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Topic: sufferer since 1967 (Read 319 times) |
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paddleball1
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sufferer since 1967
« on: Mar 17th, 2005, 1:20am » |
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I have been a cluster patient since 1967. I am an x-ray tech and have always been able to find someone to cover for me when I was unable to do my job. My attacks usually last for 6 to 8 weeks. This year, I've been suffering since August. I was using cafergot and overdosed on it in order to continue working. In December my doctor switched me from cafergot to the triptans and my attacks worsened. They became so severe that I was unable to function for days at a time. At this point I was put on Prednisone to break the cycle. This did help, but now I am getting chronic migrane attacks. I am now on verapmil and topomax.I have not worked since december. I am so depressed. I am afraid to go further than 15 minutes from my home. The topomax is causing confusion. Is anyone else suffering so so long a time?
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: sufferer since 1967
« Reply #1 on: Mar 17th, 2005, 2:27am » |
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I am sorry for your pain.... 
I've been chronic since 2003, CH sufferer since 2001.
Currently I'm on verapamil, 600mg/day and I take kudzu, too. I hope your combo works for you. Topomax didn't help me.
Best wishes,
Sandie
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Sophie
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Re: sufferer since 1967
« Reply #2 on: Mar 17th, 2005, 4:04am » |
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1967---that's a long time. Wondering if you have been doctoring all that time. My CH started around 1986 but I didn't get treated for it until 2 years ago. You know--it was sinus or stress! When I found this site I knew that CH was the affliction. I did the triptons, beta blockers, and finaly Topamax. The cycles got longer and more frequent. The Topamax did break the cycle but then came the depression and stupidity. I understand how you feel about not leaving home. I'm out of cycle now, but I am prepared for it anytime now. My hopes are based on the alternitive treatment. I also think that the Kudzu looks very promising. There is some new hopes out there and this is the place to find out about it. Don't mean to rattle on---but identified with your sitution and wanted to wish you the best. Hope this site helps you--it is a miricle for me. Okay I'm done. Sophie 
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WHERE ARE WE GOING?
AND WHY AM I IN THIS HANDBASKET?
Cluster Buster
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don
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28 years
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Bob_Johnson
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Re: sufferer since 1967
« Reply #4 on: Mar 17th, 2005, 7:20am » |
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This is the most current statement we have about treatments. Print it out, share with your doc, as a way to review your whole treatment rationale. Perhaps, the two of you will find a new approach.
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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Given your medical background, you will be able to use one of these books to advantage. I prefer the second one.
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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| « Last Edit: Mar 17th, 2005, 7:22am by Bob_Johnson » |
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Bob Johnson
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paddleball1
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Re: sufferer since 1967
« Reply #5 on: Mar 18th, 2005, 11:03pm » |
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I know that 240 mg of verapmil is low. I was originally on inderal and was recently switched over to the verapamil. I started with 180 and the doctor is bringing the dosage up slowly. I did take prednisone for 2 weeks and that really slowed the attacks down. Over the years, I have been to numerous doctors about my condition. As might have told you guys, I do work at a hospital. Also 2 of my 3 daughters suffer from headaches. One is a cluster patient and the other just gets migraines.
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kingsiren
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Re: sufferer since 1967
« Reply #6 on: Mar 19th, 2005, 12:06am » |
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I have had episodic CH's since 1991 but didn't get properly diagnosed until 2003. I went through sinus surgery which, although needed, did nothing to help me with the demons. Every time they come back they get worse and worse, more frequent and more intense. This episode is kiling me. My last episode in 2003 my primary put me on Nadolol which seemed to reduce the # of attacks but not the severity. I went to a Neuro who imediately swithed me to Inderal and put me on the 7 day Prednisone taper pack. It worked and I was pain free for almost 16 months. I went through some seriously stressful situations last month and the monster returned full force. My neuro gave me the Inderal for a week with no results, then the Prednisone for a week, no help. He started me on Topomax Wednesday and finally read up on O2 so I now have that to help me abort individual attacks (I hate the side effecs of Imitrex but of course will use it when I have to). I am exhausted from the Topo but it seems to be helping, so far only one medium severity attack since Wednesday so I'm praying....for me and you all as well.
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I have an ice pick being repeatedly stabbed through my eye, into my brain while 4160 Volts run through it as someone squeezes my eyeball. You get headaches buddy, I get the Beelzebub on Crystal Meth.
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