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        New Message Board Archives >> 2002 Posts >> i cant take this
        
(Message started by: sd19731 on Sep 30^th, 2002, 5:27pm)

Title: i cant take this
Post by sd19731 on Sep 30^th, 2002, 5:27pm

i am a 42 year old male, i have had chese headaches over the past 20 years. this is getting old doctors dont help, and i cannot stand the pain anymore. why does this happen to me? someone please write, so i can see if im missing any kind of treatment. thank you, steve

Title: Re: i cant take this
Post by Bob P on Sep 30^th, 2002, 5:31pm

Hey Steve,

I'm 52 and been at it for 32 years. You can take it!

Probably best for you to tell us what you've tried and then we can suggest anything that you've missed.

Title: Re: i cant take this
Post by Jim R on Sep 30^th, 2002, 5:40pm

Steve,

I agree with Bob - we CAN take it! And, there are drugs that work...what have you tried? Many many people here find relief from verapamil, myself included (I also use catapres, which apparently is now necessary for me to make the verap. work). I know how you feel - I think we've been "there" - don't give up and stay connected to this message board. You will find help here and maybe an answer to relief of the pain. Are you going to a neuro? If not, get to one pronto - one that knows about CH's (not all of them do...) Best wishes to you, Steve and let us know the answers to the above ? - Jim R

Title: Re: i cant take this
Post by sd19731 on Sep 30^th, 2002, 5:48pm

today i started varapamil 80mg three times daily, also imitrex injections as needed.so far nothing seems to work , i did at one time get some help from imitrex 50mg tabs, it would work once than the next time it didnt, and the pain was much more severe, like it is now.

Title: Re: i cant take this
Post by Jim R on Sep 30^th, 2002, 5:55pm

verapamil sometimes takes up to a week to get started. I'm on 480 mgs./day, others here are on even more - up to 960 I believe. Give it a chance. Although I can't use imitrex, my understanding is that it should work pretty fast, so maybe somebody else here can address that aspect. Have you tried oxygen - I can be a life saver with clusters - usually within 5 minutes it can relieve an attack. I know, it IS discouraging...I've had these for 24 years and tired so many drugs it's ridiculous, but have , I think, finally hit upon the right combination for this year's attack - hang in there and keep trying the meds until you find some that work. Best wishes to you - Jim R

Title: Re: i cant take this
Post by 2late on Sep 30^th, 2002, 5:59pm

it's hard to believe neuro's aren't helpin' keep looking until you find one that understands CH ( they are out there) immitrex pills & nasal spray never helped me, have you tried injections? they work wonders for alot of us. welcome to the board!!! ..........2late

Title: Re: i cant take this
Post by domm on Sep 30^th, 2002, 6:30pm

Steve - I'm using 180 mg/day of Verapamil, but it took two weeks to kick in. Haven't had a HA for 11 or 12 days now (man, they go by fast when there's no pain) I used O2 as an abortive. At first it didn't work, then I learned how to use it properly - a non-rebreather mask at 10 to 15 lpm. Read up on it on the medications board or do a search and put *oxygen in. There are plenty of posts on this. O2, when used properly, will slay the beast within a few minutes - at least it did for me.
hang on - you can deal with it.
domm

Title: Re: i cant take this
Post by Bob P on Sep 30^th, 2002, 6:40pm

At the clusterhead convention in Vancouver a couple weeks ago, Doc Robinson said that verap was the best preventative but clusterheads need to take it "in quantities that would give a cardiologist a heart attack".

Doc Goadsby says to increase the dosage until a max of 960mg is reached, the clusters stop or side effects cause you to stop - whichever comes first.

Doc Robinson said some go as high as 1080mg/day. He also said some lcusterheads use as many as 8 Imitrex injections per day (don't think I would try this one without close medical supervision though).

Title: Re: i cant take this
Post by jonny on Sep 30^th, 2002, 6:49pm

8 Trex injects a day?

Friggin death wish there.

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

Title: Re: i cant take this
Post by pjbgravely on Sep 30^th, 2002, 8:57pm

Try hot sauce under the tongue(I just drink it), Ice packs, hot or cold showers, exercise, don't lie down, Charlies method, and Stressing yourself out

Title: Re: i cant take this
Post by NancyMcFree on Sep 30^th, 2002, 9:16pm

The Imitrex nasal spray didn't do a thing for me (and that works faster than the pills). Imitrex injections are a Godsend. O2 with the non-rebreather mask works if I catch the headache early enough.

Hope this helps. Hang in there ... you'll find your "combo platter" of meds that work for you yet. In the meantime ... we are pulling for ya !!!!!!!!!

Title: Re: i cant take this
Post by Charlie on Oct 1^st, 2002, 2:56am

Ditto to what has been said. Welcome aboard and here is Charlie's method:

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 very 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. 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 for this to take hold but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to concentrate on keeping blood away from the head. He thought the easiest is 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. I like to keep at it a few minutes longer than seems necessary to insure success.

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: i cant take this
Post by kim on Oct 1^st, 2002, 7:17am

Hey Steve,

Read your posts and sure know how you feel. The verapimil works for tons of people here. It can take a while to find the right dose, also to kick in. Hang in there. You can take it! Steve, I came here in back in February and learned about a better way to use o2. My cycle ended b4 got the chance to check it out, but I read that huge percentage of people get relief from using o2 with a non-rebreather mask (I had previously had a tank delivered with the nose plugs - it did not work for me). Get the 02 and the mask and start suckin! Who knows, IT COULD WORK!

Hope it gets better soon.
Kim

Title: Re: i cant take this
Post by LTBullitt on Oct 1^st, 2002, 11:05am

Twenty years with this and still going, it's pretty impressive. So I mean, you have proven you can do it. Don't forget there is always that little extra in you. Completly drained, used up and it kicks in. I don't know where it comes from but if I have it you sure as hell do.
Crazy Lee in The Wild Bunch??? yea, looked like he was out? Then he jumps up and takes out those two #!@# at the window!
So I recommend watching alot of Peckinpah and healthy doses of "Bullitt"
WWSD? What would Steve do? :)
As for docs and meds alot of people here really know there stuff, I'm just not one of them.
and don't forget Charlie, he beat the bitch

Title: Re: i cant take this
Post by Linda T on Oct 1^st, 2002, 2:29pm

Hi Steve - can't add anything to what's been said before me but - you can take it! Every day that goes by you just kicked the beast's ass.

There's alot to be said from reading all you can on this board. There's tons of info here. There's lots of people who can give you some really good advice. Use this board as a life line. It will work. Take it from. I speak from experience.

Wishing you all the best and PFDAN always, Linda T