My general physician said to ask the neurologist about tegretol, and said I could go up to 800mg gabapentin 3x per day, and he gave me a narcotic.
The narcotic has aspirin in it and gave me red bumps called Petechiae almost immediately. I took the pill in the evening, when I woke up the next day they were immediately obvious.
I wrote my GP back using their little online msg deal and he said they were likely stress related, and just wait till next Tues when I see a new neurologist for a second opinion and see what they say. I phoned my neurologist to tell them about the bumps (before I knew what they were) and they said to ask my GP. GP says to ask the neuro. lol
So I was curious if maybe tegretol could replace the gabapentin and hydrocodone. Anyone ever make the switch? Did tegretol have more side effects?
Hi Shindig, gotta love when they pass the buck hey?
I have tolerated Tegretol quite well in terms of side effects. I should also say Im on the slow release kind Tegretol XR or CR. they seem to work well. Initially when you start you can experience drowsiness and a heavy sort of feeling for a few days up to 10 days. As well as any other minor side effects . You really need to let it build up in your system if you don’t have a severe reaction to it.
I felt almost immediate pain relief BUT had to work up to 800mg to remain pain free consistently.
That worked for 2 yrs in my case until I relapsed this year twice. The first time we increased to 1600mg and the second time we added Neurontin ( just recently) I am currently at 600mg for that deciding whether or not to increase again.
Also when you are on Tegretol it is very important that your doctor do blood work, I get mine done every 3 mths aproximately as the drug can wreak havoc with your white blood cell count among other things.
Remember everyone reacts differently.
Good luck to you!!
I broke out when taking tegretol in red bumps also. Neuro said that I was allergic to it and took me off. I am now on Neurontin 600 mg 3 times a day and methadone for pain. The hydrocodone does not seem to help the pain. Good luck.
If you are allergic to tegretol, u gotta get off of it.
I have taken all 3 of those medications and haven't found 100% relief on any combination (unfortunately). I have found gabapentin to be much more tolerable (side effect wise) but the pain level was much lower on tegretol. It's kind of a double-edged sword I guess. I have taken hydrocodone off and on throughout the duration of having TN and it seems to take the edge off of my pain to some degree. Of course it seems that all of our medication options can affect individuals very differently. Whatever you decide, I wish you the best of luck!
Be careful on the prednisone. I was put on that when I was first diagnosed this summer with TN, Shortly thereafter I got type II pneumonia and then my blood sugar spiked to over 1000. I have been sick for a month!
shindig said:
Ah, I probably can't do it then if it messes with white blood cells. I'm on high dose prednisone to knock down my immune system which already affects my cell counts.
The gabapentin does the same thing as I adjust to a dose, makes you kinda tired, but after a few days I'm back to normal.
The tegretol has controlled my pain. It is worth a try shindig. Just make sure you get your blood work done. My liver enzymes are high but I would prefer that over the pain. If it gets dangerous we try something else. I am going to put $7000 in my wallet for the laser institute in Myrtle Beach. Too young for this!
Tegratol is the most effective but also the least tolerated drug for TN (1 and 2) More one less 2
Nurontin is less effective but is more tolerated again for TN 1 and 2 More 1 less 2
In My expirence the docs used to try you on tegratol and if you had a positive response IE felt better than that was an indicator you had TN. If you had no response then No TN.
(I was on tegratol for 3 days The TN almost stopped but I was loopy )
Everyone is different and it takes a while to find a balance of drugs that work for you.
Re the heavy drugs The codones Oxicontins oxcodone endone etc etc (all of the same Type all morphine base and opiate etc) some slow release some not.
These types of drugs work really well if you break a leg or have a bad back (Like me) but do very little for nuropathic pain, Aside from the obvious you are less likely to care about it so much drugged to the eyeballs
Now the lesser drugs Codine and nurofen / ibrupofen are more effective for nuropathic pain but are much less of a heavy drug. lower dosage etc.
I was told this by my nurosurgeon and always have found it to be true.
I understand from another post that Ibruprofen is out for you? (Bugga)
Note the above is strictly my understanding
I have been asking questions for 14 years on this stuff,
Baclofen has helped the spasms in my face tremendously. I also take trileptal, amytripyline and cymbalta…It has been a great combo for me!! Minimal side effects!! Good Luck at your appointments…fight to get on a med regime that will help you, don’t settle for " well let’s wait and see"!!
I was reading what you said about the knot Shindig and I do get pain on my right side at times in that same spot and I can only imagine it magnified and I got a sick feelin in my stomach. I wonder if they should try you on oxycodone or even methadone- this sounds pretty bad... I do hope it gets better. I take trileptal and topamax and oxy for breakthru pain , but I know you said your blood counts are high so that leaves out trileptal for you, I think. Maybe you could ask your Doctor??? But geez. I hope they can give you something stronger.. Agree with Lisa, there are lots of combo's out there!!!!
That is encouraging to hear. I am ready to dump my neurologist. No wonder he can see me a month out. Too busy taking Fridays off. I am feeling tingling on the right side of my face and want to be prepared if this monster attacks again. November 1st doesn't cut it if I am plagued with pain.
While the other doc was staring at his computer screen he was probably on facebook or researching his next vacation. LOL. We gotta keep our sense of humor in all of this. Hang in there!
Side effects can vary from person to person. I take Tegretol and I don't have many side effects. I mostly have more forgetfulness and sometimes have trouble sleeping, but other than that, I don't have any problems with the Tegretol. It works well for me, but some people don't like it. You can only try it and see how it does for YOU.
Hi shindig, I’m taking Tegretol. I have been on & off it for the last 2 years. I have not been on Neurotin. But I have been on OxyContin which is an an opioid? I think, can’t spell very well sorry. Any way, it’s a narcotic & highly addictive. It’s called ‘Hill Billy Heroin!’ I became addicted to this drug & it’s almost cost me my life. I was given this drug in hostpital after my first MVD. I had no idea what it was, but I could not get off it. Any way, when I first started taking Tegretol, I was like a zombie! I went hrough a red light, couldnt speak properly etc. I was having it before my surgery. With out it, I would have taken my life, because it did control my pain. But now, I seem to tolerate Tegretol. I think your body just gets used to it after a while. I still get face pain, but I know I need to stay on it as I don’t want to have any more surgery. Some one suggested that I try Neurontin wit my Tegretol to contro my pain as the Tegretol is not quite doing it for me. But my neurologist or Neuro Suergeon have never mentioned this drug to me. In regards to prednisone, I know you can’t stay on it for long as it suppresses your immune system & causes a whole lot of other health issues. I think I may, be put on Gabapentin or Tramadol next visit to the Neuro. But I’m not to interested in seeing any doctors right now. Atleast here, people understand. In regards to the red bumps. It may be stress, of course who hasn’t got stress with TN! But hey, I also came up in some, on my chest. You know, some times the doctors don’t have an explanation. But that’s why we are here for each other. I appreciate all that I have learned from the other people on this site. Regards Sally
Thanks, the NS did mention Trileptal to me last visit. But, I was pretty depressed than & more or less told him to go to hell! You see, I was taking the OxyContin & was just not me! Regards Sally.
I take 900 mg gabapentin 3xday. Spoke with VA pharmacist yesterday and she said I might be able to take an even higher dose depending on my Kidney function. Or said I might even have to try a combo of drugs. She agreed with my fears that tegretol had way too many side effects.