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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> Helping tricks or way to make it even harder?
        
(Message started by: Nimbus on Jun 26^th, 2003, 9:58am)

Title: Helping tricks or way to make it even harder?
Post by Nimbus on Jun 26^th, 2003, 9:58am

:DHello, this is my first post here.

First and foremost, I'm not too good in english (I'm a truly french canadian) so please don't be too harsh on me with the typo.
A word on me:
I'm 26 years old and I've been suffering cluster headache since I'm 21. I'm using Imitrex and something else related to blood pressure in between. Every years I have this long period of headache, usually 2 by days that cause me to go nuts. This years it's different. I now have 4 crisis by day since one week. Each increasing in power. No sleep, cannot work, no food, always fearing to go to bed. My supporting wife can't do nothing and at the emergency room it's like waiting 4 hours so they can tell me that 'They can't do nothing more' (like yesterday). I found myself thinking to death lately, like every other years after one or two week of suffering. Am I weak? Or is it that I'm lost in the fog? To make it short : I'm really exhausted. It's strange how I feel so much better when it's over. I can't stop wondering how can such pain exist without actually killing me. ???

Now for the subject:
I don't drink coffee, eat chocolate and I stopped taking alchool and smoking. I don't eat thing with MSG nor any cold meat like ham and pepperoni. I'm doing all of this wishing that the next one [crisis] will be less hard if I do that or that I will skip the next one if I take care. I'm now doubtful. My life is extra boring these time around. Even if I do all of the above, I'm still having the same headache, days after days, roughly at the same time each day. Is it really helping to do that ?

Title: Re: Helping tricks or way to make it even harder?
Post by CJohnson on Jun 26^th, 2003, 10:20am

If I go jogging/running as soon as I feel the pain coming on, my headaches go away in 5 - 30 minutes. It also keeps the intensity of the pain down. Give it a try. It works for a few people. If it doesn't work, at least it didn't cost anything.

PFDANs
-Curtis

Title: Re: Helping tricks or way to make it even harder?
Post by Bob_Johnson on Jun 26^th, 2003, 1:08pm

You did not tell us whether your doctor has any experience in teating headache. If you have a choice, try and find a doctor with a special interest in treating headache.

The bood pressure medication is probably not going to help you. You should return to your doctor and ask for another medication to PREVENT your attacks. Look at the medication button on the left side of this page for suggestions.

I would strongly suggest that you buy this book and educate yourself on treatment:

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: Helping tricks or way to make it even harder?
Post by Pistol Pete on Jun 26^th, 2003, 1:20pm

No not weak, these things are terrible. To quote Dr. Peter Goadsby, " The pain of CH is worse than natural childbirth or even amputation without anesthetic."

As for the triggers, no telling, they are different for everyone. Alcohol seems to be a common trigger, but after my first two cycles, alcohol was no longer a trigger. In fact, for the last 10 years, the only trigger I can identify is time of day.

What you are doing cannot hurt and could help, although it doesn't seem to in your case.

How are you taking the Imitrex, tablet, inhaler, injection? Anything other than the injection probably takes too long to get into the bloodstream.

Have you tried the other free treatment, water? Have you seen a neurologist? Have you had a chance to try any of the preventative drugs such as Verapanil or any of the others listed here and on OUCH?

Hang in there, you are definitely not alone.

Title: Re: Helping tricks or way to make it even harder?
Post by Nimbus on Jun 26^th, 2003, 3:06pm

Thank you all.

to CJohnson:
Yes, to jog can help a bit but it is kind of hard this week. The temperature is a pretty constant 34 celcius since the last 8 days. Sometimes it help sometimes not.

To answer Bob_Johnson:
yes, my doctor is a specialist in headache. He is in fact the director of the Headache clinic here in my city. And thank you for the ref, I'll make sure to get the book

And to Pistol Pete:
I'm taking Imitrex tablet - 100mg. To quote you "the only trigger I can identify is time of day". That's what I'm thinking right now too.

