). I tend to read history books, nerdy, or get ready to gag, romance novels, they are so easy to read. Interested in history at all??? I do have recommendations in that department, they do take me longer to read but since it is straight forward facts I don't have to figure out plots.
I got relief from the surgeries initially, but pain has come back on surgical and non-surgical sides, so now I am classified as ATN. It is so hard to teach some days, like today I had to leave early because for whatever reason I was having a funky reaction to my meds. I also have gained a lot of weight, which my neuro likes to tell me is NOT a result of medicine or condition. I feel as if I am damned if I do (take the meds) or damned if I don't (stop the meds). I am tired, my family doesn't quite get it, and I am kind of sick of talking about it when people ask me what is wrong with me - sometimes I am no better than a drunk sailor.
I think you understand what I am feeling, going through from your response - I appreciate your support
deanna said:
pinkbird said:I have taken most of the ant-seizure meds, amyitryiline, nortrytiline, bacolfen, and i have had a gamma knife, and later a MVD, shifted and change, my pain. Not better or worse just changed. I am on Norco right now, it doesnt take away all the pain but it helps. The best thing is that I have a better qualty of life, I dont sit and drool, space out and scare my husband that I will hurt myself or burn the house down. I do not work, I have disability help
It got to the point where I had to tell the Docs no more experimenting with high levels of those drugs, I gained 75 lbs, and pain still broke through. I went to a pain specaialist and after 21 years my life is not perfect, but I am not disappointed, but I still hope. So if you find anything that helps stick with it and adjust your life around it, TN is not going away. Well I should say that for some people surgery works, and others it works for awhile and me not at all. So hang in there keep looking and talking to all of us and The doctors.
You are you're own best advocate. Go to another neurologist and get another opnion. How is your primary care? Do as much research as you can. Don't take no for an answer. Just because they don't know what to do, doesn't mean there isn't an answer that is right for you. I have actually found more information on this sight in the last two weeks on ATN than in the last year.
Good Luck!!
I know how you feel, any med I take thats says in the adverse reactions that it is a weight gainer. I gain weight. i had two years of trying to convince this Doc of mine, I wasnt willing to try any more antiepileptic drugs, I had 33 years of Dilantin, for seizures which started at 21. Then the rest of them we tried after 1991 when i had the first bolt of lightning from TN. Its really those adverse reactions that will drag you down. Remember to be proactive with all your health concerns, Doctors are so busy, they can easily make a mistake. If you prepare for your viisit with written out questions and problems, oh and always carry an updated med record, memories arent always exact. You can back up what you say. this is really important consider it like applying for a job, carry your medical resume with you to each doctor. As you get older you see many diferent DOCS; MEDS CAN BE CONFUSED OR YOU CAN TAKE ONE THAT DOESN T MIX WITH YOU OR THAT LIST OF MEDS U R TAKING. SO DO THIS FOR YOURSELF. DOCTORS WILL LOVE YOU.
Vistit will be more productive and take up less time.
I started out with TN now after gamma and MVD its more like ATN, I actually felt bad for my neurosuregon he did my MVD, said he took his time packed the nerve checked and rechecked, and was totally upset when my pain didnt go away, thats when i wnt to a pain specaialisrt for NOrco. I have seen an increase in knowledge of TN in the past fifteen years & more dentists are more aware, I usually ask if the dentist is familiar with wiuth TN before i go. After all I am one of many who has lost allot of teeth due to TN pain and usually after an appointment my face does jumping jacks of pain. I had one tooth that was only 2mm from my left trigeminal nerve, that my dentyist said no implant, I would hate to hit your nerve putting it in. I was so happy to hear him say that, because it means kn owledge is spreading and that is always good. So Hang on, maybe something will come up, I have seen changes over the pasyt 21 years and more are coming.
Deanna I hope this helps you and anyone else who reads it.
If they don’t feel it, they can never ever imagine how it feels. When I think back to my “normal” life, I would never have imagined how the future would be 
deanna said:
Thank you Jackie. I have had 3 MVD’s, Chiari Decompression, and years of pain. I am ready to scrap it all. What really bothers me is when you report how the meds effect you or how you feel and the doctors just lump you into how you should feel not how you actually feel