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        New Message Board Archives >> Jan-Mar 2003 >> Introduction
        
(Message started by: Steven on Mar 11^th, 2003, 3:00pm)

Title: Introduction
Post by Steven on Mar 11^th, 2003, 3:00pm

Hi, I was diagnosed with cluster headaches when I was 16, and I'm 19 now. Before I was diagnosed, I was getting incredibly severe headaches, which I had thought were migraines (I had been suffering from migraines since about 14), but more severe. I noticed I would start crying and I would hit myself in the head, but they were survivable at first. Then, I get one that just knocked me to the floor, and I think I must have beat myself unconscious because I blacked out for a while. My parents finally decided to take me to the hospital. That's when I was diagnosed.

I've only had about one episode a year since then, usually lasting about six weeks. My last episode was my worst, with the most attacks, and caused me to miss a lot of school because I was in and out of the hospital for a whole week.

I don't like describing specifically how it feels, because I'm uncomfortable remembering pain, but I wanted to introduce myself here anywhere. I had been watching the site for a little bit before deciding to show up, and I hope this turns out to be a good experience.

Title: Re: Introduction
Post by jonny on Mar 11^th, 2003, 3:07pm

Hi Steven,

What the Doc's give you for meds, abortives, prevenitives and did you get some 02?

Welcome
.............................jonny

Title: Re: Introduction
Post by Roxy on Mar 11^th, 2003, 3:16pm

Hi Steven and welcome. Sorry you had to find us, but glad you did. Lots of info and good people on this board. Just read everything you can (buttons to the left), go join OUCH, and read everything on that site.

Are you using 02? What other meds?

PFDAN,
Tracey

Title: Re: Introduction
Post by Steven on Mar 11^th, 2003, 3:19pm

I've been trying to get some Oxygen ever since my last emergency room trip (they put me on it during my stay, and it felt so good), but my normal doctor still won't give it to me. I say oxygen, he says "Imitrex?"

So, all I've been able to get is Imitrex, first the pills and now a nasal spray. My current doctor isn't the one that diagnosed me, and I don't think he knows very much about cluster headaches. First time I met the new doctor he told me he never heard of them, and then treated me like I only had migraines (and he kept calling them migraines in the visit). All he gave me was Imitrex, and even then it was only 6 doses of the nasal spray, and he refused to give me more.

I'm going to try and see a new doctor soon about getting a prescription for O2 (I called a supplier, they said I need a prescription :'( ).

Title: Re: Introduction
Post by jonny on Mar 11^th, 2003, 3:33pm

on 03/11/03 at 15:19:04, Steven wrote:

I called a supplier, they said I need a prescription

E-mail me if they refuse you 02, I can work around that.

Have done it for many people here.

....................................jonny

Title: Re: Introduction
Post by K. on Mar 11^th, 2003, 5:59pm

Welcome Steven. Glad you found us. You will find a lot of information and support here. Keep trying to get that O2. I've had better luck with neurologists then I have with family docs with getting the meds I need. The O2 has to be used a certain way for it to work so if you need information...feel free to ask. There are tons of great people on here who are experts on the subject.

Karen

Title: Re: Introduction
Post by 9erfan on Mar 11^th, 2003, 6:44pm

Hi Steven,

Welcome to the family. Sorry to hear that you are suffering from this crap too.
I don't understand Dr's who don't give O2....no side effects, no dependency...what's the problem? Find a good neurologist. Call around until you find one who is familiar with giving o2.
Hope things get better for you.

Virginia

Title: Re: Introduction
Post by cootie on Mar 11^th, 2003, 7:14pm

Hi Steven......print some of the info out on this site and take with you to yer next docs visit......it mite help......good luck and hope ya get yer O2 ya need......Pam-Coots-that-hopein-ya-sum-good

Title: Re: Introduction
Post by Charlie on Mar 11^th, 2003, 9:32pm

Welcome aboard and pay attention to some of the ideas here. These clowns know what they're talking about. So did this guy, as odd as it sounds:

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

Title: Re: Introduction
Post by Mr.Happy on Mar 12^th, 2003, 1:05pm

Steven,

You're not the first person having trouble obtaining a script for O₂, nor will you be the last. If a physician needs more info to be convinced, here you go:
http://www.drfeller.com/ch/o2ch.html

Should you be unable to obtain oxygen medically, drop that note to Jonnie.

If anybody has other info from "reputable" sources that might help influence a Doc, give me a yell, and they'll be added.

References, Please..............
RJ

Title: Re: Introduction
Post by 2late on Mar 12^th, 2003, 8:24pm

welcome aboard steven, 02 is awesome! good luck to ya! .........Jack

Title: Re: Introduction
Post by DeansGirl on Mar 12^th, 2003, 10:20pm

on 03/12/03 at 13:05:40, Mr.Happy wrote:

I love you Mr.Happy!!!! ;D I just spent the last hour at the URL you listed and have found so much GREAT information!!! THANK YOU THANK YOU!

*sigh* I'm starting to get a feel for these medical terms...understanding them, the meds, the actions and reactions....you guys are all so wonderful to stick around and share this information over and over again with us newbies.

Any advice on how to get a GP without lots of specialized education on CH to work with you on getting the scripts you want? Does it help to take some of these medical articles along to back up our request?

DeansGirl