I'm on the uphill side of the Tegretol pyramid. I've gone from 400mg to 600 to 800 and am about to start the big 1K.
I have noticed that I'm not feeling terribly chipper, my stomach is a mess, I'm dying for sweets, I could sleep for days, I'm still having pain, and I'm dizzy out of nowhere.
I feel like I'm on a game show - GPN or Tegretol? - where you have to match the symptom with the cause.
Have you taken Tegretol? Do you take it now? How are you doing with it? Do you take something else? Tell me more....
WotV...I've joined this site because my mother suffers with GPN. She had a difficult time with Tegretol and when she reached the higher dosage of it she had an allergic reaction with facial swelling, etc.
From the very beginning of taking it she had extreme stomach upset and she lost about 15 pounds in 2 to 3 weeks. She was very dizzy too and became very depressed. Hard to know if Tegretol caused that or just the pain and sickness. Her GPN pain was not as bad as without the medication, but it was still present.
I was not on tegrital for more then three weeks. Too woozy. Couldn’t function. But I have heard many people who had success with it. For me trileptal worked wonders.
I was on it to a max of 2400 mg... along with Neurontin. Suffered sever allergic reactions to both along with almost all the listed side-effects (except for those involving lady parts). Finally had surgery and now using medical cannabis. Way better now than with Tegretol/Neurontin.
I too was on the max for Tegretol along with Dilantin. And it does reach a point where you just can't take any more medications...it becomes toxic to your system. And yes, Tegretol does all the things you have mentioned.
So, I finally opted to have the MVD surgery and while it was successful I stroked out and in the commotion caused by that I now have a damaged nerve in my throat that causes me to cough uncontrollably for as long as 15 to 30 minutes at a time. I now get Botox injected into my vocal chords which does help...but not all the way. And while you have a Minnie Mouse voice, I have hardly any voice at all.
My point is I guess we just can't know what our bodies are going to do or how long it will take them to recover. Nerves are a very tricky thing I have found out. And I have nothing but the deepest sympathy for everyone who suffers from nerve pain. I never knew it was like this. I just never knew.
I've taken Tegretol for years and I credit it with saving my life. When the GPN is bad I'm at 800mg. My doctor tried me on Lyrica about a month ago and I couldn't tolerate it. I had the shakes, headaches, really bad stomach problems, and I was very disoriented...and it didn't work. It does work for some folks but not for me. I'm back to Tegretol. It may be something that you could investigate.
I am not sure where I stand in this thread because I have not had a solid diagnosis. One person says yes the other no. Nonetheless I cannot eat without debilitating pain and have near constant pain with spikes of more intense pain. I have taken several drugs and nothing has helped. I have learned to live with the pain rather than suffer the side effects from the meds. I use good old fashion weed to control the pain cycle. I use lozenges and will be buying a vaporizer. It gets me down off the pain mountain and I have no side effects. I do not get high. I take just enough to remove myself from the ledge. To each their own but I would rather deal with the devil I know. Synthetic vs natural also makes me feel like I am not doing more damage. Plant, sugar, water. Easy.
Through the last 6 yrs. I have taken Neurontin, Gabapentin and Trileptal. At one time I was on all three. But I was such a zombie that now I take 1350 mg a day of Trileptal only. I thought the Trileptal wasn't working, so I told my doctor I wanted to eliminate it all together since it wasn't working and I was in pain anyway. However, a few days after I started to decrease my dose, all the symptoms got worse, so that's when I actually increased dose to 1350 mg a day. Plus valium at night. Every doctor seems to have their special medication for this. I know there are others besides the ones I've tried. However, I found that medical cannabis works the best, for pain and sleeping. I am considering MVD, but am not quite ready mentally, spiritually and financially. So, I continue to listen to everything everyone shares here. Finding this website has been the best thing to happen to me so far.
I do not take meds and I am seeing a Neuromuscular Therapist who actually manipulates all the muscles in my face, neck and chest area and have seen relief in only 2 sessions! I highly suggest going this route as the medications are making you all feel worse,