If you've been following this thread you know that I'm new on the forum and new to TN. Here's the latest in my journey. First, as bad as my pain is (was) in reading these posts I'm well aware that there are cases infinitely worse than mine. I feel for those folks and pray that they may find some relief.
Here's my update: After only one full day on tegretol (600 mg per day) my pain totally disappeared; I can hardly believe it. Last night, I had my first pain free meal since my TN started six weeks ago. So far, the only side effect I'm aware of is strong drowsiness and mild dizziness. I'm not sure if I should be driving. Here's my question: Can I expect these two side effects to go away once my body gets used to the medication? If not, I have to rethink whether the pain is worse or the side effects. I've found an MD who has done Botox injections for TN and I'm going to call him Monday. Has anyone had any experience with Botox? I know I'm asking a lot of questions here and I apologize for that, but I'm in a real quandary as to where to turn. any input would be most welcome.
Bill, my nerve pain also reacted very quickly to Tegretol,( like you all I needed was 600mgs a day,) but not as quickly as yours though! I didnt have any of those side effects, so I cant help you there.
Hi Bill. I’m sorry to hear you are in this journey as well. However, happy to hear you finally had some pain relief. I don’t have advice about Botox but I can share with you about Tegretol. For me the side effects were horrible. My doctor told me some people just can’t handle the side effects because it is a horrible medicine. You honestly shouldn’t be driving until your body gets use to it. For me it made me feel extremely drowsy, dizzy and gave me unrelenting headaches. I couldn’t do anything. So give it a few weeks for your body to adjust. It is dangerous not only to yourself but others to be on the road.
Hi Bill,
I am rather surprised you were started on such a big dose, 200mg is more normal. I am not surprised you feel drowsy and dizzy even if only mildly. I am not surprised however that Tegretol is giving you relief after one day. Although it can never be said to help everyone straight away, when I was prescribed it my pain also subsided on day one. I rather smugly thought ( oh the times I have shaken my head at my optimism) I had TN cracked and did not know what all the concern was about. My foolishness! Tegretol works very well for me, but it works so well that in the past I have become complacent and not paid due care and attention to regular dosages etc. That is the key for me, taking my meds at well spaced and never forgotten doses. All the best Bill.
Bill - is your pain was constant (did you have 24/7 pain ? ) ? or attcks like classic TN ?
glad to hear Tegretol works (it's good- since there are people get NO pain-free time even with meds ) !
about the side effects :
1. as you were told - maybe the dosage you started is too high
2. Trileptal was said here to be like Tegreto l -but with much less side effects. BUT - since you have'nt really given your body time to get used to the Tegeratol - first give it a full chance (since it REALLY helps you) and if not- you can always know there are other drug options.
when you say you took twice - you mean - you started one session on each med , stopped for a while and started again ? can you tell why you stopped ? thanks. and sorry for all the questions.
Nir I started on Tegretol. After a while I became complacent and played with the dosage or did not take it. I suffered a long time as I ws unaware there were other medications to try. I was than given Gabapentin and this worked for 18 months before becoming ineffective. I tried many other meds with no success so was put back on Tegretol which became fully effective after about 8 weeks. After 15 months my bloodwork was not too good. I became one of the few who suffered liver problems with Teg. At my request and at Red’s suggestion I returned to Gabapentin and no longer have liver issues and my pain is well controlled. I would hate anyone to be alarmed at the issues I had with my liver, not everyone has the same side effect. I have other health issues which have not helped.
Bill, Jackie reminded me that I did not start at 600, but 200. But I rose to 600 quite quickly and that then did the trick. 600mgs kept it at bay and I never rose above that.
Bill I started at 400 mg extended release for 2 weeks then went to the 800 (400 X2) This did bring my pain down, but not completely. Burn through is common if I do any type of stressfull work, bending over or heavy carring. The first 2 months I was in a stupor most of the time. Now not so much but still have problems with it. I do not drive anymore at all. Burn through is my biggest problem but even when that happens the Percocet's are able to bring it back down to a managable level. As you most likely know by now, each of us are different in the level and duration of the pain, same is true for how we handle the drugs. To me, Tegretol has been a life saver, the side effects, while bad for me, is preferred over the pain. Again each person has to make their own choices along with their doctor. As to work or not, again a choice it took me 15 months to get SSA disability, but there was no way I would ever be able to work again. Heck I can not even mow my own lawn now. Have to pay some one to do it.
by the way Tegretol and liver problems are quite common. that's why i guess it is one of the meds that requires (at least here, in Isarel) to do a blood test every period of time to check liver function.
by the way - i don't want to desrespect doctors - but i know now - they're a lot they don't know and many things they reduce and not say. as long as it's not they who suffer - they don't much care of side effects etc.
by the way - there's always Trileptal which is said here to be similiar to Tegretol - with less side effects.
but - you are good with the Gabap. and that great.