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        New Message Board Archives >> Jul-Sep 2003 >> New to the website
        
(Message started by: Gofishgriff on Jul 9^th, 2003, 12:31pm)

Title: New to the website
Post by Gofishgriff on Jul 9^th, 2003, 12:31pm

Hi there,

My name is Andy and I've had CH's for about 12 years now. I started a new cycle at the end of last month and it had been 1 1/2 years since the last one. So, I decided to do a little research on Clusters and came across this site.

Like the other 'newbie' posts, I too am in awe that there are people out there that really inderstand what it is I go through. I love the idea of naming some of the things associated with CH. The demon showed up last night around 9:30 and I tried the water treatment. I must say it did seem to ease the pain because I was able to lay in bed somewhat. Not the normal dance for me. My dance usually has me walking out to the kitchen to roll my head around on the cool refridgerator door. I have the shadows today and I'm just waiting for the demon to show up again, I just hope it's in the early evening so I can get some sleep.

Not wanting to get too lengthy here with my first post, but I was diagnosed around 3 years ago. I went through the 'worrying about a brain tumor' thing. Especially when they did the MRI, after the CAT Scan.

I thought I was alone out there with these demons. It's sad there are so many of us, but it is also nice that someone else knows... My wife tries so hard to understand, and I try so hard to describe what it is I go through, it gets frustrating.

Thanks for letting me participate and I hope I can offer words or comfort to others in the days, weeks, months to come.

Best regards,

Andy

Title: Re: New to the website
Post by catlind on Jul 9^th, 2003, 1:21pm

Welcome to the folds Andy, sorry you had cause to find us. You will find a wealth of information in the black squiggles of these pages.

What treatments have you used? Verapamil as a preventative, Imitrex as an abortive and O2 for abortive are the most common and most successful of conventional treatments.

Grab an oar and help row this ship to a cure :)

Cat

Title: Re: New to the website
Post by Jayne on Jul 9^th, 2003, 3:50pm

Sorry to have to welcome you to our club of pain. :'(
Hate to hear your in the same boat as us Andy.
definatley think about the meds that Cat listed above, they should help you as they have many others here.
Jayne

Title: Re: New to the website
Post by ShariRae on Jul 9^th, 2003, 4:18pm

So sorry you had to find us.. but welcome aboard!! There is a wealth of information & support here..stick around, ask questions & read,read,read. You may also want to direct your wife to the supporters corner..it may help her to understand by talking to others that are supporters. Welcome!!
Huggs
Shari

Title: Re: New to the website
Post by andy on Jul 9^th, 2003, 4:59pm

Andy, welcome aboard. There are tons of good info on this site as well as the OUCH site (yellow button on left of this page) Stick around and do some research. I have been med free for a long time except imitrex injections for the real headbangers. Oxygen works great for me too if i get to it soon enough. I am PF for now, my cycle ended a couple months ago. Here is a link to the oxygen page. http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm From 1 andy to another, PFDAN andy

Title: Re: New to the website
Post by Roxy on Jul 9^th, 2003, 5:16pm

Welcome Andy, sorry you have these damn things. Hang around, read, join in.........we don't bite unless asked too......... ;D

Title: Re: New to the website
Post by echo on Jul 9^th, 2003, 5:24pm

Welcome aboard Andy. Sorry to read that another person has needed to search us out. Glad you found us.

Title: Re: New to the website
Post by Edna on Jul 9^th, 2003, 10:32pm

Glad to know you've found us Andy. Hope you can find here what most us us have. From your post........"I can offer words or comfort to others in the days, weeks, months to come."...........you're on the right track.

Use the awesome knowledge others have left for us and keep us posted on your progress. We care.

wishing you pf moments,
EDNA

Title: WRe: New to the website
Post by nancyc on Jul 9^th, 2003, 10:50pm

Welcome, bro..sorry to hear you suffer from this damn thing...but know you have lots of family here for you..smiles,nancyc

Title: Re: New to the website
Post by Charlie on Jul 10^th, 2003, 3:50am

Welcome to our little madhouse, Andy.

It's a bigger club than we'd like it to be but there are some good ideas. This being the one that worked for me.

Dr. Wright's Circulatory Technique

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Keep in touch and tell us how you're doing.

Charlie

Title: Re: New to the website
Post by Gofishgriff on Jul 10^th, 2003, 12:34pm

Thanks for the welcome aboard. I've been looking around the site, reading all the good info and can say I'm pretty fortunate in fighting the beast.

I can say I've never had a true 10 on the Kip Scale. I have had a couple 9's with the major pain, but never a trip to the ER. I usually top out at 8. The current cycle, as with previous ones, only give me one headache a day on average. I did have two in one day about a week ago, but I've also had a couple days recently without any. As a matter of fact, the past two days have been beast-free, however I've had shadows all day long.

You guys know about the shadows, I get that little 'ping' behind the right temple and I wonder if it's about to start...

With the 9's I've had, I truly feel for anyone who gets 10s. Well, thanks again for the welcome and I'm off to join in on some other threads...

Glad to meet you all and glad to help row this boat. :)

Gofishgriff

Title: Re: New to the website
Post by justagirl on Jul 10^th, 2003, 12:41pm

I also just stumbled across this site today. I have been suffering from ch for 6 years. I feel incredibly relieved to find this site and hope to learn many things from it.

Title: Re: New to the website
Post by minnie on Jul 10^th, 2003, 1:04pm

Andy,
Sorry to hear your dancing with the beast :'(,but now you have people in the same boat who understand .I am a supporter for my husband Billy J .I know a little about what your wife is going through .as Sharirae said please have her check out this site she'll get alot out of here and the supporters board.That way you'll both get info you need to help you while your in cycle.welcome to the family.wishing everyone pfdan.
Minnie

Title: Re: New to the website
Post by Roxy on Jul 10^th, 2003, 6:31pm

Welcome justagirl,

Why don't you start a new thread and tell us a little about yourself? Nice to see someone else from Texas, I just hate that you have to be here.

PFDAN,
Tracey