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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> New to you guys but not to the Beast
        
(Message started by: Theriophonic on Oct 8^th, 2005, 8:21am)

Title: New to you guys but not to the Beast
Post by Theriophonic on Oct 8^th, 2005, 8:21am

I feel kinda silly calling it "The Beast" but I'll get over it. Anyway. Hello all. My name is Steve and I'm pretty sure that I'm "one of you", sounds ominous huh. I havn't been diagnosed but all the symptoms fit. From what I know now after reading a lot on this sight I'm an episodic CH sufferer.

They started around 1987. Out of nowhere I started to get a lot of strange headaches, varying in length from as short as 15 min. to a couple of houres. I always thought the were sinus related so I would take some sinus pill or another and use a lot of nasal spray. I never could determin if it was working based on the length of the headache. I'm sure I just kept telling myself they worked because I had to do something. And then, once again out of no where, they would stop. I would think to myself "Wow that sucked" and then forget about them. I have an amazing ability to ignore anything that isn't bothering me right now. But then they would come back. Maybe a few months maybe a year or more. But always, they return.

This has been the pattern for the last 19 years or so. I'm going back to my Dr. in the next week and planting the CH idea in his head.

Thanks for all the good info. I think it will be very helpfull.

Steve

Title: Re: New to you guys but not to the Beast
Post by AussieBrian on Oct 8^th, 2005, 8:33am

G'day, Steve, and welcome to the mad-house. You say you've read plenty here so I presume you've checked out the cluster quiz over on the left.

Good luck with the GP, and as you're no doubt already aware our only defence is information.

It's also terrifically important that your diagnosis of CH is absolutely correct because otherwise the various treatments will be just poisons to you while another problem is being left untreated.

All the best, mate, and let us know how you get on.

Brian.

Title: Re: New to you guys but not to the Beast
Post by Kate in Oz on Oct 8^th, 2005, 8:37am

Hi Steve,

Glad you found this site.

Are you in a cycle at the moment??

A little bit of info goes a long way so strongly suggest you print off some of the stuff here and take it along to your doctor. Sorry I'm a newbie here too so not real savy with how to give you the links ...

Wish you all the best, and if you are hurting now hope you can get your meds sorted quickly. Lots of suggestions of what has worked for some (?) on here.

Keep us informed how you get on,

Kate

Title: Re: New to you guys but not to the Beast
Post by Sandy_C on Oct 8^th, 2005, 9:40am

Welcome, Steve. Glad you found us but sorry you are here. It is absolutely vital that you get a correct diagnosis. Like Brian said, there are many conditions that can mimic CH, so you need a proper diagnosis so that correct meds can be prescribed.

The people on this board are awesome! They have more combined knowledge about CH than any doctor in the world, that's why we are all working hard to educate the medical community. Someone is always here, 24/7/365, so jump in any time. Ask questions, yell, scream, vent, crack jokes, tell us stories, tell us about you. We are a family here, and we welcome new family members.

Best of luck with your GP. Let us know how it turns out.
In the meantime, read, read, read. Your best offense against the "beast" is your own knowledge.

By the way - I call my CH the "bitch", because it acts like a vindictive woman (and we all know how vindictive a woman can be, now don't we ;;D)

Sandy

Title: Re: New to you guys but not to the Beast
Post by unsolved1 on Oct 8^th, 2005, 4:57pm

Welcome Steve ! If it's clusters you have, prepare for a long battle by educating yourself. Read, read, read. Here's something to get you started.

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

PF wishes
UNsolved

Title: Re: New to you guys but not to the Beast
Post by jcmquix on Oct 8^th, 2005, 10:21pm

Hi Steve..

Nice to meet ya, sorry its under these conditions...

Looks like everyone got you off to a good start, I just wated to welcome you aboard, stick around and Read, read, and read some more...

This site has been a God Send not just for me, but my entire Family....

If you have any questions, ask them, the only stupid question, is the one you do not ask. If you need a place to Rant or Rave this is it, everyone understands what the BEAST can bring upon you & your family...

Welcome to the Family...

God Bless & PFDAN's
Charlie

Title: Re: New to you guys but not to the Beast
Post by Theriophonic on Oct 9^th, 2005, 5:07am

Yep I've taken the quiz. 16 of 16. One question was in doubt because I never tried to track the time of day. That may sound strange to some but I have no real sleep patterns so that makes it hard to track without paper and pen. As to cycle, it has been about a week so I guess I'm through for a little while.

Just nosey, but every time I have seen someone mention which side they are effected on it seems to be the right side. Am I a minority being a lefty?

Title: Re: New to you guys but not to the Beast
Post by AussieBrian on Oct 9^th, 2005, 5:25am

on 10/09/05 at 05:07:11, Theriophonic wrote:

Am I a minority being a lefty?

Nope, and don't be surprised if it suddenly changes side for all or part of a cycle. Bloody thing hasn't read the rule book.

B.

Title: Re: New to you guys but not to the Beast
Post by Gator on Oct 9^th, 2005, 7:04pm

Howdy Steve! Welcome to the best place on the web for information and support of Cluster Headaches.

Get thee to a neurologist who specializes in headache and take printouts of the document unsolved gave you and of this as well:

http://www.chhelp.org/mhni.html

This paper, also by Dr. Rozen, justifies the use 100% pure oxygen at high flow rates in treating cluster headache. Oxygen is inexpensive compared to other ch medications and has fewer side effects. Depending on what you read, it is effective as an abortive for somewhere between 50% and 75% of CH sufferers. It will abort about 75% of my attacks, which makes the imitrex injections go a hell of a lot farther.

Get diagnosed and get informed. You are your own best advocate in your treatment and to do that, you have to know your stuff. READ!

Mike

Title: Re: New to you guys but not to the Beast
Post by Barry_T_Coles on Oct 18^th, 2005, 9:55pm

Hi Steve

Welcome but sorry you have to be here.

Every one before me has given you the good drum, I have only suffered for about the last six years and only diognised late last year so i'm only a pup at this caper and wow the info here is priceless.

Read & read some more there are all sorts of things worth looking at, I know when I first come on board what I was looking for was a miracle cure only to find that there aint, just a lot of wonderfull people willing to help get you through and this is the best drug I have found.

Kind Regards
Barry

Title: Re: New to you guys but not to the Beast
Post by KMT on Oct 22^nd, 2005, 4:37pm

Steve

Welcome to the family sorry that you had a need to find this place but am darn glad that you did.

PF wishes Kim

Title: Re: New to you guys but not to the Beast
Post by BMoneeTheMoneeMan on Oct 23^rd, 2005, 12:54pm

Welcome Steve. Like everyone said, this site is the most informative CH related site in the world. You are probably going to have to teach your doctor about cluster headaches, so make sure you read read read.
Like Gator said, Oxygen is cheap and it provides relief for many. For me, it reduces or aborts 90% of all CHs.

Make sure to get diagnosed as best as possible. Whatever may be prescribed, make sure there are no interactions with any other meds or conditions you may have. Some of the CH meds are pretty hardcore.
Pain Free wishes to you, and GL in getting an accurate diagnosis. BTW, I'm a lefty too. ;)
BMonee

Title: Re: New to you guys but not to the Beast
Post by jcmquix on Oct 23^rd, 2005, 2:30pm

Hi Steve..

No.. you are not odd being a Lefty.. I am mostly a Lefty also, but mine switch up on me towards the end of the cycle, I have had them go left, right, back to left.. I have never let one run its course though, I always take a TREX shot, cause it drives me totally insane jumping back & forth...

Godd Luck & Keep us Posted

God Bless
Charlie