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mommapam CH.com Newbie Offline Posts: 7 Goodlettsville, TN Gender:	Tegretol Jan 18^th, 2013 at 8:43am Hi everyone. It's been 2 years since I've been here...and yesterday I finally got the official diagnosis from my neuro that I have CH. He prescribed me Tegretol, O2, and Fioricet. I'm reading some nasty things about the Tegretol online. Does anyone have some insight? Thanks so much!
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Bob Johnson

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Re: Tegretol
Reply #1 - Jan 18^th, 2013 at 9:32am

The O2 is becoming a standard abortive treatment for Cluster but the other two are not first choice meds. Either he has some special considerations for using them, which you have not mentioned here, or you have a doc who is not well informed.

Suggest you print out the PDF file, below, and use it as a tool to discuss why he is not using these meds.

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Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

(96 KB | 16 )

Bob Johnson

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Guiseppi

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Re: Tegretol
Reply #2 - Jan 18^th, 2013 at 9:36am

The good news is oxygen is good for CH, the best abortive out there, the bad news is Fioricet has no business in CH treatment, the tegretol...I found some posts going back to 1998 and as recent as 2005 and none of them were positive!!!

These are the docs others have used in your area and have recommended, any near you? I fear your current doc is NOT very up to date on CH:

Clarksville:
Dr. Constance Johnson
Neurological Medicine

Germantown:
Dr. E. Arthur Franklin (PCP)

Memphis:
Dr. Michael H. DeShazo
Semmes-Murphey Neurologic & Spine Institute
Nashville:

Dr. Jan Lewis Brandes
Nashville Neuroscience Group

Ooltewah:
Dr. David V. Lounsberry (PCP)
Erlanger Ooltewah Family
Medicine

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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mommapam

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Goodlettsville, TN
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Re: Tegretol
Reply #3 - Jan 18^th, 2013 at 9:53am

I have read some things about this medicine that are really scaring me. I'm afraid to take it...and my neurologist has been in practice for YEARS....so that makes me even more nervous. There was no "reason" he gave me for prescribing this, just that this has been known to work" so he'd like "to try it and see how it does". He's Dr. Anderson, at Affiliated Neurologist in Goodlettsville, TN. I'm not sure if that's appropriate to put out there, but that's my neuro.

I go back February 15th for blood work to see how my liver is doing (??!!!???!!!). He said they'll have to monitor my blood work closely. He said I'll eventually bump up to 1200 mg a day, but now I've started out at 200 mg a day, each week it increases.

Germantown and Nashville are close. The problem is my insurance requires a referral, so I'm not sure what will happen now since my current Neuro was referred by my family doctor and I've been working with him for over 2 years now.

This is the 3rd time we've switched up my med's so he's always said this was a trial and error deal.

This is day 19 of my current set of clusters. This round started 12/30/12 and is going stronger than it ever has. 4 ER trips.

I'm really scared. Everything had been so quiet that I actually was stupid enough to think they wouldn't come back (tears). My husband and my 17 year old son are both freaking out because this time is way worse than previous times.

I feel like I'm walking around in a twilight zone confused and horrified. I shouldn't be because I know what's happening and what's coming, but I can't help it.

This medicine scares me.

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https://www.facebook.com/PamelaBrociusPhillips

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Guiseppi

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Re: Tegretol
Reply #4 - Jan 18^th, 2013 at 10:16am

There's a lot about CH that's scary, we understand that part all too well. Sad

The biggest problem with CH is it's an obscure, rare issue, most docs never see it. Docotrs get a total of about 4 hours education on ALL headache types, garden variety neuros don't get much more then that. So it's sadly all too common to see docs just guessing and taking stabs with meds they've "heard" others have success with.

Whilst you try to figure out referrals with the dreaded insurance company....another road we all know too well...and believe me, you desperately need a referral to a neuro knowledgeable on CH......please read this link. It's a simple daily vitamin/anti inflammatory regimen that got started on this board about 3 years ago. Follow this link to the medications section of this board and read the post "Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

I've been pain free for 3 years after well over 30 years of episodic CH using this regimen. Many are reporting similar results.

It's pennies a day, good for you even without CH, might make the referral unnecassary.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Tegretol Reply #5 - Jan 18^th, 2013 at 10:35am A referral to a new headache doc would come from your primary care doc, not from the current neurologist. While you need to explain why you want to make the change, you have every right to work with a doc who you trust.
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mommapam CH.com Newbie Offline Posts: 7 Goodlettsville, TN Gender:	Re: Tegretol Reply #6 - Jan 18^th, 2013 at 12:47pm Great, thanks everyone!!! I"ll keep you updated.
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chrisw

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Re: Tegretol
Reply #7 - Feb 22^nd, 2013 at 4:23pm

hi, just so you know, I took Tegretol for many many yrs for my seizures, all the while my CH would come nd go like they always do. The tegretol didnt do anything for ha, and I have never heard of a nuero prescribing it for CH. Please talk to someone else , it sucks to take all the drugs I have to take for my epilepsy, and if you dont have to take them,,,,DONT. Good luck. Kiss

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ndhillst

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Re: Tegretol
Reply #8 - Feb 24^th, 2013 at 9:46pm

I'd been taking Tegretol as well for depression and it did nothing for my headaches. I started Depakote and Verapamil and my headaches are gone for the moment (~ 3 weeks headache free). Interestingly, when I saw my psychiatrist he took me off the Tegretol since Depakote does essentially the same thing for depression. I had horrible headaches for a couple days when I stopped the Tegretol, but no CH.

Anyway, in short, Tegretol did nothing for my CH.

O2 for me was the best way to get rid of a headache - I had daytime headaches and used 15ml for about 15 min to get rid of the CH. There was still pain for the 15 min, but if you can tell the headache is starting, you can possibly avoid the worst of it - mine were lasting 2.5 hours, so 15 min wasn't so bad by comparison, especially knowing the headache would end soon.

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Beastfodder

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O2 and clusterbusters
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Cheshire, United_Kingdom
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Re: Tegretol
Reply #9 - Feb 25^th, 2013 at 11:03am

Tegretol - that takes me back a few years.

It's perfect for CH apart form a couple of things. One's the side effects and the other was that it didn't work at all.

At the time it my doctor prescribed it for an earlier misdiagnosis of Atypical Trigeminal Neuralgia and I still remember the weight gain/depression/anxiety/itchy skin issues that resulted from it.

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O2 and clusterbusters - naturally

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