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        New Message Board Archives >> Jan-Mar 2003 >> new to the site, not new to the pain
        
(Message started by: hempgrl on Feb 8^th, 2003, 2:26pm)

Title: new to the site, not new to the pain
Post by hempgrl on Feb 8^th, 2003, 2:26pm

hi, i just found this site today determined to figure out what the hell is wrong w/ me....i been experiencing clusters or what i believe them to be ,i cannot find a dr that doesnt look at me like i have 2 heads...my poor husband is going through alot not being able to figure out a way to help...any suggestions would be grateful

Title: Re: new to the site, not new to the pain
Post by jonny on Feb 8^th, 2003, 2:33pm

Try the "cluster quiz" button on the left and let us know how you made out.

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

Title: Re: new to the site, not new to the pain
Post by brain_cramps on Feb 8^th, 2003, 2:37pm

hi hempgrl

glad you found this place but sorry you had to look.

There is SO much information here. Just sit back and READ, READ, READ.

As far as '2 heads', YOU might have to educate your doc.

So...READ, READ, READ.

hoping and praying for a break in OUR pain,
grant

Title: Re: new to the site, not new to the pain
Post by hempgrl on Feb 8^th, 2003, 2:53pm

hey thanks for the welcome grant..........johnny i took the quiz and everything points to cluster........i go back on manday to my dr and he said he will send me to a neurologist (did i spell that right)........so i hope to get somewhere........thanks for the quick responses

Title: Re: new to the site, not new to the pain
Post by brain_cramps on Feb 8^th, 2003, 2:58pm

Neuro is the first step. Good luck!

grant

Title: Re: new to the site, not new to the pain
Post by Lenny on Feb 8^th, 2003, 9:31pm

Print as much info. you can and bring them to the neou. aswell ( many ignorant neou.out there ) regarding our disorder. Show the doc the inf. that you got from this site( hopefully,he or she wont allow their EGO to get in the way ;D). Some doc's don't like their patient's that have too much knowledge ( i guess they have this attitude that they went to school all these year's to be our savior's ;D). I was just in Philly this past week( love that Genos :)).Way too cold,and the rain( not for me ).I live in L.A. and when it get's below 65 that's cold to me ;D ;D. Good luck and hopefully many PFDAN comming your way. Lenny

Title: Re: new to the site, not new to the pain
Post by Charlie on Feb 9^th, 2003, 1:12am

Welcome to bedlam and sorry you had reason to drop in. Glad you found us though. There are lots of good ideas and here is one which worked very well 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

Title: Re: new to the site, not new to the pain
Post by rogera on Feb 9^th, 2003, 9:19am

not good day, up all night and no imitrex. need help to get through
the day.
rogera

Title: Re: new to the site, not new to the pain
Post by hempgrl on Feb 9^th, 2003, 9:52am

hey guys thanks for all the advice.........luckily i slept through the night.........whoaaaaaaaaaaaaa...but it just makes me wonder when the next one will be back..........lenny i agree w. u about the dr.s when told mine i think this is the problem.........boy did i get the tude but luckily my mother in law had a wonderful neuro so i am bypssing my family dr and going right to the big guns.....i will let u know how it goes...i am so happy i found this site i dont feel like a freak no more i was beginning to think the pain was in my head and i was the one creating it i already printed some stuff out to take w/ me, my husband read it and i think he understands a lil bit better and realizes im not just being mean when i want to be left alone....i feel good today and sadly i am kinda excited to finially be on a path w/ a lil light at the end of the tunnel.............we'll see im sure i will be knocked down tonight when i go to sleep and be back in the slump of shittiness.............thanks guys..................ps...rogera hang in there bud your stronger than u think

Title: Re: new to the site, not new to the pain
Post by hempgrl on Feb 9^th, 2003, 9:59am

ooo lenny i forgot...........genos is ok.......hate to tell u this philly legend is they use kangaroo meat ....lol.....next time go to pats on south st ...........yum.................and the weather is getting worse we had 8 inches on friday i would love to be where its 65 right now 8)

