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doug149
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First Post Need Advice
« on: Mar 16th, 2006, 7:38am » |
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Hello all
This is my first post and need advise I have been a cluster suffer for about 35 years since I was 15. For years it went miss diagnosed and I have been treated from Coast to Coast.
At one point when I was about 17 or 18 I saw a very prominent headache specialist in New York and after about a 2 week hospital stay and morphine treatments he told me I would probably grow out of them when I was 40. Not somethig you wanted to here at that young age.
In the following decades I think with the exception of surgery I have tried it all. Currently and for the last 7 or so years I have been using Oxygen Therapy as well as DHE injections.
My specific question is this I run a company and it becomes more and more difficult and at times due to travel necessary dangerious . Has any one every applied for disability for this condition. I am now first considering this as I am not sure how much longer I really can function with this pain. If you have any suggestions about how I would do this or if it is a total waste of time I would greatly appreciate it.
My headache periods have lasted from any where from 3 months to 1 1/12 years and yes I am currently in a cluster.
Many Thanks in advance to any advise you may have to pass along This pain has affected 2/3 of my life in so many ways as I am sure you all know to well. I feel I have tried it all yet the results are small and few. Although I never thought of Disability I now need to consider this alternative as I feel it is only a matter of time and age before I cannot function at all in the business world.
My email will follow
Wayne@sevave.com
Best Regards
Doug
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Bob_Johnson
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Re: First Post Need Advice
« Reply #1 on: Mar 16th, 2006, 8:27am » |
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You didn't mention your current doctor situation: Clearly, in the last few years we have seen some dramatic improvement in the range of treatments.
Start here to review current thinking.
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
Another excellent source: www.headachedrugs.com
HEADACHE 2006 IS HERE!
HELP SUPPORT THIS WEBSITE, AND RECEIVE: "HEADACHE 2006" hot off the press!!
This 64-page booklet has cutting edge ideas and opinions from Dr. Robbins about the meds and non-med therapies for migraine, chronic daily, and cluster headache. There is also a section on headache in children and adolescents.
Major revisions have been done, including the latest on meds and therapies for refractory, difficult to treat headaches including options for when nothing is working. There are also new sections on Bipolar, ADD, Insomnia, and Personality disorders, as well as Biofeedback. Click here for the complete table of contents. (Requires: Adobe Acrobat Reader - A free program)
Headache 2006 is the latest edition, based upon Dr. Robbins' 2 bestselling books. You will receive this latest work by Dr. Robbins and also help to support this non-commercial website, for only $16.95 (includes shipping).
To order, call 847 480-9510 (Mon. thru Fri. 9 to 4 CST) and order with a credit card (Visa, MasterCard, and Discover accepted), or send check (or Visa info) for $16.95 to:
Robbins Headache Clinic
1535 Lake Cook Rd.,
Suite 506
Northbrook, Ill.60062
You can also fax your order with your credit card information to: 847 480-9044.
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Bob Johnson
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Re: First Post Need Advice
« Reply #2 on: Mar 16th, 2006, 9:36am » |
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Welcome to the asylum, Doug. You don't have to be crazy to be here, but it helps. LOL
A prominent doctor said you grow out of them by 40, eh? His prominence didn't know much about clusters. I didn't have my first hit until I was 40.
Cluster headache therapy is a two part thing. You need your sword (abortive) to kill the beast and your shield (preventative) to keep him from beating you up in the process. If all you are doing is O2 and DHE, then you have your sword, but no shield. You need a preventative therapy strategy to keep the attacks at bay so you can lead a "normal?" life. So what medicinal, alternative and other treatments have you tried?
RE: Disability...If you are Episodic, you can pretty much forget any chance of disability. Even for a Chronic with multiple attacks per day, disability is a very hard thing to get. I'm not saying it is impossible, just not to get your hopes up. It's a very slow process. The Social Security Administration does drag it out for as long as they can (sometimes for years), whenever they can in hopes you'll just give up and go back to work.
Anyways... Again, welcome. You are among people who definitely understand what you have and will go through.
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MJ
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Re: First Post Need Advice
« Reply #3 on: Mar 16th, 2006, 10:00am » |
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Hi Doug
You and I have followed similar paths.
I too run a business, have been through the full gamut of medications and treatments and never other than huge doses of prednisone gotten relief from CH.
I went 10 years plus with no meds at all simply because they made things worse and downgraded my functioning and warped thoughts.
6 months ago I finally tried a treatment consisting of RCseeds a completely natural form of LSA. It took some trial and error to get it right but I can now say it was the best treatment ever. Side effects were nil for me and the ability to function was unimpaired afterwards.
You can read about LSA at clusterbusters.com.
I reccomend this treatment highly after you read all the info available.
It sounds like it but this is not a sales pitch, just another method that can not only abort a hit but a complete cycle.
Some here have taken disability but the above treatment may help to avoid it.
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MJ
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marlinsfan
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Re: First Post Need Advice
« Reply #4 on: Mar 16th, 2006, 5:56pm » |
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The Americans with Disabilities Act (ADA) was written may years ago before cluster headaches were well known (not that they are now!), so it does not mention CH per se, but it does cover people with "severe Migraines." You could get a good lawyer and make the case for CH for yourself.
I travel a lot for work too, and I call ahead to my destination and find an oxygegn company to deliver a few E-tanks to my hotel room. I travel with my mask and regulator, like "normal" people travel with their extra pair of shoes 
Welcome, Doug.
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