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        New Message Board Archives >> Medications, Treatments, Therapies 2005 >> CABAMAZEPINE Has anbody used this?
        
(Message started by: gfdfirefighter on Oct 27^th, 2005, 11:04am)

Title: CABAMAZEPINE Has anbody used this?
Post by gfdfirefighter on Oct 27^th, 2005, 11:04am

Hi All

My GP put me on this about 6 weeks ago have gone through one bottle now on my refill it has decreased the number of headaches but i still get 3 a night but they are not as bad as before I started using it.
I need advice should i keep using it or request another treatment.

Smiley

Title: Re: CABAMAZEPINE Has anbody used this?
Post by E-Double on Oct 27^th, 2005, 11:44am

It's also known as tegretol.
I've had client's with siezure disorder who use it.
Heavy duty stuff.
I have not heard of CHers using it but, many of us (including myself) have been on other types of anti-siezure meds such as depakote, neurontin and topamax.

If it is working for ya go for it.
If not might try one of the meds I gave you a link to in your other post.

We are all different and unfortunately do not all respond the same way thus being such a difficult disorder to treat.

Best,

Ex2

Title: Re: CABAMAZEPINE Has anbody used this?
Post by Annette_Emond on Oct 27^th, 2005, 7:13pm

When Dave was on tegretol, it gave him seizures!!!!
So did Topomax.
Never again with the anti-seizure stuff!

Annette

Title: Re: CABAMAZEPINE Has anbody used this?
Post by gfdfirefighter on Oct 28^th, 2005, 11:32am

Hi Annette

I have been on this stuff for about 6 weeks working on my refill it has brought my attachs from 6 a night down to 2-3 the pain has gone from a 9 to about a 6 if i don't get to the O2 in time. But your making me nervous with the siezure stuff. Has your huband had a history of siezures or was it deffinently the meds?

Smiley

Title: Re: CABAMAZEPINE Has anbody used this?
Post by Lizzie2 on Oct 28^th, 2005, 11:56am

I haven't taken Tegretol, but I've known people who have. In the headache world, it's more common for migraine than CH, but still not used too often. I have wondered in the past if it's worth giving a shot!

I'm currently on 2 antiseizure meds....Lamictal and Lyrica. They're the tamest antiseizures I've ever taken.

Depakote ripped my esophagus to pieces and topamax made me permanently drain bamaged. Neurontin just made me feel like total crap. Zonegran made me puke my brains out.

It's amazing I keep saying yes to trying meds in this class. LOL Guess I can't lose hope!

Carrie :)

Title: Re: CABAMAZEPINE Has anbody used this?
Post by gfdfirefighter on Oct 28^th, 2005, 4:34pm

Hi Carrie

I know what you mean I felt like the walk dead on lithiam. :-/

Smiley

Title: Re: CABAMAZEPINE Has anbody used this?
Post by Gator on Oct 30^th, 2005, 12:37am

Carbamazepine/Tegretol is supposedly very effective in treating Trigeminal Neuralgia. My doc prescribed it for me back in January of this year. Didn't do anything for my clusters. It did give me a serious ringing in my ears that I have not gotten rid of to this day. Razzle frazzle, frickin frackin, @#$% @#$%%^

Title: Re: CABAMAZEPINE Has anbody used this?
Post by Beastfodder on Oct 31^st, 2005, 7:06am

I must say it's not good from my experience.

Was creatively diagnosed with Atypical Trigeminal Neuralgia and carbazemine is the drug of choice. It didn't really shift the headaches for me - and the side affects aren't too great (it made me feel even more stupid than normal/ lack of energy...) .

However that was over halfway through the last cycle and so inneffective - it led to me to the clusterhead diagnosis off the web (I'm textbook) and the rest is almost history (finger's crossed so very firmly).

I'm having my best managed ever cycle right now - just started using O2 (works for me) as well as clusterbusters (a breakthrough for me in coping with CH) . No polypharmacy, no side effects and only 20 minutes out of bed in the night - RESULT.

For the actual headaches immigram injections are still the best way to stop attacks - plus there's a (Fuvo?)triptan I was recommended which has a 26 hour lifetime - meaning you shouldn't be woken up with the beast - shall add the proper name when I can grab my notes.

Title: Re: CABAMAZEPINE Has anbody used this?
Post by Ueli on Oct 31^st, 2005, 9:11am

Carbamazepine / Tegretol is the stuff used to make Zombies. :-/

Title: Re: CABAMAZEPINE Has anbody used this?
Post by kcopelin on Oct 31^st, 2005, 10:21am

Years ago, while hospitalized for clusters at Hahn AB, Germany, they tried Tegretol. Made me so dizzy I fell out of bed. Didn't do a thing for the headaches.
But you never know-what works for some doesn't for others and ...Ain't it grand!
kathy

Title: Re: CABAMAZEPINE Has anbody used this?
Post by Jill on Oct 31^st, 2005, 2:53pm

Hello...