Does the hot temperature affect your cycle or anything ? It seems that my CH cycle started on a hot day after a cool day - we broke the record several times this week - and for the first time, it started two month before I was expecting it.

Title: wRe: Helping tricks or way to make it even harder?
Post by Pistol Pete on Jun 26^th, 2003, 3:24pm

My cycles do not seem to have anything to do with the weather, I have had them start in both warm and cold weather.

Regarding the Imitrex tablets, how long do your headaches last?

I just checked Glaxo's site (www.gsk.com/products/imitrex_us.htm) and tablets are less than 20% successful at 30 minutes, less than 40% at 60 mins and about 60% successful at 120 mins.

Title: Re: Helping tricks or way to make it even harder?
Post by Nimbus on Jun 26^th, 2003, 4:13pm

My headache last from 30 minutes to 90 minutes.
Right now I have an average of 60 minutes.

Title: Re: Helping tricks or way to make it even harder?
Post by vig on Jun 26^th, 2003, 4:22pm

Hang on Nimbus,
there are plenty of bright people here that want to figure this out. Everybody is contributing.
It's the medical version of Open Source software.
welcome

Title: Re: Helping tricks or way to make it even harder?
Post by Pistol Pete on Jun 26^th, 2003, 4:25pm

Your odds of getting relief from the tablets are not very good. Imitrex does not work for all of us (including me) and the time it takes for the tablets to work makes the odds even worse.

Ask your doctor about getting the injections or the inhaler, much, much faster.

In the meantime, if the headaches are arriving at the same time each day, try taking the tablets an hour before the headache shows up.

Title: Re: Helping tricks or way to make it even harder?
Post by eyes_afire on Jun 26^th, 2003, 5:03pm

Hi Nimbus. Don't worry, you are in good company. Like many of us here, you have discovered that the CH attacks will come regardless of diet. For many of us, it does not matter what we eat, the CH attack will come anyway.

Is the blood pressure medicine you are using called Verapamil or Calan? If so, that shows that your doctor at least has an idea of what he is doing. Blood pressure medicines like Verapamil or Calan can be very effective for preventing attacks... but maybe you need to take a larger dose. Many of us need to take 360 mg or more for it to be effective. Check with your doctor.

Good luck. You are not that unusual, many of us know what you're going through.

--- Steve, one of many...

Title: Re: Helping tricks or way to make it even harder?
Post by cathy on Jun 26^th, 2003, 5:20pm

Welcome Nimbus...you sound like your having a rough time...good job you found us....CH never killed anyone, this place is a wonderful board of caring folks who understand...vent away.

Wishing you PF times.

Cathy

Title: Re: Helping tricks or way to make it even harder?
Post by Roxy on Jun 26^th, 2003, 6:24pm

Nimbus...just hang on and fight all you can. Talk to your doctor about the imitrex injections and 02. Oxygen can abort most ch's, and it's easy and inexpensive to use. Here is the link where you can read more about it.

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

Hope it gets better for you,
Tracey

Title: Re: Helping tricks or way to make it even harder?
Post by jonny on Jun 26^th, 2003, 6:51pm

Get in the damn boat and grab the oar with your initials on it.......dont make me call Pam the master blaster!

Welcome aboard, Nimbus ;D

.........................................jonny

Title: Re: Helping tricks or way to make it even harder?
Post by MarkHW on Jun 26^th, 2003, 9:43pm

Hi Nimbus...
Welcome... Sorry you are having headaches!

I tried cutting out the same list of triggers you did. I have cluster and migraine and it helped with the migraines but did nothing for the clusters.

Being over heated does increase the # of clusters I have. Getting overheated will increase the number of clusters and change the time of my attackes. If I usually get them at 7 AM, 2 PM and 5 PM and get overheated at 11 AM - I will have one then! Alcohol does the same thing to me.

Imitrex pills did nothing for me. The nasal spray works sometimes, but the injections work every time!

Good luck & welcome to the family!
Mark