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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hello new member
        
(Message started by: outlaw67_11 on Nov 3^rd, 2007, 1:23am)

Title: Hello new member
Post by outlaw67_11 on Nov 3^rd, 2007, 1:23am

hi im a new member here
i have had cluster headaches since i was 8 years old
they started out with 1 headache every year or two
than when i was 22 i had my first cycle of 4-6 a day that lasted for 2 months and they have stayed that way im now 40 the cycles have increased to about 3 months and they average 6-10 a day now and in intensity
im now taking 240mg verapamil 50mg predisone and imitrex nasal spray.along with cold compresses lots of pacing and all the other nasty things that go along with them.
i use to feel like the only person on the planet that had them
im glad for the internet and for this site i have visited here before just never posted before
lots of good info here
thank you all

brian

Title: Re: Hello new member
Post by RichardN on Nov 3^rd, 2007, 8:03am

Hi Brian and Welcome

Sorry you're having a bad time right now . . . but very glad you came here . . . maybe we can help you get a little more PF time.

You didn't mention 02. Have you tried? If you've been reading the board, you know that most of us swear by it. I can't take Imitrex (arterie blockage and high cholesterol), so 02 is my only abortive . . . can usually kill him in minutes if used early-on in the attack. You need a 15 lpm regulator and a non-rebreather mask (the one with the bag) . . . and as soon as you can . . a Clustermasx . . . even more effective. 02 requires a script from your doc . . . would suggest you copy the 02 links available here and take with you (many docs have to be persuaded to prescribe 02).

I assume you're tapering-up the Verap? When I first came here (2/02), was having 6-8 hits per day, sometimes 3-5 at night. Regarding the Verap, my doc started me low (80mg? . . don't really remember), and the board advised it probably wouldn't do any good til I hit 180-240mg . . . had my first PF day in over a year when I hit 240 mg (had three hits that night, but had the 02 to help kill'em) . . . got as high as 480mg, Many here take much more and in combination with Lithium and other meds. I have no personal experience with pred, but many here who do.

Try Melatonin for the night hits . . . OTC supplement . . . 6-9mg 45 min before going to bed .. . . be prepared for some grogginess.

Read, read, read . . . much info here and many caring folks who truly know your pain.

Don't discount water therapy (see "water X 3" . . . link on left). I'm absolutely convinced this has helped reduce the frequency/intensity of attacks.

GET SOME OXYGEN

Be Safe, PFDANs

Richard

Title: Re: Hello new member
Post by DennisM1045 on Nov 3^rd, 2007, 8:46am

Hi Brian,

I'm glad you decided to say hi. Welcome home ;)

Richard did a nice job covering most of the bases. And you hit the most important point - knowing you are not alone has to be the biggest help to me. Changed my whole outlook on things. Anyway, welcome to the fray ;;D

-Dennis-

Title: Re: Hello new member
Post by ski2k on Nov 3^rd, 2007, 1:18pm

Welcome aboard!! ;;D

Just one more thing to add... Give Red Bull (or energy drink of your choice) a try. Make sure it has taurine and caffeine in it. Drink it down at the first sign of an incoming headache, and it will usually knock it right out. It doesn't work for everyone, but from what I've read, it works for most. Easy, quick, and readily available! Worth a try!
Prednisone helps a lot of us, but keep in mind it's for temporary use only! Long term use can cause huge health problems.
I also agree with Richard.... Get some O2! It seems to work miracles!

PF wishes,
Adam

Title: Re: Hello new member
Post by outlaw67_11 on Nov 3^rd, 2007, 2:14pm

thank you

for the info i havent tried o2 or redbull yet but i will try redbull and talk to my doc about o2 i did have a pf night last night and got some sleep for the first time in 3 weeks.
i do have another post and i seem to have offended some ppl which was not intended and for that i do apologize for

Title: Re: Hello new member
Post by Brewcrew on Nov 3^rd, 2007, 2:16pm

on 11/03/07 at 13:18:12, ski2k wrote:

Just one more thing to add... Give Red Bull (or energy drink of your choice) a try. Make sure it has taurine and caffeine in it. Drink it down at the first sign of an incoming headache, and it will usually knock it right out.

But not if you're taking verapamil in higher doses. I don't have a link, but there is a least one study out there that shows a much higher incidence of heart problems when combining these two.

Title: Re: Hello new member
Post by Charlie on Nov 3^rd, 2007, 5:54pm

Welcome Brian.....found you.

I thought that you might find the following useful. It worked for me and some others.

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

In any case, I'm glad you found us. This is where it's at and we're glad to have ya.

Charlie

Title: Re: Hello new member
Post by thebbz on Nov 3^rd, 2007, 6:12pm

Quote:

i do have another post and i seem to have offended some ppl which was not intended and for that i do apologize for

I dont believe you've offended anyone. You made a mistake and were corrected. Happens to me all the time.
Relax and welcome, maybe post another poem...for free!
all the best
thebb
caffeine rules!!

Title: Re: Hello new member
Post by ski2k on Nov 3^rd, 2007, 7:19pm

Thanks for the correction, Brew. I haven't read that before. If you find the link, send it to me, will ya?

Brian, please understand we have "trolls" in and out of here all the time trying to sell stuff.... Usually some "miracle cure" BS, so people get defensive (and offensive) when they think there's another one. It's considered a big no-no to try and sell things here. I understand you just wanted people to check out your book, but it's not a good idea to do that 'til we get to know ya a little better, and know you're not just here to sell it.
Anyway.... Hope you find relief soon! Keep us posted on how your various treatments are working!

PF wishes,
Adam

Title: Re: Hello new member
Post by Shedz on Nov 3^rd, 2007, 7:39pm

Welcome to the nuthouse ;;D 02 02 02 02 it works ;;D

Title: Re: Hello new member
Post by sldrswyfe on Nov 4^th, 2007, 5:01am

Welcome.

I sincerely hope you find the solace and comfort you need here.

The technique, posted by our Charlie, does really work. At times, it is amazing, as the attack disinegrates almost immediately...it really isn't "psychic" or anything.

When he relayed it to me, the very next hit I just closed my eyes and thought about my hands, and the pulse in them...I envisioned the blood from my head just "running downward", as if a stopper was pulled out.

After it worked over twenty times, I believed it.

Glad you made it. Sherri