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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> After a two year remission.....IT'S BACK!!!
        
(Message started by: wam on Sep 9^th, 2006, 11:50pm)

Title: After a two year remission.....IT'S BACK!!!
Post by wam on Sep 9^th, 2006, 11:50pm

Hello to all!!My name is William.Im posting this message because I have no one eles to talk to about CH.I really dont get any sympathy from wife or others,not that they "don't care"but they just dont understand.Im 32 and been suffering since 17.There have been times the pain was so bad and went on for so long I wanted to die.Its bad enough I/we get these but 4-5 times a day is insane.The worst is when I wake up in the middle of the night.Always around 2am.This takes a toll on my job.Im a UPS driver.Its tough as hell to deal with the demands of the job when Im having an attack.I know alot of you know what Im talking about.After two years of being pain free from CH...its back.This is the longest its been between attacks.I was starting to think that maybe,just maybe I was finished once and for all with them.How foolish I was to think that.Im now going on my second week of hell.Cant get a full nights sleep to save my life.Four nights ago I awoke around 2am to pain that would be a 10 on "the Kip scale".Ice packs did not work,standing under the hot shower did nothing and Advil gel caps were treated as candy.I ended up on the floor in the fetal position crying,screaming and wanting to die.The attack lasted 5 hours.I still dont understand what EXACTLY causes CH to occur.My doctor said for some unknown reason blood vessels in the brain contract and this will cause the pain on the top right side of my head,behind my right eye(always the right) and down my face toward my teeth.I dont eat anything that will trigger it.I eat the same things every day for the most part.I dont drink or smoke.They have pills for just about everything these days.How about something for us CH sufferers.Well...that about it.I know this is a long post.For those who read it all thank you.Take care everyone!! :'(

Title: Re: After a two year remission.....IT'S BACK!!!
Post by Guiseppi on Sep 9^th, 2006, 11:59pm

There are lots of succesful treatments, nothing will cure it, but with knowledge you can manage it.

I just finished an almost 2 year break and started deluding myself into thinking it was gone for good.....wrong!!

Read up on the treatments, I'll give you my regimen as an example of a preventative and an abortive. When my cycle starts I go on a 10 day prednisone taper from 80 mg a day to zero. I start on lithium, ramping up to 1200 mg a day as I ramp down the prednisone. The lithium kicks in after about 10 days, the prednisone holds it at bay until then.

For the headaches that break thru the lithium I use oxygen and cafergot, and for the really nasty ones I use imitrex injectables.

Thats it in a nut shell. Stay away from the over the counter stuff, they don't do squat and cause you more problems. I hope something I said helps you, if not keep on reading, there's sooo much help waiting for you here. And welcome to your new home.

Guiseppi

Title: Re: After a two year remission.....IT'S BACK!!!
Post by georgej on Sep 10^th, 2006, 12:15am

Welcome, William.

I'm episodic like you are, and have gotten these since I was 13. I'm 52 now. For the first twenty years, I'd get them seasonally, regular as clockwork, every six months. For ten years after, they came once a year. My last three cycles have been three years apart. So something changes as you get older--or at least it has changed for me.

I don't medicate (a personal decision that I wouldn't recommend for anyone who is not convinced that it is the best tactic for them) so I won't address medical approaches--I'll leave that for those with greater medical knowledge.

At least know that you've come to a place where people truly do understand what you're going through. And that is like gold.

I'm sure you'll soon get replies from many others. Explore the links at the left of your screen, particularly the "oxygen info" link. Oxygen, properly administered, is a highly effective abortive for many of us.

Again, welcome home.

Best wishes,

George

Title: Re: After a two year remission.....IT'S BACK!!!
Post by Brumm on Sep 10^th, 2006, 8:15am

Welcome.
Ihope you will find it good being here. I felt relafe when I found this site others understanding what a hell we are going through. It helpsnot being alone.

Title: Re: After a two year remission.....IT'S BACK!!!
Post by bothofus on Sep 10^th, 2006, 9:01am

Hello William,
I too had about a 2 year vacation from this hell. I am episodic with mine lasting about 6-10 weeks.
You definitly need something to PREVENT these attacks and something to STOP them. I'm not a doc, but I don't know how long I could last without my meds.

Please read the links on the left for a ton of info and listen to the good folks on these boards. They are here to help.

Are you seeing a doc now?

Carl

Title: Re: After a two year remission.....IT'S BACK!!!
Post by maffumatt on Sep 10^th, 2006, 11:17am

Hang tough man, you have come to the right place. We ALL know what you are going through. Read and learn. Be well and know that we are here for you.
Matt

Title: Re: After a two year remission.....IT'S BACK!!!
Post by wam on Sep 10^th, 2006, 12:40pm

Thanks to all who posted back!!Its a great feeling to know In not alone out there.Having support is very heart warming.Carl.....Im not on any meds.I tried Imitrex 5 years ago and had a bad reaction to it.My neck swelled up and it made me hard to breath.Its almost funny because not only do I suffer from CH,but Im allergic to one of the meds that most people find helpful!! [smiley=laugh.gif]I have about given up on doctors because I find that there is really nothing to be done about my CH.I just suffer through them.I just keep asking myself.."why me"?Thanks to Guiseppi,Georgej,Brumm,Carl & Matt for your support.Im here for you also guys!!!

-William.

Title: Re: After a two year remission.....IT'S BACK!!!
Post by Bob_Johnson on Sep 10^th, 2006, 2:51pm

Agee on need to catch up on current therapies.

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: After a two year remission.....IT'S BACK!!!
Post by PL259 on Sep 10^th, 2006, 5:21pm

Hello William,
Hang in there, as silly as that sounds. It is true. There are many alternatives. I went for about 17 years as episodic, having from 1 to 4 cycles a year, no pattern, no special season, just getting hit. I think it was in 99' when I found a good doctor and preventive meds. I never get off mine. It knocked the beast from a totally random affair to an every other year affair. About due again if history holds.
Read, learn, and have a receptive doctor. Different things work for each individual. I hope you find yours. Just never quit looking or trying.

JImbo