Title: Re: new to the site, not new to the pain
Post by pigeon on Feb 9^th, 2003, 12:55pm

Hello hempgrl,

glad to hear you made it thru the night. I lived in philly most of my life. My neuro is in SW philly, I've been with him for 11 years, if you need more info, just let me know if I can help.

good luck 2nite
Joe P 8)

Title: Re: new to the site, not new to the pain
Post by rogera on Feb 9^th, 2003, 1:25pm

hello new to the cite
am allso new, have had these for 22yrs, and in a bad way,
out of imitrex, its the only thing
that helps me,
? how much imitrex can you people get, I can only get 12 pills a month
, shit don't get me through a week,
fellow clusterhead, rogera

Title: Re: new to the site, not new to the pain
Post by hempgrl on Feb 9^th, 2003, 1:25pm

hello joe................any dr that has some knowledge of these monsters would be great.....as i said im not going to my family dr but a neuro and i would also like to see another for piece of mind so if u could let me know his name that be great...........this will be my first time trying to deal w/ this since i have gotten coverage so im going for the gusto,,,,,,,,

Title: Re: new to the site, not new to the pain
Post by suzy617 on Feb 9^th, 2003, 2:30pm

Hi Hempgrl and Rogera.....

Glad you found us.

http://uselessgraphics.com/tex16.gif

suzy

Title: Re: new to the site, not new to the pain
Post by pigeon on Feb 9^th, 2003, 3:07pm

Hey again, Look for e-mail with doctor info, anything else just let me know. 8)

Title: Re: new to the site, not new to the pain
Post by Lenny on Feb 9^th, 2003, 4:05pm

It's amazing how good that kangaroo meat taste ;D L.O.L.!I did go to pats on south st.,my sandwhich at pats had a very foul smell to it :-[ ( too bad,i was starving ) where they have seating upstairs?? I am almost 100% sure it was pats ( all the locals rave about it ). BTW,very happy to hear you had a good night,hopefully that will continue.

Title: Re: new to the site, not new to the pain
Post by cootie on Feb 9^th, 2003, 4:54pm

Hi Hempgrl and Rogera.....hope yer handlein things Rogera...our doc had to call the insurence co's physicians only hotline to explain why Brad needed more imitrex and explain his situation.....they did approve 27 pills a month then but the doc had ta call and get more approved each month tho. We were only allowed 9 at first per month.....good luck ! Pam

Title: Re: new to the site, not new to the pain
Post by kissmyglass on Feb 9^th, 2003, 5:55pm

I got my first batch of imitrex pills yesterday & they gave me 30 to take as needed to abort attacks. I have no ins. though & had to pay $691! >:( Still trying to get over that one.... Can you get more than a dozen a month if you pay?
I Got to hit the welding supply shop & try to get some O2......asap.....
Hope you all become pain free...

Kev C

Title: Re: new to the site, not new to the pain
Post by Charlie on Feb 9^th, 2003, 6:47pm

Welcome to you as well Rogera.

Horrrible what this crap costs. The criminnals at my HMO have a co-pay for my anti-seizure drugs but I know they have criminal Imitrex restrictions.

I don't wanna read any more how much goes into fighting lawyers and doctors. It's very rare it costs much and almost all of the cases they are involved in, are settled cheaply out of court. We only hear of the rare exceptions. These are the people who spend tons more to try to limit awards. "By God, we're gonna make sure everyone just how big a bunch of pricks we can be."

http://www.headachesupportgroups.com/echat43/rippedsm.gif

I hope you can find some kind of help. There used to posts that using 50% less, worked just as well. You'll have to ask others who use it. I can't speak about CH drugs other than Inderal which was very effective for me.

Mean old Charlie

Title: Re: new to the site, not new to the pain
Post by ZAIRA on Feb 10^th, 2003, 3:20pm

I’m afraid for your story, try to be strong and don’t get descouraging otherwise CH will be stronger. Unfortunately CH is a unwelcome presence :'( ready to destroy oneself and the relationship with the other people.

I think of you from Italy!

Zaira :-*