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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> I'm new here and wishing you and I didn't have to 
        
(Message started by: Geoff on Jul 22^nd, 2007, 2:28pm)

Title: I'm new here and wishing you and I didn't have to
Post by Geoff on Jul 22^nd, 2007, 2:28pm

So many places to post I'm very confused, and that's scarey. I guess I need to start here.
Call me Geoff!

I'm a classical musician for 40 years now.
I never heard of cluster headaches until this June when I found out first hand. I started getting 2-3 attacks everyday for 2 weeks and I finally checked into a hopsital. It was the worse pain I've ever experienced. I was taking Imitrex when an attack would occur and after leaving the hospital I was on steroids for 2 weeks and now just varapamil. I did have two lidocaine injections into my neck as well.
I didn't sleep at all those 2 weeks or even in the hospital. As soon as I tried to lie down the pain would start so I just sat at my pc and researched clusters. I guess they will come back next season.
What made it worse was the imitrex was $26 a pill and I was needing 2-3 a day. That scared the hell out of me. My neurologist finally GAVE me 8 injection refills. and my regular doc gave me a voucher for 9 free pills. I've used one injection and one pill since leaving the hospital so I've got enough for a while if the cluster returns.
I'm also researching buying from India at only 3.79 a pill. Canada is still too expensive.
I'm waiting on my prescription for oxygen and hope it gets here soon.
Every time I feel the slightest pain starting behind my right eye, I get so scared it's going to start all over again.
Anyway, it's nice to know others understand. The F***G nursing staff at the hospital I was in didn't understand anything. Each night around 2am I would get an attack. I would come out of my room , pulling my hair out, holding my head with Both hands and wailing in pain and the stupid nurse would come and ask,,,,, "do you have a headache? would you like some tylenol?" I wanted to kill her. They never had my imitrex on the floor either so, they'd have to go down 6 floors and pick it up when I needed it. I went many times without any meds.
Welcome to the world of clusters.
Not sure why I'm here of if anyone can give me comfort, but I'm here now.
Back surgery was nothing compared to these clusters.

I must have been really bad in my first life!

Title: Re: I'm new here and wishing you and I didn't have
Post by DennisM1045 on Jul 22^nd, 2007, 4:45pm

Hi Geoff,

I'm sorry you had to find us but really glad you did. You may not feel it but you are luck to have been diagnosed so quickly. Some of us go years not knowing what is going on. This site is loaded with many very helpful people. Some of them are nuts but they'll all go to great lengths to help each other. Welcome to the Family.

The good news: clusters won't kill you.
The bad news: they are the worst form of pain I've ever experienced.

There are abortives available to shorten or at least take the wind out of an attack. O2 seems to be the most effective for most and has the least side effects. I hope you get set up on that soon.

Are you seeing a Neurologist that knows CH? If not, find one. See the OUCH site for starters. You are in Flordia and there are several board members from that area. I'm sure they'll be along to let you know who is good in your area.

You are not alone in this fight. We live with your pain so we understand. The best thing you can do after getting your ducks line up is live your life between the hits.

-Dennis-

Title: Re: I'm new here and wishing you and I didn't have
Post by Guiseppi on Jul 22^nd, 2007, 5:32pm

You're here cuz you belong here!

Imitrex pills probably won't help you as much as the shots because they take too long to get into your system, the trex shots are awesome cuz they get there like right now! What dosage verapamil were you taking? Most start out too low for it to be an effective preventative.

The oxygen should become your first line abort. For me, started at the first twinge, I can completely abort a headache in less then 8 minutes.

Dennis is right, consider yourself lucky to have been diagnosed so quickly, many wander for years getting mis diagnosed as sinus infections, bad eyes, bad teeth!!! So I'm glad you found us. Looking foward to trying to help you and having you stick around!!!

Guiseppi

Title: Re: I'm new here and wishing you and I didn't have
Post by thebbz on Jul 22^nd, 2007, 7:03pm

Welcome,
I see the medical staff is still in the dark ages. You want a tylenol [smiley=laugh.gif]. That is typical.
What a maroon.
all the best
jb

Title: Re: I'm new here and wishing you and I didn't have
Post by Geoff on Jul 22^nd, 2007, 9:23pm

thanks to you all who took the time to respond. At least I know there are living beings on this site. Not like some chat rooms I've been in recently. LOL

I'm on 240 mg verapimil. Not sure what it does but I take it.

My neuro doc keeps telling me one pupil is much smaller than the other. The one on my cluster side. I had an eye doc check it in the hospital but he said all was fine, so? I've worn glasses for 54 years. You'd think someone would have told me that by now unless!!! it's a new thing caused by the clusters. Anyone ever heard of that?
In a way, I'm quite lucky regarding relaxing. I never was able to and since I don't do "fun" I can focus all my energy on NOT getting a headache.
Now if there's any older cluster babes out there who would like to chat about something other than a cluster for a while, I would like that too.
Not looking for romance cause I'm bad at that too. LOL
Just some friendly mail or chat. I'm tired of opening up my mail and finding nothing BUT information on PAIN!
I know all about pain!
Thanks for accepting me so soon. I do appreciate that muchly! :)
I was going to post a pic too but can't figure out how to do it. Brain dead I guess

Title: Re: I'm new here and wishing you and I didn't have
Post by GrandPotentate on Jul 22^nd, 2007, 10:53pm

Hey Geoff, glad you found us, sorry you had to look. These folks have been helping each other through this for years, and have helped me tremendously.

Look into oxygen. Find a good neuro. Keep in touch.

Oxygen is the safest and most effective abortive for many of us. You'll need a lot and you'll need it fast. Oral meds won't work as an abortive. My digestion pretty much shuts down when I'm in excruciating agony, so the medication usually gets intomy system about 15 minutes after the hit is over.

My present (and about to get fired) GP suggested Tylenol and even suggested increasing dosage until it worked. The clueless bastard should have his license pulled. I am now hooked upwith a neuro that knows of CH,and we have discussed preparation for the next cycle. Don't be too tough on the nurses and GP's, though. This is something they very rarely encounter.

Please keep in touch with us on the board. We're here to help and here to learn.

Pro eh? I gave up a music career for a very good day job. Now my primary musical outlet is playing accordion in an oompah band. Fortunately my CH season doesn't fall in Oktober. I lead a pretty simply life while in a cycle.

Here's to PF days and I wish you good payin gigs!

Jon