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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hi from Germany
        
(Message started by: martinb on Jan 23^rd, 2005, 12:49pm)

Title: Hi from Germany
Post by martinb on Jan 23^rd, 2005, 12:49pm

Hi everyone,

first of all let me say: Great site and a great community!

My name's Martin, I'm 28 years old, and I live in Luebeck, Germany, and I work at Luebeck University as a research assistant.

I was diagnosed with CH a few years back. Recently, I found this website and... let's say I was mildly shocked ;-) to read some of the descriptions of the kind of suffering clusterheads can go through -- I seem to be lucky to have a mild form of CH (hope it stays this way, touch wood...), I'd say I've never been beyond a 7 on the Kip scale. In light of this, I still have lingering doubts whether my doctor's diagnosis was really correct... still, the typical symptoms are all there: one-sided (left), pain concentrated in the eye socket and temple, "pacing", not sensitive to traditional painkillers, seasonal (I used to get them in November, now they seem to have shifted to January).

It used to be that they were only triggered by alcohol, so I just stayed of alcohol for the duration. Unfortunately, I've now started getting CH attacks spontaneously, typically in the mornings just after waking up. I found out by chance that coffee helps -- a few cups of strong coffee when I get the "shadows" seems to be a 100% effective cure for now, and I see that others one the forum have found caffeine to be helpful, too.

I haven't seen my doctor about this since my initial diagnosis, and I'm not on any kind of medication because until this year, staying off alcohol was sufficient to avoid the attacks. I'm planning to see my doctor again but wouldn't want to use any medication with significant side effects at this point because a) my pain level, while unpleasant, is still bearable and b) coffee seems to be doing a good enough job.

Is there anything that's relatively free of side-effects that I could ask my doctor about? What about oxygen? And what is your experience with CH progressing over the years, i.e. should I expect my pain levels to get progressively worse over time (god forbid)?

Thanks for listening, and wishing you pain-free days!

Martin

Title: Re: Hi from Germany
Post by sandie99 on Jan 23^rd, 2005, 1:44pm

Welcome aboard, Martin! :)

So sorry that you have CH... :(
But I am very happy indeed that you found this site & CH family! We're here for you 24/7.

I wish you loads of PF days,
Sandie

Title: Re: Hi from Germany
Post by Ronny on Jan 23^rd, 2005, 3:41pm

Hi

About the meds,

Many of us take Verapamil as a preventative (for months in a row, daily) without side effects. It helps a lot for most of us.

Oxygen can only be used as an abortive (like your cafeine).
At the moment you feel one coming you can use oxygen to abort the attack.

Verapamil is designed for heart diseases but helps for CH too, it lowers the blood pressure and takes 1-2 weeks to start working.
It is a Beta Blocker, what it exactly blocks? I dont know but it helps.

Title: Re: Hi from Germany
Post by martinb on Jan 23^rd, 2005, 6:16pm

sandie99, thanks for the warm welcome!

Ronny, thanks for the information -- I'll definitely ask my doctor about Verapamil.

Title: Re: Hi from Germany
Post by LeLimey on Jan 23^rd, 2005, 6:49pm

Hello Martin and welcome! Read up as much as you can, and if possible definitely try oxygen. For me at least its fantastic
Let us know how you get on
Helen

Title: Re: Hi from Germany
Post by Filbert on Jan 23^rd, 2005, 9:07pm

on 01/23/05 at 15:41:00, Ronny wrote:

Sorry Ronny and this is really not a personal attack on you but I think care should be taken before this advice is given. First of all "no side effects" well there are check up on the many posts about constipation for a start. More importantly there is some evidence that verapamil can extend cycles or even turn epis chronic and surely this should be added as a proviso at least.

Cheers Filbert.

Title: Re: Hi from Germany
Post by RichardN on Jan 23^rd, 2005, 11:23pm

Welcome Martin

02 is my only abortive . . . . and I can usually kill the beast within minutes if I use it early-on in the attack. Must be used correctly with proper mask (non-rebreather) . . . read and copy 02 info for your doctor.

Verapamil is my preventative, and Filbert is right about the constipation problem, though it's relatively easy to combat with diet (for me). I currently use 240 mg Verap. (120 morning and evening) . . .have used as much as 360. There are those here that take considerably more without problems evidently.

I am also using Melatonin (6mg) each evening which I believe is helping to reduce the number and intensity of nightime hits. Melatonin is over-the-counter and is taken half hour or so before bed.

Water/water/water . . . especially as you aren't on any medication at the moment.

Read, read, read . . . . .and do try and get a script for 02.

Be safe - PFDANs,

Richard

Title: Re: Hi from Germany
Post by Bob_Johnson on Jan 24^th, 2005, 7:33am

Verapamil has been a major preventive med but it should not be taken if you are eating grapefruit (or juice). See the medications section, looking for message, "grapefruit and medication interaction").

It is, otherwise, a safe med.