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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hi all, just found this site
        
(Message started by: signdog on Oct 31st, 2007, 11:29pm)
Title: Hi all, just found this site
Post by signdog on Oct 31st, 2007, 11:29pm
autografix@snet.net My name is John, I'm 56 & have had cluster headaches for three years now. They happen this time of year... I'm on week 3, & last about a month. I get 1 to 3 a day that last from 30min to 4hrs. At first I thought I was developing a brain tumor, they came on so fast. I saw my GP, eye doctor, dentist, & finally an ENT specialist who told me about clusters. About the only thing that works for me, & not all the time is Relpax which is stupid expensive. I've heard that breathing pure oxygen works for some people. I'm intending to give that a try. Its nice to know this site is here. If there is any one remedy that I should try, please tell me.
Title: Re: Hi all, just found this site
Post by Wayne on Nov 1st, 2007, 6:29am
Hi John, glad you found us. Try a Redbull, whack one back when you feel a hit coming, it should stop it in its tracks.
Title: Re: Hi all, just found this site
Post by DennisM1045 on Nov 1st, 2007, 6:51am
Hi John,

Welcome to our little corner of the Internet and, from the sounds of it, your new home.  I'm sorry to hear you have clusters.  

Have you been diagnosed?  That is a good first step in fighting these things.  Get to see a good Neurologist and have them weigh in on what is up.  They are also the only way to get a perscription for Oxygen.

I use Oxygen 100% at 15lpm with a non-rebreather mask to abort almost all of my headaches.  I usually combine it with an energy drink like Monster or Red Bull.  Whatever has Caffiene + Taurene and is on sale  ;)  When this combination fails I resort to Imitrex Injections.  

I'm still trying to find the best preventive.  Verapamil works for many.  Other options are Topomax, Nerontin, Lithium and many others.  These help stave off the beast or at lest minimize the attacks and severity.

I take 12mg of Melatonin at night before bed to hold off night attacks.  This is surprisingly effective.  I've only had a few night hits this cycle since starting to use it.

You should read this info:

http://www.plainboard.com/ch/chtherapy.pdf

It talks about current treatment options. Bring it with you when you visit a Dr.  If they aren't up on CH (which most aren't) it'll help them decide on a good course of treatment.

You should also look at this info:

http://www.ouch-us.org/medications/oxygen/o2links.htm

It'll help you get the most from Oxygen and give you supporting documentation to convince a reluctant Dr about the need to perscribe it.

Good luck. I wish you many PFDAN!

-Dennis-
Title: Re: Hi all, just found this site
Post by Guiseppi on Nov 1st, 2007, 9:48am
Welcome to our crazy little corner of the world. As far as treatment theyhaven't found a "cure" for us yet but with a little bit of work you can manage them enough to maintain a relatively normal life! You need to view it as a two pronged approach.

1: A preventative medication.

That's something you take on a daily basis, while you are in cycle, (getting the damned headaches!), that helps reduce both the frequency and the intensity of the headaches. Some of the more popular, in no particular order, are lithium...(my silver bullet!), topomax and verapamil. Most of the prevents take about 10 days to ramp up in your system so doctors will typically put us on a prednisone taper, starting in the 80 mg a day range and tapering down to zero while our prevent ramps up in our system.

2: Your abortive strategy. You get a headache, now what?

Your first line abortive should be oxygen. After almost 30 years it's still my first line abortive. I can abort a headache in les then 10 minutes, usually closer to 6, using only oxygen. You must use a "non re breather" or "cluster" mask, nasal canulas are absolutely worthless. You need a high flow rate regulator, at least 15 LPM. For the oxygen to work, your lungs must get pure oxygen, no rebreathing of your air and no outside air. Read the link on the left and check out the OUCH website, our own expert BATCH, an ex fighter pilot, has posted a wealth of info on the correct usage of oxygen complete with info you can print and show your doctor in case he's hesitant to prescribe it.

Imitrex injectable is a great emergency abort for me but it's expensive and some on the board feel it may extend cycles so I shy away as much as I can from using it. Many can abort a hit using energy drinks, Rock Star, Red Bull, any containing both caffeine and taurine. Slam one of those down as soon as the headache starts.

