Hi all,

I'm Frank, living near Ghent in Belgium. I'm 32 right now and suffering from CH since my 16. Since juli 2008, the CH appears to turn from episodic to chronic :s
I've tried almost all possible treatments.
From a professional point of view (I'm a pharmacist), CH is still an unelucidated and complex "disease", often completely misunderstood by people who don't know what CH, migraine or headaches are. I'm glad to join this forum.
If you want to know more, just shoot

Greetz

Frank

Thank's Jeanie
Just one more note: if people want some advice concerning drugs, please ask

Seriously
First, I studied pharmacy in Ghent, followed by research (male fertility problems), finally resulting in a phd

I think it would be interesting to have a better understanding of the potential side effects of the prescribed medication different sufferers have mentioned they are taking. Frank may be able to share some knowledge on why something like (for example) verapimil may work for some, not others, and the issues with it.

Funny how the written word gets interpreted differently by different people. I assumed that he meant that he could offer knowledge of medications that he has learned via his profession.

Guess my radar isn't as fine tuned as others.

Marc wrote on Feb 23^rd, 2009 at 6:32pm:


My radar has to be in tune to not only protect this site, but the people on it.  While I'm sure he means no harm and he truly will give information regarding reactions and such, I want to make sure people are cautious in the info they obtain, especially when it comes down to something as dangerous as this.

Welcome to the board. The more medical people we get on this board, the better! Appreciate your offer of advice. Hope you understand Steph's caveat about being careful with advice posted on her site!

Look forward to making your acquaintance. If you haven't tried 02, please give it a shot. It's been a wonder worker for me!

Joe

Mrs Deej wrote on Feb 23^rd, 2009 at 3:01pm:


This is a little misunderstanding I think. I'm not here to sell any drugs or to stimulate people using drugs. In contrary, my opinion is: the less drugs you need to take, the better ... My statement here was to offer people the opportunity to ask questions about their medication. It will not be possible to buy any drugs

Thank's for the welcome everyone

I use oxygen to abort attacks but since a few months, it isn't working as good as when I started using O2.
@Clusterchuck: It isn't chronic yet (that's why I wrote "appears" ), but instead of a cluster of 1-2 months, it's already one big cluster since july  In addition, the attacks are getting worser and worser.
Anyway, thank's for all the comments and if there are questions, please shoot

I have a question about verapamil.

What is the best way to wean off it? I was on 520mg per day and I wean off 40 mg per week. I have been weaning off for 3 weeks so I am on 400mg per day now.

Ellick.

Ellick wrote on Feb 24^th, 2009 at 12:06pm:

Hi Ellick,

My father (physician lol) advised me to decrease the dose with 80 mg every two weeks, at least when you're painfree for a couple of weeks. Normally seen, this should work fine without having side effects. So, your way of weaning is OK. Did your ecg showed abnormalities at these high concentrations of verapamil.
Good luck!

Best regards,

Frank

PS if you should experience side effects during weaning, never hesitate to contact your physician.

Marc,

After I made that post (which I did in a hurry) I felt it was the wrong thing to do because of what you are saying.

I have taken verapamil about 5 times over the last 3 years. The first time I used it, my Dr told me to just stop. I did this with no ill effects. Over the next episodes I had to go a lot higher in dosage and another Dr I saw at that time wrote to ask advice from a neuroligist because he wasn't sure about the way to wean off because it's use in CH is a much higher dosage. The advice that came back was wean off very slowly.

I have noticed that some people on here wean off much faster. My Dr wants me to stay on it but I am not keen (1) because we use it at a much higher dose than it is intended and (2) when I am in remission I train quite hard.

I have no ill effects from weaning off but I do have some side effects on the high dosage.

Maybe there is no definitive way but if there is I thought a pharmacist might know. The Drs don't seem too.

However, It seems to me on reflection that if Frank wishes to answer it is best in a pm.

Apologies everyone, I made a mistake asking that openly, although I know it has been touched on in other posts.

Ellick.

Marc,

How did you see that verapamil was working less?
Was the frequency of attacks or the duration of the cluster altered?

Frank,

The effectiveness gradually reduced over time, allowing an increase in both frequency and intensity. It has never been 100% effective for me, but it is much better than without.

Marc