Kathy is right - what works for some people dont work for others.

I would say that if you arent having any bad side effects from it, than keep trying it because sometimes it takes awhile for a medication to really kick in and start working and sometimes the dose needs to be altered.

From personal experience, I had a doctor put me on Tegretol and I was on it for about two months before we moved and my new neurologist decided to change my meds. He said that it wasnt good for CH but I dont agree - it worked for me and was the only medication to do anything aside from pain killers. The hits were reduced, mainly during the day, and the intensity was decreased.

One note though - I was in the hospital for a month when they first tried it and they kept pretty close tabs on me while increasing the dose. They did checks of my eyes and coordination as it can cause some sort of brain problem. I dont think that it was a big risk but they did have to do blood work to check my levels so I would ask about that.

I hope this helps - I really didnt have any bad experiences with it and it worked. If it isnt causing problems for you, than I would give it a shot as it cant hurt... But I said that already.. sorry.

Good Luck
Jill

Title: Re: CABAMAZEPINE Has anbody used this?
Post by joke ten dam on Oct 31^st, 2005, 3:56pm

if it is also known under carbazemapine then I have tryed it several years ago with no affect what soever.

Title: Re: CABAMAZEPINE Has anbody used this?
Post by gfdfirefighter on Oct 31^st, 2005, 5:56pm

Hi All

Thanks for all the advice I went to see a neruo this morning she increased my dosage from 100 mg tabs to 200mg tabs since I have been using this my CH have deffinetly decreased I actualy have had 2 PF nights in a row ;;D so I guess this is working for me I have been on it for over 6 weeks no real side affects.(just a little twiching) ::) It's either my episode is coming to an end (I hope) or this stuff is really working for me. She also perscibed me an inhalant to stop the attach she gave me a choice of injection don't like needles. I was unable to get O2 as a script but I still have a bottle from the fire station.

So I am hopeing this is the begining of the end

Smiley

Title: Re: CABAMAZEPINE Has anbody used this?
Post by Annette_Emond on Nov 1^st, 2005, 8:01pm

Sorry I never got back to this thread with all the computer problems we've had. I missed your question until today.
Dave has had many many weird reactions to many many meds he has been given over the years. As far as the seizures go... he was ramping up on the meds and on day 4 I found him on the floor convulsing from head to toe. The neuro freaked and said no more of that! He was sent for an EEG exam and they could find no evidence of any seizure disorder- and he has never had anything like that occur again except when he was on extremely high doses of Prednisone he would have heavy duty muscle spasms- we have never been sure if it was the Pred or if it was the manifestation of whatever neurological disorder he still seems to have.
But- to make a long story short- if you read through all the info on the anti-seizure meds, they do tell you that it can cause seizures- rare but it can happen. Pretty scary for us- hope this med works for you like it has for many others.
Annette

Title: Re: CABAMAZEPINE Has anbody used this?
Post by gfdfirefighter on Nov 3^rd, 2005, 5:43pm

Hi Annette

I went to see the nerou on monday she increased my dosage to 400mg a day and also gave me imitrex.
I have actually been PF since last saterday. But last night i had a beer and a couple shots of tequila bad idea i felt one coming on and used the imitrex which worked well it knocked my CH back in about 10 min.
I am going to keep with the current theapy and stay away from the juice ;;D. I hope your husband is doing better

Smiley

Title: Re: CABAMAZEPINE Has anbody used this?
Post by pubgirl on Nov 3^rd, 2005, 5:54pm

If it is any help, Carbamazepine is used for one of the other shorter lived headache types similar to CH called SUNCT, and is used for that as SUNCT often doesn't respond well to the usual Indomethacin treatment.

At the last IHS meeting Don and some of the other OUCH officials attended in Rome one of the speakers recommended it for CH treatment, but this doesn't seem to be born out by the CH sufferers on here and OUCH Uk who have tried it. Other prevents such as Verapamil have a much better track record.

Wendy

Beastfodder: Frova, Migard or Frovatriptan is the name you are looking for but it is better to read the thread on this than start posting it here. It isn't really a prevent and I have never heard of anyone getting more than a 12 hour block from it.

Title: Re: CABAMAZEPINE Has anbody used this?
Post by Beastfodder on Nov 7^th, 2005, 9:45am

Sounds like it's under control which is fantastic - you haven't said whether O2 is an option you've tried - worth looking into with a good mask.

Result