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Title: Greetings from another victim Post by DennisM1045 on Jun 8th, 2007, 2:07pm Hi! I’m Dennis and I’ve been suffering from CH for 12 years now. However I didn’t know I had CH until recently. I’ve been to doctors over the years and always got “well, it doesn’t sound like a migraine so it’s just a headache”. Just a headache? I don’t think so. My clusters come in cycles that are typically 6 weeks on and 3 weeks off give or take a few weeks. The beast comes to me in the night right after I go to sleep. Sometimes I can shake it off and go back to sleep, other times I wrestle with it all night. The pain is exclusively behind my right eye and feels like a searing, tearing spike through my eye. The eye reddens and the lid droops. I have nasal congestion on the same side. My vision will tunnel my sense of balance is gone. Bad ones last 3-5 hours with a defuse form of the headache lingering for 12 to 36 hours after the initial onset. I have to sit up and rock or pace and resist the urge to bang my head on something. Some will be bad enough to chase me out into the night air. It was a shortened cycle of acute pain after going to sleep for a few hours and defuse pain that lingered throughout the following day and lasted for 6 days. This one was the last straw. My kids don’t want to go near me. My poor wife doesn’t need someone else to take care of. Our love life doesn’t exist during a cluster and I’m almost never able to sleep in bed anyway. I’m tired, depressed, scared and incredibly frustrated. I can see where people begin to consider suicide. Just to be clear here, I’m not suicidal - just desperate :-/. I’m 46, male, carrying around an extra 20lbs and a Father of 10. So stress is a part of my normal life. Regular sleep cycles aren’t the norm even when the beast is in remission. Heredity has caught up with me and my blood pressure has become a problem in the last year and a half. I tried keeping it at bay with diet and exercise but that just didn’t do the trick. I’ve been practicing yoga for the last 9 months. The pranayama (breathing) practice and focus my practice brings really helps me manage the pain. Sometimes performing some simple asana during an attack will help me focus on something other than the pain. Gentle stretching, twisting and deep breathing exercises seem to help the most. In addition caffeine helps too; Excedrin migraine or a strong cup of coffee. About two months ago I met with my PCP and described my symptoms AGAIN. Seeing as she was looking to put me on some blood pressure meds anyway she prescribed Verapamil. We started at 180mg. Six weeks later I was back because my BP hadn’t really improved and I had just gone through 6 days of hell. She upped my prescription for Verapamil to 260mg and, most importantly, referred me to a Neurologist. That meeting happened yesterday. Finally I feel like I’m dealing with someone that understands and has treated other patients with CH. He prescribed O2, which was delivered yesterday, and an Imetrix emergency kit along with Neurontin 300mg 3x/day. After I write this I’m walking into the next room to cut the elastic from the face mask. Great tip on that in the O2 info section BTW. I had an EKG yesterday to make sure my ticker is in good order before I shoot my leg full of Imetrix and kill myself. Of course that would stop the CH wouldn’t it ;) I have an MRI scheduled for tomorrow to rule out other causes. I took my 1st dose of Neurontin last night. It kicked my a$$. When I woke up this morning I had a defuse headache like I slept through an episode. I was also dizzy and nauseous. I didn’t bother trying the O2 and just gutted it out with a cup of coffee. I was ok by noon. I hope I adjust to this med quickly. I also hope it works. The Dr is ramping up as follows; one at night for 5 days adding one in the morning for 5 more days and then adding one more at noon after that for a total of 900mg/day. For the first time in 12 years I finally feel like I’m doing something. That alone is a help. Finding this community on-line is another boost for me. My wife is sick of the headaches. I can’t blame her. We’re both flat out normally anyway. Me falling apart is the last thing she needs. It takes all our combined efforts to run things around here in the best of times. This board will provide me with another source of support. It’s good to know I’m not alone. Anyway, thanks for being there everyone. -Dennis- |
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Title: Re: Greetings from another victim Post by michael on Jun 8th, 2007, 2:19pm Welcome to the family Dennis. Sorry you had to be here. Mike |
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Title: Re: Greetings from another victim Post by Sandy_C on Jun 8th, 2007, 3:13pm Dennis, welcome. This is your second family, of hundreds. Can you handle a few more on top of your 10 children? ;;D I'm so glad to read that you are finally working with a doctor who seems to have some knowledge about CH, and that what she's doing for you is helping. Please read everything on these boards, especially the information on the buttons to your left - Imitrex tip! (if you haven't already), and please keep us posted on your progress. Again, welcome to the family. Sandy |
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Title: Re: Greetings from another victim Post by Guiseppi on Jun 8th, 2007, 4:00pm I'm the middle child of 14....maybe a causative factor there...hmmm ;;D I'm 47 so we're about the same age. I've had them since my late teens and the oxygen is still my number one abortive. When on cycle the tank sits by my bed at night, sits in the passenger seat in my car during the day! My security blanket. The verapamil is still at a low dose by CH standards. Download some of the info from the board and take it to your neuro, might help their comfort level with what they prescribe. I use the imtrex as a last resort abortive but hate how it makes me feel during the hit and I don't like the after effect i call the imitrex hangover! Welcome to the board, your new second home. I hope you find some relief soon. Guiseppi |
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Title: Re: Greetings from another victim Post by Bob_Johnson on Jun 8th, 2007, 4:22pm Now the work begins! Start learning: explore buttons on left. And, MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 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. =========== http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter. ========================================================================= 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.brightok.net/~mnjday/chtherapy.pdf |
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