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(Message started by: vikesfan on Oct 17^th, 2004, 1:18pm)

Title: new here
Post by vikesfan on Oct 17^th, 2004, 1:18pm

Hi all.I just learned that I am a sufferer.I went to the Dr. about a year or so ago with this crap and he gave me feurocet(spelling?),it kind of helped.I was in remission for about a year,but now a new cycle began a week ago.My wife did some on-line research and found out what the Dr. didn't.I had never heard of clusters before,and wished that I never had.My God,what pain.I am going to see a neurologist,ASAP.I hope to wake up to find this is all a bad dream,but I know better.I have shadows all day and the big one at night.I dread the night.It's been seven nights in a row.The waiting for night is unbearable,and the night is pure hell.It amazes me how this monster has taken me over.Anyway sorry for rambling on, but,it's nice to know that I'm not alone(not that I wish this misery on anyone).I hope to make some friends here and to be supported as well as offer support,and also to learn about what can help.Thank you all.MAKE IT STOP!

Title: Re: new here
Post by E-Double on Oct 17^th, 2004, 1:22pm

Welcome and sorry....

RESEARCH RESEARCH RESEARCH !!!

You have a new family that is here for ya so open up and learn as much as you can.

Wishing you pain free days!

Eric

Title: Re: new here
Post by clare on Oct 17^th, 2004, 1:35pm

hi vikesfan.

i'm happy you found this site, but not happy you had to.
read as much as you can, i've lernt so much since finding this site. and reading other peoples experance and how they cope helps me. just to no your not the only one who crys like a baby when the beast is apon you. so if your looking for support, your in the write place mate.........
stay strong, we can all fight the beast together.....

Title: Re: new here
Post by Rock_Lobster on Oct 17^th, 2004, 6:33pm

Treatments abound.

Topamax is my present preventative of choice. Imitrex vials/syringes is my current abort.

Title: Re: new here
Post by cschick on Oct 17^th, 2004, 9:34pm

As you can tell, I love the o2 treatment. Fiorocet is ok to use for my migraines but doesn't do crap for CHs, PLUS can cause really bad rebound headaches. Watch it with that. O2 works well if the beast is caught when he first rears his fat, ugly beast head. RESEARCH as much as possible, the internet is a wonderful thing and take print outs with you to the Dr. My Dr. was great and pretty impressed that I was taking charge of my health. Don't be afraid to ask for what you want to try. I was also put on VerelanPM (which is in the Verapamil "family") - just started it Friday night still waiting to see if it is going to work. Been pain free for 3 nights with faint shadowing during the day - glad you found this place. I just found it a few weeks ago and already feel right at home! Welcome but sorry you are here!

Hugs and PF vibes coming your way!

Karen

Title: Re: new here
Post by vikesfan on Oct 19^th, 2004, 12:39pm

Thanks all,I just came back from neurologist and he gave me Verapamil and I was scheduled for an MRI on my brain(I hope they find one).Does anybody have any luck with it?Thanks again.

Title: Re: new here
Post by angel-ache on Oct 19^th, 2004, 4:37pm

Hello Vikesfan

I am also a newbee to this site. I have found it very very helpful. Note all the great information to your left. I am currently working on the water x 3. I should of had a headache this morning, but I didn't. Is it the water...hmmm...or not. Hard to tell.

I too have had an MRI scan. No luck, I still had a brain nothing else out of the ordinary showed up. MRI's are good to maybe establish an old forgotten injury that could be a source. I have feeling they will find your brain, but nothing else to create a prognosis. (I had the MRI done after my headaches were finished)

Angela

Title: Re: new here
Post by Charlie on Oct 20^th, 2004, 5:21pm

Lots of people here have some success with Verapamil. It sounds good to me. Here is a technique to try that worked for me:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
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. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. 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. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

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.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head 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.

I hope this technique is helpful and I wish you the best of luck

Charlie

Title: Re: new here
Post by kcorrigan on Oct 20^th, 2004, 5:38pm

I've been on Verapamil for over 7 years now. Does it help? I believe that it does. I go into my CH cycle if I'm off of it for more than 72 hours. Could be just because I'm used to it being in my system, but I'm not willing to quit taking it for fear of bringing on an attack.

I still get cycles in spring and fall, but have skipped some - there's no pattern to these damn things that's for sure.

Anyway, good luck to you.

Title: Re: new here
Post by Gator on Oct 22^nd, 2004, 4:50am

on 10/19/04 at 12:39:40, vikesfan wrote:

Thanks all,I just came back from neurologist and he gave me Verapamil and I was scheduled for an MRI on my brain(I hope they find one).Does anybody have any luck with it?Thanks again.

Nope. Out of all the MRI's been taken here amongst this crowd, not one brain has been found. The occassional cobwebb, a dust bunny or two. That's about it. ;;D LMAO

Actually a lot of people have good results with verapamil among other things. Sometimes two meds that did not work separately will combine and work, ie verapamil and lithium. Read everything you can. Print out stuff and make notes on what you want to say to the doc. Knowledge is your best weapon against CH and moronic doctors.

Personally after a year of searching, I still have not found a preventative. O2 and imitrex vials/syringes are my abortives.

Aside from all the links to the left, there; here is a good thing to read and print out for your doc. It covers preventative, abortive, transitional and surgical treatments for ch.

http://www.future-drugs.com/admin/articlefile/ERN020304.pdf

Anyways, welcome to our little corner of the web. Sorry you have a reason to seek us out, but damned glad you found us. Best site on the internet for information and support of CH. And the damned finest people you will ever meet. Except for Don. He sucks. Next time you see him post, tell him so. LOL

Gator