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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › New to site,feel twice my age

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New to site,feel twice my age (Read 1058 times)

Iddy

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New to site,feel twice my age
Dec 1^st, 2008 at 3:55am

Hi,just found the site.I started getting CH's in the fall of 05.A doctors kid"passed away"I did not seek help for two months..My life as I knew it is no longer.I can not believe there is such an affliction or curse out there like this.
I suffer on the right side.Wondering if anyone out there gets the felling I do of the entire muscle structure on the right side tightens up like the muscles are an inch or two to short?

Walk in Peace

"If you can, help others, if you cannot do that, at least do not harm them." Dalai Lama

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Guiseppi

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Re: New to site,feel twice my age
Reply #1 - Dec 1^st, 2008 at 11:40am

I contemplated cutting the muscle at the base of my skull, on the same side as my CH. I would rub it as the CH started and it just felt like if I severed it, it would stop pulling the scalp and the pain would stop! Thankfully I never actually tried the home surgery!

Now tell us a bit about yourself, what you use as a preventative med if any, what you use when an attack starts etc. There are many medications out there, maybe we can point you towards something you have not tried yet.

Glad you found us, welcome to your new second home.

Guiseppi

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

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RichardN

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Re: New to site,feel twice my age
Reply #2 - Dec 1^st, 2008 at 3:59pm

Hi Iddy and Welcome to Clusterville

I too was "at the end of my rope" when I came here (2/02). This place gave me my life back. I no longer fear the beast at the level I once did.

For me it was Verapamil (preventive) and 02 (abortive) that did the trick and finally gave me some control over this beast of ours

In your other post, you mentioned Naproxen and Flexoril. Others here familiar with both will check in as to their effectiveness. You also mentioned Imitrex . . . . pill, nasal spray, or injectible? I can't use Imitrex at all due to some artery blockage and high cholesterol . . . so 02 is my only abortive . . . can kill him in minutes if used early-on in the attack . . . works for 70% of us to abort. You need to read and copy the 02 info available here and take to your doc for a script. Requires proper flow-rate and mask (15-25 lpm regulator and non-rebreather mask)

There are many preventatives out there and some are used in combination with others to help keep these monsters at bay . . . you're in the right place to find out about all of them. One of my favorite motto's on this board is, "Nothing works for everyone, but SOMETHING works for everyone". . . . and here you have a very good chance of finding the "something" that works for you.

Read, read, read . . . and ask any questions you might have. The answers you get here come from people who truly understand your pain and how (uncontrolled) devastating it can be.

Glad you found us,

Be Safe, PFDANs

Richard

I can live with the beast as long as I don't have to "dance" with the bastard.

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gyps

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Re: New to site,feel twice my age
Reply #3 - Dec 2^nd, 2008 at 6:35am

a patient of ours had a type surgery, oxygen chamber treatments, etc..finally he went back to his specialist and was put on allergy shots weekly and topamax...that gave him a great deal of time between his headaches...
He stopped his allergy shots several months ago and now is back in a cycle after cycle with the imitrex not helping. Not sure on home oxygen but will find out. His wife said he was going to have to start back on his allergy shots again since together with the topamax that gave him relief.

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-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: New to site,feel twice my age Reply #4 - Dec 2^nd, 2008 at 5:33pm i'm a right sider myself. the right side of my face wpuld twitch. people tell me this starts before an attack buti never notice. at the peak of an attack my right hand and my legs get shakey. i guess that a side effect of being terrified and in pain. glad your here. hope you deside to stick around a while
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Iddy

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Re: New to site,feel twice my age
Reply #5 - Dec 3^rd, 2008 at 1:03pm

Thanks Guiseppi,I Guiseppi wrote on Dec 1^st, 2008 at 11:40am:

Walk in Peace

"If you can, help others, if you cannot do that, at least do not harm them." Dalai Lama

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