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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Cluster sufferer for 14 years...first time at site
        
(Message started by: shoedog111 on Oct 14^th, 2004, 5:19pm)

Title: Cluster sufferer for 14 years...first time at site
Post by shoedog111 on Oct 14^th, 2004, 5:19pm

Hi...this is the first time I have ever visited a site specifically designed for cluster headache sufferers. Funny, when I refer to the headaches, to anyone most notably my wife, I refer to them as "it," as if they were a living breathing entity. And the headache is.

I have been battling these monsters for 14 years now, and have always been told there is no cure and no real treatment. Damn depressing if you ask me...and to compound it I have high blood pressure which leaves several migraine type medications off limits to me...as they will conflict with some meds I do take for the pressure. I know...LIFE SUCKS SOMETIMES!!!

I am one of the fortunate, however, as my headaches will go into remission for years at a time. However, I am now miraculously in my "headache season." Sleep is my enemy. Last night I was hit with one so hard...as typical an hour into sleep, that pacing was difficult, lying down while kicking my legs and rolling on my head was impossible...so I just did what I do...a bit of both until I pass out on the couch from exhaustion...oh and the pain finally has the sharp edge taken off.

If anyone has any non-med ideas for the clusters I would be forever greatful. Don't be bashful. Bring em on...at this point I will try anything...oh, and my helpless wife (she feels so horrible for me...she can't do anything for me and I don't want a sole near me) would be happy if anything would work as well. Thanks.

Title: Re: Cluster sufferer for 14 years...first time at
Post by JJA on Oct 14^th, 2004, 7:24pm

I don't have a non-med idea as much as an over the counter med idea. Try 6 to 12 mg melatonin before bed time...after you talk to your doctor of course. (available at any drug store/ walmart etc) I don't think it should affect your bp, but I don't know what you're taking now. Have you talked to your doctor about verapamil? It is a bp medication that just happens to be the most common cluster headache preventative med. Also, have you tried oxygen? You will find all kinds of information about them here. Read and ask. Good luck.

Jesse

Title: Re: Cluster sufferer for 14 years...first time at
Post by BlueMeanie on Oct 14^th, 2004, 7:34pm

Welcome Shoedog,

Not sure about non-med abortives other than lots of Coffee and ice packs for the head. Go to an Air Conditioner and crank it up and breathe the cold air.

Title: Re: Cluster sufferer for 14 years...first time at
Post by PerryGR on Oct 14^th, 2004, 8:52pm

Welcome Shoedog,

The first non-med abortive that comes to mind is oxygen (JJA has already mentioned it). It's effective for about 80% of people with cluster headache when administered correctly (check out the info on the left).

As BlueMeanie has mentioned large quantities of caffeine (a soda for example) as soon as you feel it coming might help. Most find some relief in chilling (ice packs on the temple/face/back of the neck, air-conditioning, cold water) or warming (hot/warm showers, holding their heads over steaming water) the affected area.

Something that used to work for me was applying an ointment (containing diclofenac, which is a non-steroidal anti-inflammatory analgesic) on the affected area (over my eye, temple and back of the neck).

Hope you find some relief,
PFDAN to all,
Perry.

Title: Re: Cluster sufferer for 14 years...first time at
Post by nani on Oct 14^th, 2004, 9:24pm

welcome sorry you're here. Be careful about too much caffeine if your bp is high. I also can't use any triptan so oxygen is probably my only choice as an abortive. Ice can help you through the worst part. [smiley=hug.gif]

Title: Re: Cluster sufferer for 14 years...first time at
Post by BobG on Oct 15^th, 2004, 6:29am

If your blood pressure med is verapamil then maybe you can get the doctor to increase the dose. Some people here are taking as much as 800-900mg a day. (Mention that amount to your heart doctor and he'll probably have a heart attack himself).

O2 like the others above said, click the 'oxygen info' button on the left side of your screen.

Click the 'water X 3" button also.

Ice packs on the face or heat packs, whichever you find the best for you.

Sleep with the head elevated or sitting up. I know, not very comfortable but it may lessen the night time attacks.

Good luck. Let us know.

Title: Re: Cluster sufferer for 14 years...first time at
Post by don on Oct 15^th, 2004, 7:25am

Heres a few

http://www.clusterheadaches.org/resources/non_script_treat.htm

Title: Re: Cluster sufferer for 14 years...first time at
Post by Bob_Johnson on Oct 15^th, 2004, 8:11am

I prefer learning from well organized books. Would recommend either of these:

ANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

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.

----
Take a look at: WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.

Title: Re: Cluster sufferer for 14 years...first time at
Post by thebbz on Oct 15^th, 2004, 9:00pm

Hello Shoedog,
Ditto the info from Bob. Knowledge is power with these things ..Study for many reasons the more you know the better to relate info to your neuro. Some do exercise,it's a trigger for others.. 8)
BB