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New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> thank god i found ya'll
(Message started by: scooterr309 on Aug 15th, 2005, 3:58pm)

Title: thank god i found ya'll
Post by scooterr309 on Aug 15th, 2005, 3:58pm
I just got back from the neurologist and he says I'm a clusterhead. I've been battling this crap for over a month now(this time). When I went in I started listing the symptoms I've been having and he said it was textbook for cluster headaches. He has put me on a daily med(can't remember the name, just dropped off the RX) and imitrex injectable. Also prescibed oxygen. I guess this is kinda normal from what I've read so far. After having bouts with these for years and having it treated as a sinus infection with no relief, I'm glad to finally get a different course of action. I'm 48 years old, married 26 years, 1 kid. After reading the intro statements I can see there are many of you out there suffering like me. I was ashamed to admit that I acted like I did in the middle of the night after waking up with one of these monsters. Squeezing my head til I thought it would crack, pounding my head on the floor, standing in a scorching hot shower till the hot water ran out and wimpering like an infant. I can't wait untill I find out if these meds will work. Just wanted to introduce myself and share my experience. I'm so glad this board is here.
Thank you, Thank you, Thank you.
Scooter

Title: Re: thank god i found ya'll
Post by burnt-toast on Aug 15th, 2005, 4:22pm
Welcome - yes we all do suffer somewhat.  There's a lot of good information available to help and support from folks that understand this nightmare.

Check your meds. with a Pharmacist and/or prescription drug reference, be aware of the side effects and interactions with other meds. from sites like the following.  Google searches with a little homework will give you many sources of good information    

http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202330.html

Welcome to the pain train - we understand us - its the rest of the world that needs educated.

Tom




Title: Re: thank god i found ya'll
Post by marlinsfan on Aug 15th, 2005, 4:26pm
Hey scooter, welcome to the nuthouse   [smiley=laugh.gif]

Make sure you get your O2 filled and use that as often as you can. Read the link on the left to see how to use it properly to ensure you abort with it. It works wonders for me, in fact I haven't used my imitrex since I found O2. There's another link on the left which teaches you how to stretch your trex doses, cause they are expensive!

Melatonin at night has worked great for me too. I take 9 mg every night, 30 minutes before going to sleep, and it has helped cut down the number and intensity of the night-time attacks. You can buy it at your walgreens/supermarket, in the vitamin section.

PF wishes,
Marlinsfan

Title: Re: thank god i found ya'll
Post by E-Double on Aug 15th, 2005, 6:59pm
Hiya

This is a great resource to know like the back of your hand...print it out and give it to the doc

http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!

Since you do have or are getting oxygen, check here to make sure it is the proper set up
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753

If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Like I said we are all different.

Best wishes, good luck & stay as positive as you can!!!!

Eric

Title: Re: thank god i found ya'll
Post by Sandy_C on Aug 15th, 2005, 7:02pm
Welcome Scooter.  Sorry you had to find us, but glad you  did.  Wishing for you, a good doc, who knows about (at least) and had a good understanding of CH, who can help you.  Read these boards, read read, read.  Take this info to your doc, there are all sorts of things that help, not necessarily prescription meds.  Just read and absorb.  

Again, welcome to the funny farm.

Sandy

Title: Re: thank god i found ya'll
Post by RichardN on Aug 16th, 2005, 11:13pm
Welcome Scooter

 Make sure you post your meds . . . . there will surely be responses from members who can relate their experiences with same.
  You are fortunate to find a doctor who prescribed 02 right off the bat . . . .  frequently, we clusterheads have to battle, cajole, insist on 02.  It's my only abortive and I go nowhere without it .. ...  must be used properly (15 lpm regulator and non-rebreather mask) to be effective.
   
  Be Safe,  PFDANs


     Richard



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