neuralgia and trileptal?

[mimzy]

so my neurologist finally started paying attention to what i''ve been saying during my appointment today and he determined that the headaches (if you can call them that?) is likely a form of neuralgia. he prescribed me an anti-convulsant used to treat epilepsy called trileptal...it''s supposed to reduce the inflammation of the nerves or something. i''ve been put on an anti-convulsant before (neurontin; to help treat BPD) but only stayed on it for a few days as i had horrible side effects (non stop throwing up).

anyways...does anyone have any experience with it? i''m really nervous from what i''ve read - it looks like it messes with your frontal and temporal lobe, and can basically cause neurological disease-like symptoms (gait change, rapid/blurred speech, confusion, tremor and other involuntary movements, on top of normal medication side effects (nausea, fatigue, dizziness (which i already have issues with), dry mouth and acne (ACNE??!! maaaann...mine i already so bad

)


anyways...does anyone have any experience with it?

 

[Pandora II]

I don''t have experience of that particular anti-convulsant, but I have been on several others.

They are not all the same - the one I take now (Lamictal) gives me no side-effects at all and is my wonder drug, but I took Tegretol for a year and had a terrible time on it, I also took Neurontin and had no problems with it - although it didn''t work either so not much good in that sense. So reacting badly to one doesn''t mean you will to another.

They all come with a long listof possible side-effects - personally I don''t normally read the list unless I get some weird side-effect and then I check to see if it''s on there. It''s too easy to freak yourself out otherwise.

 

[mimzy]

Date: 11/7/2008 10:27:31 AM
Author: Pandora II
I don''t have experience of that particular anti-convulsant, but I have been on several others.


They are not all the same - the one I take now (Lamictal) gives me no side-effects at all and is my wonder drug, but I took Tegretol for a year and had a terrible time on it, I also took Neurontin and had no problems with it - although it didn''t work either so not much good in that sense. So reacting badly to one doesn''t mean you will to another.


They all come with a long listof possible side-effects - personally I don''t normally read the list unless I get some weird side-effect and then I check to see if it''s on there. It''s too easy to freak yourself out otherwise.

thanks so much for responding pandora...

trileptal is basically just tegretol with an extra oxygen stuck onto it, but from what i read it makes a big difference in the prevalence of side effects. and that''s good to know that my reaction won''t be exactly the same....and you''re right, i probably shouldn''t have read the list! but my doctor made it a point of telling me to call right away if i experienced any of them (as he listed them), which he hasn''t done before, so i was just sort of alarmed. i talked to my cousin who''s a pharmacist and she said that the more severe side effects are much less common than the less severe ones (double vision, dizziness, nausea, etc), so that made me feel a little better too. i''m glad that you found one that works so well for you!

 

[MichelleCarmen]

I tried Trileptal for mood and a rather inexperienced dr. put me on a whopping 1000-1200 mg per day. It was horrible and my coordination was off. I'd hit walls when walking around corners! I would stick my hand out to reach a drinking glass and MISS! I can laugh about it now, but at the time, it was unbareable! I didn't stay on it for more than six weeks. My advice is to try it at a very small dosage and you should be okay.

Has your dr. suggested Topamax? That is prescribed for headaches. Someone I know has been taking it and has about half the amount of migraines she use to have. . .it has a horrible reputation for causing cognitive issues, such as forgetting words while speaking, etc., so you'd want to take as little as possible.

(ETA - and like Pandora, I'm also on Lamictal and have had the best luck with it. I take 200 mg per day.)

 

[mimzy]

Date: 11/7/2008 2:03:04 PM
Author: MC
I tried Trileptal for mood and a rather inexperienced dr. put me on a whopping 1000-1200 mg per day. It was horrible and my coordination was off. I'd hit walls when walking around corners! I would stick my hand out to reach a drinking glass and MISS! I can laugh about it now, but at the time, it was unbareable! I didn't stay on it for more than six weeks. My advice is to try it at a very small dosage and you should be okay.


Has your dr. suggested Topamax? That is prescribed for headaches. Someone I know has been taking it and has about half the amount of migraines she use to have. . .it has a horrible reputation for causing cognitive issues, such as forgetting words while speaking, etc., so you'd want to take as little as possible.


(ETA - and like Pandora, I'm also on Lamictal and have had the best luck with it. I take 200 mg per day.)

eek! that's quite the dose! my doctor is definitely easing me into it....150mg a day, then after a week 300mg. i bet it was pretty scary having those side effects....

we had talked about topamax, but my headaches aren't migraines by any stretch of the imagination. i'm already on a once daily (nortryptiline) to take care of one type of headache that is always there (24/7 for over two and a half years), but these are extremely sharp piercing, burning pains that only last a few seconds but occur very frequently and have no other symptoms. i think (hope!) that a v. small dose will be sufficient based on what i've read so far....

glad you had good luck with the Lamictal too!

