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hello from bermuda (Read 2200 times)
catscratchfever
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hello from bermuda
Sep 19th, 2008 at 4:46pm
 
hello all,first time for me on a site like this.My name is bill.Ive been suffering with clusters for 18 years now and its been hell.Im a week and a half into this episode and I already feel like dying,these things come and go when ever they please,they usually last for 6-8 weeks averaging 5 a day like clock work.I can tell the time by these fu#$%ng things. I dont know anyone who suffers from these things.Im so glad ive found this site.reading some of the posts brought me to tears,im not the only one with this ,thankyou for letting me join this forum
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Jonny
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Re: hello from bermuda
Reply #1 - Sep 19th, 2008 at 5:06pm
 
catscratchfever wrote on Sep 19th, 2008 at 4:46pm:
I dont know anyone who suffers from these things.


Well, you just met a whole shit load of us, Bill! Wink

Welcome home!  Smiley
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Jeannie
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Re: hello from bermuda
Reply #2 - Sep 19th, 2008 at 5:16pm
 
Hi, Bill!  Welcome!  Glad you found us!   Smiley

Jeannie
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"It's all a grand illusion when you think you're in control." ~ Kenny Chesney
 
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Bob Johnson
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Re: hello from bermuda
Reply #3 - Sep 19th, 2008 at 9:06pm
 
I assume that resources will not have changed much since I was at Kindley 50-years ago, ergo, hope you have found a doctor who is willing to work with you on treatment.

IF you have such a doc, suggest you print out and share the Rozen article. Outlines the current treatments. The first book, while expensive has special merit to share with a doc since the author is one of the better doc in the states.

If you have specific questions, get back. Good experience in the folks here. Might start exploring the buttons (left).
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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. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 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.




 

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Bob Johnson
 
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Guiseppi
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Re: hello from bermuda
Reply #4 - Sep 19th, 2008 at 9:34pm
 
Bob has given you a treasure trove of information, knowledge is your best weapon in the fight against the beast. Educate yourself, and work WITH your doctor to figure out a management program. Sitting in front of your doctor and saying "fix me" is setting yourself up for a boat load of pain.

Welcome home, you're definitely not alone anymore.

Guiseppi
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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coach_bill
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Re: hello from bermuda
Reply #5 - Sep 20th, 2008 at 12:18pm
 
welcome bill, from a bill. yes there alot of suffers out here as well, you are not the only one. But none of us are the same we all have different triggers and such, but we all know the same things!! how often are your clusters, every year?? every 2?? thanks for joining and stay active, it was great when i talked on the phone with my 1st cluster brother, it was even better when i met my 1st cluster suffer as well, 2 hours went by like 2 minutes and we have talked many times since then. remember its a big small world out there. Coach Bill
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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maalstroom
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Re: hello from bermuda
Reply #6 - Sep 20th, 2008 at 6:10pm
 
Hi Bill, and be welcome to our funny little family.

As always, the great Bob provides you with some quintessential information. Absorb it. Really.

Nothing much intelligent to say further, I'll leave that up to the big guns here!

Pascal.
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...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.
 
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DennisM1045
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Re: hello from bermuda
Reply #7 - Sep 21st, 2008 at 12:29pm
 
Welcome Bill!  I'm happy you found us.  I'm sorry you had to. 

As you've seen, there is a lot of experience here on the board with hundreds of members that suffer just like you do.

Why don't you tell us something about what you're doing meds wise.  Maybe we can make your situation a bit better  Cool

Wishing you a short cycle and many PFDAN!!!

-Dennis-
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
dennism1045 dennism1045 524417261 DennisM1045 DennisM1045  
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Charlie
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Re: hello from bermuda
Reply #8 - Sep 21st, 2008 at 4:13pm
 
Welcome to the madhouse Bill. I know the feeling when you meet others that have to deal with this horror. No one not afflicted with this has no idea.

Here is something that worked for me a good percentage of the time. Good luck and stick around.

Charlie


                                         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      
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There is nothing more satisfying than being shot at without result---Winston Churchill
135447360 mondocharlie mondocharlie  
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barry_sword
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Re: hello from bermuda
Reply #9 - Sep 22nd, 2008 at 6:33pm
 
Hi and welcome to your new home, you are not alone anymore. You are amongst others who share your pain and understand.

My first line of defense is 100% o2 at 15 lpm with a non-rebreather mask, no out side air.

As a prevent I take Verapamil which is working ok for me, so far, under the care of my neuro.. Just fine tuning it to suit me, as I am very active physically so I keep a close eye on my BP, heart rate, ect.

Welcome aboard.

  Barry Smiley
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QUIT SMOKING SEPT. 03 2005
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