You have much reading to do and much learning to get learned! You must become your own advocate as most doctors know little if anything about this condition. We'll help any way we can!

Guiseppi
Title: Re: Hi all, just found this site
Post by vietvet2tours on Nov 1st, 2007, 10:20am

on 11/01/07 at 09:48:15, Guiseppi wrote:
Welcome to our crazy little corner of the world. As far as treatment theyhaven't found a "cure" for us yet but with a little bit of work you can manage them enough to maintain a relatively normal life! You need to view it as a two pronged approach.

1: A preventative medication.

That's something you take on a daily basis, while you are in cycle, (getting the damned headaches!), that helps reduce both the frequency and the intensity of the headaches. Some of the more popular, in no particular order, are lithium...(my silver bullet!), topomax and verapamil. Most of the prevents take about 10 days to ramp up in your system so doctors will typically put us on a prednisone taper, starting in the 80 mg a day range and tapering down to zero while our prevent ramps up in our system.

2: Your abortive strategy. You get a headache, now what?

Your first line abortive should be oxygen. After almost 30 years it's still my first line abortive. I can abort a headache in les then 10 minutes, usually closer to 6, using only oxygen. You must use a "non re breather" or "cluster" mask, nasal canulas are absolutely worthless. You need a high flow rate regulator, at least 15 LPM. For the oxygen to work, your lungs must get pure oxygen, no rebreathing of your air and no outside air. Read the link on the left and check out the OUCH website, our own expert BATCH, an ex fighter pilot, has posted a wealth of info on the correct usage of oxygen complete with info you can print and show your doctor in case he's hesitant to prescribe it.

Imitrex injectable is a great emergency abort for me but it's expensive and some on the board feel it may extend cycles so I shy away as much as I can from using it. Many can abort a hit using energy drinks, Rock Star, Red Bull, any containing both caffeine and taurine. Slam one of those down as soon as the headache starts.

You have much reading to do and much learning to get learned! You must become your own advocate as most doctors know little if anything about this condition. We'll help any way we can!

Guiseppi
 


Yep this is the real deal.

          Potter
Title: Re: Hi all, just found this site
Post by signdog on Nov 1st, 2007, 10:34am
Thanks for the welcome & replies. I woke up last night a bit after 4:00am with the start of one, immediatly took a Relpax & put an ice bag on my head. I beat it back in about 30min. because it had just started. If it was further along, I doubt it would have worked.  So far today I'm ok. The Red Bull thing is an amazing piece of info, I'm definately getting some today. I'm also going full speed ahead on the pure oxygen.

Along with the Relpax, my doctor gave me a scrip for percocet, talk about worthless, they do absolutely nothing for a CH. That tells me that she probably doesn't know too much about them.
Title: Re: Hi all, just found this site
Post by Guiseppi on Nov 1st, 2007, 11:05am
MAJOR RED FLAGS!!!! A doctor who prescribes narcotic meds for clusters knows nothing about them! Narcotics take way too long to upload in your system and won't touch the pain of a CH. I won't even start on the addictive qualities of those meds for people like us who get hit multiple times daily!!! I hope your doctor isn't a close friend because it is time to find another.

I firgot to mention melatonin, an over the counter med you can find at health food and vitamin stores. If you regularly get the night time wake up hits, many have found felief from them by taking meatonin before they go to bed at night.

Guiseppi
Title: Re: Hi all, just found this site
Post by Linda_Howell on Nov 1st, 2007, 1:55pm

 
Quote:
my doctor gave me a scrip for percocet, talk about worthless, they do absolutely nothing for a CH.


  THAT IS CORRECT.
Title: Re: Hi all, just found this site
Post by Melissa on Nov 1st, 2007, 1:59pm
I see your in CT.  Here is a list of cluster sufferer recommended doctors in CT...

Connecticut

Alan Rapoport
Stamford

Stewart Tepper
Stamford


Alexander Komm
Vernon

Tanya Bilchik
Glastonbury

Fred Sheftell
Stamford

Dr. James B. Butler (Neuro)
Shelton


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