Hola! I have type 1 TN. MVDsurgery lasted 2.5 yrs. 8 yrs w/ TN. I manage w/ tegretol. Has anyone had issues with tegretol like loosing object words?
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I've just started on Tegratol today after my first three falling to my knees screaming episodes. Not had a problem for seven hours now. I'm also on Palexia .... very heavy opiate for spinal problems and Gabapentin and paracetamol every day all day but they obviously had no affect on what happened today which has been building from a week of short hot stabs. I'm now living in fear for the first time in my life so I'm praying these tablets help.
OMG I am hoping the tegretol works as good for you as it has for me! It was my life save. My Dr. Has’nt had a case like mine, and is not forth coming with the other drugs you have mentioned. I tried gabapentin early-on, and it did nothing. I am 61, and have had this for almost 9 yrs. Rhizotomy and MVD later (which lasted for 2 yrs) …won’t be having any more surgeries any time soon. I found the time release tegretol to be very helpful to keep me as symptom free as possible.
I take Tegretol 400 MG twice daily. I have a hard time finding my words while talking to people....end up taking long pauses while I try to figure out the word I want to say. Now, my brain substitutes words. Kinda weird but it is what it is. So far the tegretol works, I was able to wean off of the gabapentin I was also taking. I am having some minor breakthrough pain here and there, but so far manageable.
I am also on 800mgs of tegretol as well, on top of 3300mgs of gabapentin. …I have the exact same thing happen with the loooong pauses trying to come up with the word I need…it happens to me all the time. I am having an MVD may 30…it am trying to be positive but I am very concerned and wonder how long I will really be off work…I hear all kinds of time lines on here.
Had the MVD Jan. 2011at John’s Hophins, Baltimore. Didn’t miss too much time, but felt awkward because I couldn’t hide the bandages. The scar was heck for my husband to keep dry in the shower. MVD lasted 21/2 years.
I have a score of break-throughs daily, but it is nothing like what I had experienced before the MVD and prior to taking time-release tegretol.
Hi there, tegretol did not work for me, after 2 months, skin on my palms started peeling off. I saw my Doctor and he switched me to Gabapentine. Over time this drug stopped providing me relief ( 5 years) and eventually I had the MVD procedure done May 13 of this year. No longer on any meds at all.
After reading all these posts, it is evident each of us has varied results.
Post operatives, Each case shows either great results, or with varied symptomatic side effects. Most often I see pain reduction not always permanent, and some lingering issues that take lots of time to settle. I although pain free X 3 weeks, I do have right side face numbness and double vision. Am hoping these side issues disappear soon. Still can’t drive… BB
I send my best wishes for all of us that are recovering.BB
Sandy said:
OMG I am hoping the tegretol works as good for you as it has for me! It was my life save. My Dr. Has'nt had a case like mine, and is not forth coming with the other drugs you have mentioned. I tried gabapentin early-on, and it did nothing. I am 61, and have had this for almost 9 yrs. Rhizotomy and MVD later (which lasted for 2 yrs) ...won't be having any more surgeries any time soon. I found the time release tegretol to be very helpful to keep me as symptom free as possible.
How long did it take Tegretol to work? I stated 200mg a day last Thursday - was told to up it to 400mg day on Sunday, pain still awful had worst ever episode last night.
Thanks
mare said:
Sandy said:OMG I am hoping the tegretol works as good for you as it has for me! It was my life save. My Dr. Has'nt had a case like mine, and is not forth coming with the other drugs you have mentioned. I tried gabapentin early-on, and it did nothing. I am 61, and have had this for almost 9 yrs. Rhizotomy and MVD later (which lasted for 2 yrs) ...won't be having any more surgeries any time soon. I found the time release tegretol to be very helpful to keep me as symptom free as possible.
I find myself not remembering words and actions I need to do right before Doing them in a way. But right now it’s mainly the nausea is TERRIBLE. I’m only on first pill of the day right now and here I am nauseated and clammy as anything. Not sure if I’m supposed to call dr about this or not but it kinda just seems to be getting worse. Are you having any other symptoms. Has it diminished pain any?
I do not have those feelings just wondering when it kicks in a helps pain
How long did it take Tegretol to work? I stated 200mg a day last Thursday - was told to up it to 400mg day on Sunday, pain still awful had worst ever episode last night.
Thanks
I am on 500mg started Thursday myself. It seams that about 5 days into the newest dosage my pains come back but not intense. Like I can totally handle this not how it was. I’m just afraid it’ll get worse if the dose isn’t made higher but then again I don’t want to go higher!
I have not been pain free, last 2 days awful. Last night as I mentioned worst ever. Not sure if coming rain has factor. Pharmasist says it takes awhile to kick in,
I called Doc to tell him pain awful aave not heard back. If dosage goes up from 400mg I will take that over pain,
Thanks
Has anyone gone to ER with pain
I never went to er since I thought it was dental I just literally forced my way into an appointment lol. My neuro started me on 200 a day for 3 days. Then on to 400 a day for less than a week then he told me to add a half in the middle of day. That was Thursday and the pains are returning. Maybe he’s had you on 400 too long? I don’t want to do up but the pain is returning so I know I need to increase. My neuro should be calling me shortly. I’ll let you know next dose of anything and if it settles pain again. But again I’ll say it’s not as severe as it was and how you were last night. Unfortunately I don’t think there’s much the er can do since its nerve pain and these nerve medications need to be slowly increased and decreased. I will say that before I knew what this was or anyone the oral surgeon put me on antibiotic and percocets. Up to two percocets didn’t even TOUCH the pains just made me drugged. I laid down from them and I couldn’t even get my head off the pillow because it was triggering the pains. My God I was actailly trapped on my pillow. These pains are something awful and I actually have anxiety for its return. I feel for you 100% and hope your darn dr calls you back!!
So neuro upped dose to now 600mg a day and I’m starting it today and praying no bad pains. This really sucks. And I hope you are alright…
Hey you’re actually close to me too.
Dr. Called back left message called back got service so called back got service and his partner called me back I was told up to 600mg today also. Lets hope for best. Took 400mg today said take 200mg more tonight and continue like for week till i see him Friday also waiting for MRI approval.,
Well I really hope it helps!! Keep me posted?