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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Glad to have found you
        
(Message started by: Isaac on Dec 19^th, 2004, 8:54pm)

Title: Glad to have found you
Post by Isaac on Dec 19^th, 2004, 8:54pm

As a newcomer here I'm sad to be here in the sense that I wish I never had another headache, and I wish that this site didn't even have to exist. That disclaimer aside, it was a tremendous help to me. Knowing that there are others out there going through the same thing, fighting it together, and offering sympathy to each other - it's a wonderful thing here. I knew that there must be other people dealing with the same thng, but reading through the message board I finally heard from them. Best of all, it was great to hear from people who don't have suggestions for what I'm doing wrong to give myself headaches, and understand the fact that sometimes there's just nothing that can be done.

I've been getting headaches since I was 16 - for 11 years now. They were diagnosed as migraines, and until the last few weeks, I always told people that I had migraine headaches. Reading through this site and the OUCH website, I realized that many of my symptoms were consistant with cluster headaches - the pain from my headaches can be exruciating - an 8 or 9 on the kip scale, and is always on one side of my head or the other. The headaches come in bunches, which I typically seem to get hit with in the late fall, and generally last for about four to six weeks. The headaches generally come at night, and sometimes wake me up, but can occur at any time of the day.

What made me think that my headaches were migraines instead of clusters was that I tend to tear from one eye (the side the headache is on) and get congested in that nostril. Also, when I'm having a headache, I like to take a walk or pace, which I understand is typical of cluster sufferers, whereas migraine sufferers typically prefer to lie still (I wish I could do that).

I have a neurologist who is a headache specialist who I like - he's happy to experiment with new drugs. I take maxalt as an abortive, and it generally works well, but I don't like to take it too often, I feel like the more often I take it the less effective it is. I also go to an acupuncturist and I feel like the acupuncture is helpful in reducing the severity and frequency of the attacks.

My question is that given that I now think that I have cluster headaches, should I be thinking differently about treatment? It seems to me that the causes of cluster and migraine are very similar, and so the treatments shouldn't vary so widely, but perhaps I'm wrong. I'm especially curious about verapamil and magnesium supplements. In particular, if my cycles generally only last 4-6 weeks, is it worth starting a verapamil regimen at the beginning of a cycle? Are there other preventative treatments I should be considering?

Right now, I feel like the worst of the cycle is over. Obviously, the severe pain in the worst aspect of the cycle, but even when I don't have a really bad headache I seem to be at a 2 or a 3 on the kip scale, feeling like I have to be very careful and also feeling generally crappy. Plus, the bad headaches can leave me exhausted for 24 hours - it's not as bad as being in horrible pain, but it's still pretty depressing. Fortunately, I'm in between jobs right now - I'm consulting and can afford to have days where I'm not so productive.

From reading the message board, I can see that there are many folks out there who have it much worse than I do. I admire all those who are fighting through the pain on a daily basis to hold down jobs and raise children. Count me as one more sympathizer, I guess. I wish everyone many happy days free of pain.[b][/b]

Title: Re: Glad to have found you
Post by vig on Dec 19^th, 2004, 10:13pm

Welcome Isaac!

Title: Re: Glad to have found you
Post by E-Double on Dec 19^th, 2004, 10:31pm

Right on another NYer......
Drop a line bro!

Feel good and Research!

Eric

Title: Re: Glad to have found you
Post by thebbz on Dec 19^th, 2004, 11:00pm

Hello and welcome.
Again study all you can. Knowledge is power. Get with the neuro and confirm the CH as they have many different drug therapies to help. Hope the episode ends soon.
BB

Title: Re: Glad to have found you
Post by nani on Dec 20^th, 2004, 10:18am

Welcome Isaac and sorry you're here. Go back to the headache specialist (I'm surprised he didn't catch your symptoms and diagnose CH) and talk about preventatives and abortives before your next cycle. Have a plan in place. Pain free wishes to you.

Title: Re: Glad to have found you
Post by Bob_Johnson on Dec 20^th, 2004, 12:12pm

A good starting point is the "medicaton" button (left). Here, you see what folks are using and how they rate success. Print this section to use as a talking point with your doc.

Several sections in OUCH on treatment to explore. Also, 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.

If you into serious learning, I strongly suggest the first title or, for easier reading, the second:

MANAGEMENT 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.
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Perhaps, one of the hardest aspects of Clusters to deal with is this: The response to any paricular treatment varies between us and a drug which has worked may stop working. WHY? No medical answer yet--but accept this as a "normal" part of the disorder, should it happen to you. This is one problem where self-education is very important and, unless you are blessed with an excellent doc, you will likely end up educating the doc on how to treat you--at least many of us walk that path.