 

[canuk-gal]

HI:

My sister was perscribed this for scalp neuralgia post chemotherapy (breast cancer) and it worked for only a very short time--she stopped b/c it was ineffective. And so far nothing else they have tried has worked for her problem. Good luck.

cheers--Sharon

 

[lauralu]

are you talking about Occipital Neuralgia?

http://www.ninds.nih.gov/disorders/occipitalneuralgia/occipitalneuralgia.htm

If so, my daughter had the nerve block shot for this and it worked miracles for her

 

[mimzy]

Date: 11/7/2008 6:12:17 PM
Author: canuk-gal
HI:


My sister was perscribed this for scalp neuralgia post chemotherapy (breast cancer) and it worked for only a very short time--she stopped b/c it was ineffective. And so far nothing else they have tried has worked for her problem. Good luck.


cheers--Sharon

thanks for replying! i''m sorry that your sister hasn''t found anything that''s worked for her yet

 

[mimzy]

Date: 11/8/2008 8:50:12 PM
Author: lauralu
are you talking about Occipital Neuralgia?


http://www.ninds.nih.gov/disorders/occipitalneuralgia/occipitalneuralgia.htm


If so, my daughter had the nerve block shot for this and it worked miracles for her

it''s not occiptal neuralgia, but i did read a lot about nerve block shots. i''m glad it worked so well for your daughter!

 

[Pandora II]

Date: 11/7/2008 2:03:04 PM
Author: MC
I tried Trileptal for mood and a rather inexperienced dr. put me on a whopping 1000-1200 mg per day. It was horrible and my coordination was off. I'd hit walls when walking around corners! I would stick my hand out to reach a drinking glass and MISS! I can laugh about it now, but at the time, it was unbareable! I didn't stay on it for more than six weeks. My advice is to try it at a very small dosage and you should be okay.

Has your dr. suggested Topamax? That is prescribed for headaches. Someone I know has been taking it and has about half the amount of migraines she use to have. . .it has a horrible reputation for causing cognitive issues, such as forgetting words while speaking, etc., so you'd want to take as little as possible.

(ETA - and like Pandora, I'm also on Lamictal and have had the best luck with it. I take 200 mg per day.)

Interesting. I was put on 1400mg of Tegretol and had the exact same side-effects as you. My vision was also so doubled I could barely see the computer screen at work.

I take 100mg normally of Lamictal which is enough to keep me about 5% on the high side of normal (I have bipolar) - since I really like my hypomanic episodes, my psych thinks mildly high is an acceptable compromise to keep me compliant.

It also works great on the nerve pain I have in my legs due to spinal stenosis. Sadly I didn't get lucky on the migraines (it works well for some people) - but I take zomig for them which is great.

Sadly, as I'm pg, I had to cut the Lamictal right down to 25mg (I'm ultra sensitive to small dose increase/decrease) for the first 12 weeks and it has made me very depressed - not helped by my employers deciding to make me redundant and an impending court case. They told me to start increasing again on Thursday and I also got the news that I can breast-feed on it - hooray!

The only thing you need to watch for with Lamictal is Steven-Johnson syndrome which is rare but potentially fatal (although you get plenty of warning that it's developing and you can stop the med). Titrating up very slowly seems to help prevent it. I use a 25mg every 3 - 4 weeks increase and have never had a problem. I based this on research I'd done from American studies I found online. My sister was told to titrate up by 25mg every other day - and ended up with the rash...

 

[MichelleCarmen]

Date: 11/9/2008 4:35:39 PM
Author: Pandora II

Interesting. I was put on 1400mg of Tegretol and had the exact same side-effects as you. My vision was also so doubled I could barely see the computer screen at work.

I take 100mg normally of Lamictal which is enough to keep me about 5% on the high side of normal (I have bipolar) - since I really like my hypomanic episodes, my psych thinks mildly high is an acceptable compromise to keep me compliant.

It also works great on the nerve pain I have in my legs due to spinal stenosis. Sadly I didn''t get lucky on the migraines (it works well for some people) - but I take zomig for them which is great.

Sadly, as I''m pg, I had to cut the Lamictal right down to 25mg (I''m ultra sensitive to small dose increase/decrease) for the first 12 weeks and it has made me very depressed - not helped by my employers deciding to make me redundant and an impending court case. They told me to start increasing again on Thursday and I also got the news that I can breast-feed on it - hooray!

The only thing you need to watch for with Lamictal is Steven-Johnson syndrome which is rare but potentially fatal (although you get plenty of warning that it''s developing and you can stop the med). Titrating up very slowly seems to help prevent it. I use a 25mg every 3 - 4 weeks increase and have never had a problem. I based this on research I''d done from American studies I found online. My sister was told to titrate up by 25mg every other day - and ended up with the rash...

You''re so lucky to enjoy the slightly hypomanic episodes. . . ah, I remember those good ole days

My moods were drastically up and down, which is why I take so much, even though I doubt I should be on such high of a dosage. 200 mg is probably extreme. . .it''s more of an insurance policy of sorts. . the depressive modes were rather severe.

Glad you can nurse on the med. What a relief not to worry about that!

 

[mimzy]

Date: 11/9/2008 4:35:39 PM
Author: Pandora II

Date: 11/7/2008 2:03:04 PM

Sadly, as I''m pg, I had to cut the Lamictal right down to 25mg (I''m ultra sensitive to small dose increase/decrease) for the first 12 weeks and it has made me very depressed - not helped by my employers deciding to make me redundant and an impending court case. They told me to start increasing again on Thursday and I also got the news that I can breast-feed on it - hooray!

pandora i just wanted to say that i''m really sorry that you''re having a difficult time during your pregnancy. i can only imagine how difficult it must be to be adjusting your medications at a time when your body is already going a little biserk and there is trouble at work. i''m so glad that they said that you can increase and use it while nursing. i really hope that things start going a little more smoothly for you.