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        Cluster Headache Help and Support >> Getting to Know Ya >> Newbie Wife of Sufferer
        
(Message started by: scarlet52698 on Feb 17^th, 2008, 8:53am)

Title: Newbie Wife of Sufferer
Post by scarlet52698 on Feb 17^th, 2008, 8:53am

Hello, I'm so grateful to find this site as we have been completely overwhelmed by my husbands bout with cluster headaches.

He has suffered migraines since age 6 and then seven weeks ago he started having cluster headaches. We went to a sleep doctor because they were coming at night but now I see that we need to move on to a neurologist. This is our first bout with this condition and I'm heartbroken to see my husband in so much pain.

We have been to the ER once and they gave him compazine and indomecian (sp?). He didn't take the indomecian b/c of a bad experience with it when he was younger and the compazine didn't help at all.

He's suffering at least 2, sometimes 3, attacks a day and can't sleep hardly at all. He is also a heart patient who had two heart attacks within 4 weeks about 2 1/2 years ago. He's currently 38 yrs. old.

Thank you again for being here, it's a relief to finally find support for what we are going through!

Title: Re: Newbie Wife of Sufferer
Post by Bob_Johnson on Feb 17^th, 2008, 9:56am

Don't use just any neurologist which is handy. We have had too much bad experience with doc who lack skill, training, & interest in the complexities of headache.
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1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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Either of these books is excellent but, given your husband's history, I'd spring for the first one.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com. 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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The Rozen aritcle is excellent and will help you to monitor the new doc you locate to insure the latest treatments are Rx. A good tool to help you sort out the differences between treating migraine and cluster.

The Robbins site is one to explore as you have time. Muc good information. Also explore the buttons to the left, following the links. The OUCH site worth much of your time.

http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.plainboard.com/ch/chtherapy.pdf

Title: Re: Newbie Wife of Sufferer
Post by scarlet52698 on Feb 17^th, 2008, 10:02am

Thanks so much Bob! That was just the information I was looking for. I was hoping there might be some referral link on this site to someone in our area.

We don't have insurance and I don't want to waste our time with a Dr. that can't/won't help.

I'm so worried about the treatments because on top of everything my husband is a recovering addict (sober almost 12 years) and this pain is intense enough that he said heroin seemed like a good idea :'( He is a successful wonderful man so to hear this come out of his mouth about knocked me over but at the same time tells me that this pain is beyond comprehension!

Thanks again.

Title: Re: Newbie Wife of Sufferer
Post by barry_sword on Feb 17^th, 2008, 10:51am

Hi Scarlet and welcome. Sorry to hear about your husband but you have come to the right place for advice and support.

You need to find a good Neuro who understands what CH are. For most of us here o2 is a preferred abortive and talk to your Doc about what preventive you should try. Print off the o2 info to your left, 100% o2 at 15 lpm regulator with a non-rebreather mask.

I was very un-easy about trying o2, but when I got my script and tried it for the first time with a big hit coming on and stopped it in it's tracks within about 6 minutes I was a true believer from then on. I have it at home and in my car, never will let it out of my sight.

Hope you find a good doc and you both are with your new family now.

Barry :)