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

Hi Frank! [smiley=wave.gif]  Welcome!  Make yourself at home.  

Jeannie  

Edit because I can't spell my own name!  LOL!

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

blackpearl wrote on Feb 23^rd, 2009 at 2:43pm:

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

You gotta be shittin me.........Right?


       Kinder gentler Potter

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

blackpearl wrote on Feb 23^rd, 2009 at 2:43pm:

Just one more note: if people want some advice concerning drugs, please ask :)

While I'm sure you have alot of information regarding pharmaceuticals, you may want to be VERY careful about the information you are giving...regardless of your career.  We (ch.com) will not be held liable for your "drug advice" or the information you give.

We are NOT a drug-seeking website!   ::)  And MOST clusterheadaches aren't treated with pharmaceutical cocktails.

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.

QnHeartMM wrote on Feb 23^rd, 2009 at 5:09pm:

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.

I'm sure this is what he meant by his statement!

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.

All those years of being a pothead must have taken the edge off the blade, eh Marc.

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

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.

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.

blackpearl wrote on Feb 23^rd, 2009 at 2:34pm:

Since juli 2008, the CH appears to turn from episodic to chronic

You need to go for a full 12 months, before you can be officially classified as chronic.  Even if you ARE chronic, it is not the end of the world!

I have not seen any mention of oxygen for an abortive.  Have you tried that?

Chuck

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

Welcome to the board Frank, and nice to see another Dutchspeaker - I'm from the Netherlands myself, near Maastricht.
I for one think it can be a huge asset to have someone on here with some medical knowledge.

Greetings, Pascal.

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

blackpearl wrote on Feb 23rd, 2009 at 2:43pm: Just one more note: if people want some advice concerning drugs, please ask :) While I'm sure you have alot of information regarding pharmaceuticals, you may want to be VERY careful about the information you are giving...regardless of your career.  We (ch.com) will not be held liable for your "drug advice" or the information you give. We are NOT a drug-seeking website!   ::)  And MOST clusterheadaches aren't treated with pharmaceutical cocktails.

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 :)

Quote:

I use oxygen to abort attacks but since a few months, it isn't working as good as when I started using O2.

You're in the right place, Frank.  Great oxygen link highlighted to the left on the tabs and personally written assistance with oxygen use methods and equipment abounds.

Have you been aided with any other back up abort lately, and how has a preventative search been going?  

Welcome and hang around.       :)

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.

I can't help wonder what your doctor said to do?

Some people are able to quit "cold turkey" and others need a very long slow taper. The taper speed has potential risks, depending upon several factors in your overall health, such as blood pressure, heart rate and a whole host of other factors.

What one person does successfully could be lethal for the next.

Marc

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

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.

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 wrote on Feb 24^th, 2009 at 2:14pm:

I can't help wonder what your doctor said to do? Some people are able to quit "cold turkey" and others need a very long slow taper. The taper speed has potential risks, depending upon several factors in your overall health, such as blood pressure, heart rate and a whole host of other factors. What one person does successfully could be lethal for the next. Marc

That's correct. If ecg is normal and there are no other side effects, the way of weaning, as mentioned above, should not give any problems. I should not advise to perform cold turkey, even if you're health is ok.

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.

I didn't mean to scold you for asking a good question, I was just saying that some folks are quite sensitive to abrupt changes.

For what its worth, I stopped cold turkey twice. Once from 480mg/day for 7 years straight and once from 720mg. Never had a problem of any kind and my BP/heart rate stayed normal.

I've been chronic for 12 years and Verapamil loses effectiveness over time for me. I had to stop for a break, then restart for it to wor again.

Marc

Marc,

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

Why is it that Verapamil works for me during some cycles but doesn't seem to touch other cycles?

Jeannie

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

'I didn't mean to scold you for asking a good question, I was just saying that some folks are quite sensitive to abrupt changes.'


I didn't take it that way Marc. I just worried a bit that advice I received might lead others to try what wasn't suitable for them. In the event it was not.

Best wishes,

Ellick.

Welcome to the board, Frank!  I'm glad to see a pharmacist come aboard...although, after you start fielding 10,000 questions about meds, you might be sorry you spilled the beans!!  ;D
-Paige

UnderTheRadar wrote on Feb 25^th, 2009 at 8:52pm:

Welcome to the board, Frank!  I'm glad to see a pharmacist come aboard...although, after you start fielding 10,000 questions about meds, you might be sorry you spilled the beans!!  ;D -Paige

Hi Radar,

Lol! Until now, it's ok hehe ;) If I can help people, why not!

Greetz,

Frank