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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> CH has taken my life away
        
(Message started by: aplanoue on Nov 22^nd, 2004, 2:11am)

Title: CH has taken my life away
Post by aplanoue on Nov 22^nd, 2004, 2:11am

I'm really glad to have found this sight. I have been suffering from CH for almost a year now. I am a chronic clusterhead and don't go a day without headaches. I do have different levels of severity from day to day. I am starting my nightly one now. Almost every night at around 1:00 it wakes me out of sound sleep or gets worse because sometimes I can't even get to sleep. The only things my doctors have been giving me are one stupid anticonvulsive after another and now they gave me indocin on top which after 2 months of using it I'm ready do flush them down the toilet due to the side effects. >:( I am so glad to find people that understand and want to help others if I can. How does everyone hold down their jobs? I loose so much time and feel bad that I always leave the people I work with extra work because I have to leave or cant even go. I struggle to stay most of the time but as you all know It controls your moves and every aspect of your life. I just wish that they could find something to help all of us.

Title: Re: CH has taken my life away
Post by pubgirl on Nov 22^nd, 2004, 3:49am

aplanoue

I'm so sorry life is so tough for you at the moment, the beastie certainly likes to test all of us.

The only way you can live with this evil condition is to get a doctor who will give you the right treatments, without that we'd all be dead.
If your doctor won't give you the correct abortives and prevents, get rid of the doctor straight away and find a new one who will listen.

Wendy

Title: Re: CH has taken my life away
Post by Testy1 on Nov 22^nd, 2004, 4:20am

Aplanoue
Hang in there and welcome. I'm new myself but the folks around here have helped a lot just by being there. I know what you mean about work, I've certainly made extra work for people on many occasions. Holding down a job is tough, either the CH gets you at work or you're just too damn tired. Either way it's horrible. Everyone here understands.

All the best

Jack

Title: Re: CH has taken my life away
Post by don on Nov 22^nd, 2004, 7:33am

Quote:

How does everyone hold down their jobs?

By using the correct meds.

For me:

480 mg of verapamil SR per day
Prednisone taper
Imitrex injections to abort
Melatonin 3-6 mg per night

Title: Re: CH has taken my life away
Post by pubgirl on Nov 22^nd, 2004, 8:08am

and a lovely tank of Oxygen (or several) for the multiple hits

Wendy

Title: Re: CH has taken my life away
Post by nani on Nov 22^nd, 2004, 8:39am

Welcome and I'm sorry you're here. Anticonvulsants won't work by themselves. You need prevents like verapamil and abortives like Imitrex, also. We have to go on and continue with our lives because we can't let this beast win! Hang in there and I hope you find some relief.

Title: Re: CH has taken my life away
Post by becky8 on Nov 23^rd, 2004, 10:22am

I know how you feel, we all have been excatly where you are. I still have days like you feel now, helpless. Just like everyone said DON"T STOP TIL YOU GET THE RIGHT MEDS. It does make all the difference in coping with CH. And still you will have some rough times but just get on here and let loose. WE ALL know the feelings your feeling. What did help me other than these wonderful people here and of course the right meds was to stay pissed off at CH and tell myself everyday it wasn't going to take my life away from me. But remember you have to except it and deal with the bad ones but not let it take OVER!!!

Title: Resources
Post by Bob_Johnson on Nov 23^rd, 2004, 1:51pm

We have posted research here which shows that so many physicians are poorly trained/experienced in treating complex headache problems that it takes many people several years and several docs to find good treatment.

But, before you consider changing docs, it would be helpful if you would post all the meds & doses you have tried and the duration of use for each. That would give us a better sense of whether your docs are treating you in the most up to date way.

Educating yourself is critical. Suggest you get either the 2nd or 3rd title and dig around the material in OUCH. Also, look at the web site below.
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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....")

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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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: CH has taken my life away
Post by thebbz on Nov 24^th, 2004, 7:49pm

Hope this finds you better. Ditto the study. In order to control enough to work, one has to have a plan, timing , and the proper meds. That does not make it easy I know ,however many do it . I never leave home without an abortive. Went to work sometimes when I shouldn't have though. :o All the best
BB