MEDICATIONS & SIDE EFFECTS

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Comment by Sheila W. on May 9, 2012 at 10:24pm

Tim, I saw on your page that Jackie suggested a pain Dr. I agree!!  What your neurologist should have said is that HE is at the end of his knowledge. New research shows that there are other causes of TN such as pinched nerves in C1,C2,C3 vertebrae of the neck.  That might be why your MVD didn't work, and why you now have atypical symptoms. He is doing the right thing to offer a combination of meds. Maybe the dosages needtweeked. I think 2 anti-epileptic drugs would make you too groggy to work. Maybe if he changes you to Lamictal from tegretol. Also, make sure you're getting lots of B complex (heals nerve endings) and vitamin D3, at least 1000 IU a day. It heals the whole cntral nervous system. I sure understand your statement on your page that you're almost too sick to work. Many of us have been through less than you and are incapacitated by the pain/meds. You may want to consider applyiing for disability.

Comment by Tim Smith on May 9, 2012 at 7:53pm

Neurologist wants to add lamictal to tegretol (1600mg), valium and norco after mvd and rhiziotomy. Tells me I am getting to end of road.......I believe I need a new Neurologist.

 

Comment by Min on April 23, 2012 at 8:47am

Yes, all Sheila said good advice.  I started on 3oomg.twice daily.That worked but back then it was not that bad. You may wanna call your doc if you can't take the pain.  He may give you something else until meds start working. Best wishes!! Min

Comment by Sheila W. on April 22, 2012 at 8:36pm

Yvette, I got your question by email, but I can't see it anywhere here, so for other readers sakes, I'll copy it here.

Yvette said: "Started low does of gabapentin on 4/20/12, i beleive i start increasing mgs this week, so far i feel nothing? how long ? "

Every person is different. It takes weeks (2 to 6) for enough to build up in your system to work fully, but it could start to work in as few as 7 days, and it depends on how much you take. I had to stop within a week due to liver problems, so I'm sure others will reply and tell you more about your meds. Don't get discouraged with it if it takes a while. This medicine will help some, and you can also ask your doctor about combining with other . You can also ask your Dr. about pain meds if that's what you need until the gabapentin kicks in. Maybe you can even use the E.R. and if you tell them you have started gbapentin and you need help until it starts working. Other things you can ask your Dr. about is combining are muscle relaxants, or an anxiety med. Not for anxiety, but because it helps calm down irritated nerve endings.

Best wishes, Sheila

Comment by DonnaTn15 on April 4, 2012 at 8:00pm

Thanks Red, I've been keeping a journal of all these diffent medicines that people are taking so I can present them to the doctor to see which one she recommends.  She's not a neurologist though so I'm not so sure she would refer the right one.  She wasn't even very familiar with Tn as well as alot of the other physicians I've seen in the past, that really surprised me.  I guess its better to see a neurologist maybe since they seem more familiar with it. 

Comment by Richard A. "Red" Lawhern on April 4, 2012 at 7:36pm

Likewise, one thing to try before switching from Tegretol to something else would be a "booster" low dose of Baclofen, a muscle relaxant like Flexeril, or a low dose of a mild tranquilizer like Valium.  If that poly-therapy is not effective, then a lower dose of Tegretol might be combined with Trileptal or Neurontin, Lyrica, or one of the tricyclic antidepressant meds like Amitriptyline, which have a cross-action on pain as well as depression.

All of these options should be familiar to your neurologist, and should be discussed with him or her.

Regards, Red

Comment by typqueen on April 4, 2012 at 7:34pm

I've always heard not to exceed 1200 mg per day of tegretol.  Maybe there is something else that can add to help with the breakthrough pain?

Comment by Richard A. "Red" Lawhern on April 4, 2012 at 7:33pm

Max recommended dose on Tegretol is quoted on rxlist.com as follows:

"Dosage generally should not exceed 1000 mg daily in children 12-15 years of age, and 1200 mg daily in patients above 15 years of age. Doses up to 1600 mg daily have been used in adults in rare instances."

Regards, Red

Comment by DonnaTn15 on April 4, 2012 at 7:31pm

Does anyone know what the maximum dosage of Tegretol  might be?  I've been on 1200 mg. a day and now have breakthrough pain just about all the time now, and its worse then it used to be.  Its very depressing because it used to take the edge off and now it doesn't.  I haven't spoken to my doctor yet.  I guess maybe its time to try another anti-convulsant, does anyone have any suggestions to the next best thing to Tegretol? 

Comment by Porcelina on March 23, 2012 at 4:39pm

Thanks Red ... I couldn't stand it any longer and I've gone back down to 3x a day rather than 4. I had  gone through nausea to the point of not being able to sit up, feeling like I was drunk the next day to itching (no rash) ...  I could put up with those as they were improving and I thought hooray I've found a good dose where I am pretty pain free with managable side effects. But then there was shooting pains in my arms, a weak grip, peripheral neuralgia in my hands. Enough for nothing to touch those pains, it was like TN in my arms! I am damn scared that the pain will come back going down from 4x a day to 3x. But I guess if it does perhaps I can try gabapentin instead. My doctor likes the old school drugs better as they have been researched more despite the newer ones having less side effects ... no choice if the pain comes back!

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