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Topic: new here but a veteran (Read 375 times) |
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rossimft
New Board Newbie
Doggonit! These CHs are making my eyes pop out!!!
 
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new here but a veteran
« on: Sep 17th, 2005, 12:44am » |
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Hello all. I have just recently discovered this support group and have a great sense of relief knowing you all are out there. I am a 36 year old woman who has been suffering from CH since age 17. They are episodic occuring about every 18 months and are lasting about 6 weeks now. With each episode they seem to last a week longer. So I guess at some point they will just never go away!! I have seen dozens of neuros and tried all types of treatment, to no avail. I have been getting slight relief (better than nothing) from O2, lots of Vicodin, and Imitrex injections (provided I have no more than 4 headaches per month per orders of Blue Cross.) When that is exhausted I'm left with the Imitrex tabs that are only good for the medicine hangover I'm left with afterward. I think the biggest thing for me now, in the throws of my 6th week, is the emotional strain. I am just so drained that I can't imagine how I will deal with the next attack, but I do. (don't worry, I am a psychologist and am [I would like to think] mentally stable enough to not do anything stupid or regretful.) Additionally, my husband is my savior. He has so much compassion for me and is always there for me even if it means dropping what he's doing at work to pick me up and bring me home. God, I love him!! Well, I have dumped enough for now, and I will be around from now on. Thanks for listening!!
Sheri 
One more thing, why is there no chat room here?
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Sheri
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burnt-toast
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Re: new here but a veteran
« Reply #1 on: Sep 17th, 2005, 5:36am » |
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You've landed in the right place. Just not good news that you're here. I don't know how much help the Vicodin is really providing - be careful there.
There are a variety of preventatives that provide some with relief. I find some relief in a mix of Lithium Carbonate, Verapamil and Melatonin. Take time to read the boards and discuss the options you find with your neuro. If you don't have personal reservations don't overlook the alternative treatments either.
No question this nightmare is an emotional and physical strain. Good support is important for those of us that must deal with it. It's a condition that just can't be explained to someone that hasn't experienced it.
Best Wishes,
Tom
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| « Last Edit: Sep 17th, 2005, 5:37am by burnt-toast » |
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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Bob_Johnson
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Re: new here but a veteran
« Reply #2 on: Sep 17th, 2005, 7:05am » |
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HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.
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...."
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Bob Johnson
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Jonny
CH.com Alumnus
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Give me a shovel Ill dig my own grave!
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Re: new here but a veteran
« Reply #3 on: Sep 17th, 2005, 8:29am » |
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Chat room
http://www.clusterheadaches.com/chat/
Its mostly used at night 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Sean_C
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Re: new here but a veteran
« Reply #4 on: Sep 17th, 2005, 8:30am » |
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Welcome Sheri, there's lots of helpful information here for you to read, its important to know more about your condition than your doc
I wouldn't encourage the Vicodin, in most cases you'll suffer rebound headaches which might be part of your extended cycle. Pain killers don't do us any justice they just add to the misery.
Hope you get some PF time soon
Cheers
Sean........................................
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rossimft
New Board Newbie
Doggonit! These CHs are making my eyes pop out!!!
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Posts: 17
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Re: new here but a veteran
« Reply #5 on: Sep 17th, 2005, 3:20pm » |
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Thanks for the heads up with the Vicodin. I know it is not useful for alleviating the pain, but when I am desperate, I am open to ANYTHING. Vicodin does the job of knocking me out so I don't have to deal with it,and as I'm sure you all know the Imitrex doesn't do much at all.. I did not know it could trigger rebound headaches. I have been looking around this site and I am very impressed with the dedication all the members have to dealing with this burden. I am learning a lot from everyone. I am most impressed that this group is serious and not just a bunch of nonsense. For my next visit to the neuro, I am certainly going to be armed with all of the valuable info I am gathering from this site.
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Sheri
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Bob_Johnson
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Re: new here but a veteran
« Reply #6 on: Sep 18th, 2005, 10:04am » |
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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. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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