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Hello There!!! (Read 1260 times)
lexie
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Hello There!!!
Oct 6th, 2009 at 6:33pm
 
Hi there everyone!
I stumbled on this site as my best friend suffers really badly from cluster headaches and I adore him so as you can imagine it tears me apart to see him in pain as much as he is. Is there anything AT ALL I can do or is it just a case of watching him go through his terrible illness?
I just feel so bad for him because in all fairness I am not the easiest person to be around but he just struggles through without complaining but I can see in his eyes just how much he goes through and I feel so helpless.
This site is excellent though and I am learning SO much about cluster headaches - I have to be honest and admit that I didn't truly realise how bad these things were but now I have read some other descriptions I can see that he does feel like bashing his head on a wall - today he said he was in the bath thinking that the pain is so bad that  it would just be easier to end it all and that is awful and as I love him so much I really want to help! Cry
I really do feel for all you sufferers out there - it certainly puts my period duvet day to shame! Smiley
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Skyhawk5
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Re: Hello There!!!
Reply #1 - Oct 6th, 2009 at 9:42pm
 
Lexie,

Welcome to CH.com. You will find lots of info and support here. One very difficult thing is being a supporter for one of us. And for us, watching our loved ones suffer trying to help is just awful.

Read everything you can here to find the best treatments known. Tell us more about what he is now taking etc.

With proper treaments the feelings of desparation can be lessened and sometimes eliminated. But there is no cure yet.

Oxygen and Imitrex injections are the top abortives, but must be used properly. Verapamil, Lithium, Topimax, are common preventatives.

Best of luck, Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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TarHeel-blues
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Re: Hello There!!!
Reply #2 - Oct 6th, 2009 at 10:40pm
 
welcome to the site lexie,,this placed CHANGED my life and im willing to bet it can do the same for your friend and even you as well,,your friend is very lucky to have you as a "best friend"..after 10 years i still have so called friends who think its just something i use to lay out of work..go figure,,i wouldnt know how to act if i had a friend that was as dedicated as you are,,ask all the questions you can and read all the info you can stand ,,you wont be sorry


jason
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Charlie
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Re: Hello There!!!
Reply #3 - Oct 6th, 2009 at 11:10pm
 
Hi and welcome aboard and I'm sorry you and your friend have to deal with this horror. You'll find very good information here and support.

Something your friend might want to try....the price is right anyway:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from my neurologist:
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. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. 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. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

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.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head 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.
I hope this technique is helpful and I wish you the best of luck

Charlie      
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bejeeber
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Re: Hello There!!!
Reply #4 - Oct 9th, 2009 at 11:04pm
 
Hey there Lexie, enough of the needless torment for your cluster pal.

If he hasn't been here, then he needs to be here yesterday figuring out the best way to keep these CH attacks at bay - there are many very effective methods, everything from meds to non meds, for fighting back and fighting back hard against this beast (and very often WINNING).

I admire your empathy for your good friend BTW.  Smiley

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Aussie6330
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Re: Hello There!!!
Reply #5 - Oct 10th, 2009 at 3:11am
 
Hi Lexie,
First of all it's nice to see someone that cares so much.  As far as advise as to "what to do"?  All I can relate is what my wife does for me, although now that I have the O2 it occurs very infrequently now. 
When I suffer a CH of Kip 8 and above, my lady runs back and forth providing me with ice packs to help numb my head.  While I sit there rocking back and forth bashing my fist into my skull,......she sits there right beside me rubing my back and telling me, "its been 10 min now.....its been 15 min now....at least I know A) she cares  and B) there is only a finite time left to go.  As I said.....this rarely occurs now with the O2 on hand so I hope your friend gets hooked up soon.  In the meantime.......Keep up the good work, it really does help.   Cry

Regards

Archie
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Guiseppi
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Re: Hello There!!!
Reply #6 - Oct 10th, 2009 at 10:55am
 
Where'd you go Lexie????? I wanted to thank you for being a supporter. My wife found this board for me many years ago and saved my sanity. Drag your significant other in here and let us help them. You should also check out the supporters board....where all the people we love hang out and complain about what pains in the butt we can be! Grin Hope to see you soon.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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