Hello All,
 I'm new to this and don't know much about the internet. My name is Barry, located in West Palm Beach, FLorida. My 3rd season for cluster headaches. Need help on what works best. Thinking of the oxygen mask offered on this site.  Would appreciate any comments from your group.  If I post this correctly, guess you will have my e-mail: bamdom@aol.com .

Thanks, Barry

Barry, too complex an issue to make snap judgments. First, hope you have a doc who is experienced in complex headache issues. Many docs, including neuros, don' know beans.
---------Start by exploring these two sites and the OUCH group (left side of this page).
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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)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Hi Barry and welcome.

  Don't know what you've tried over the last 3 seasons,  but you will want to have as preventative like Verapamil, Caffergot, Lithium to name a few.  Then you will need an abortive to stop the headache once it has started.  Pure oxygen works for about 75% of us to abort a hit in 15 mins. or less.  It's safe, cheap and has no-side-effcts.  You will need a script from your Dr. for it and that script should read:

Regulator that goes to 15 lpm with a non-rebreather mask.  (NOT the cannulas)  Most of us have E-tanks.

There are links over to the left of where you are reading this now.  LOTS more info over there.

Linda

Hi Barry,
Welcome. Linda's right, a preventative and an abortive are a must as far as I'm concerned. I use Topomax as a preventative and O2 and Imitrex for abortives.

There are some other weapons against the beast that many of us find useful. Energy drinks with Taurine and caffeine (Redbull, RockStar)can help with shadows and I drink one after a hit of O2 as an abortive. Also, Melatonin at night (9-12 mg) can help prevent night time hits that occur during REM sleep.

These are things I use, but look around and read. There are a lot of knowledgable people here with great advice.

~Kris

Hi Barry, wish you didn't have to find this site, but glad you did.  You've probably already found a wealth of info in here but I noticed you said you weren't too experienced with the internet.  I've found, as I've surfed the site in this forum area, that there are no links on the left as referenced by a lot of people.  I have to retype START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE to find the home page with those links.  You've probably already figured this out, but just in case....

Brett

Hi Barry,
I have been using Oxygen for over a year and have great success! I really like it compared to having to use drugs.  I use a company  that brings a concentrator to my house and even arranges for an Oxygen concentrator to be delivered to my hotel rooms when I travel.  That has provided much stress relieve.  I feel very lucky that I get so much relief with the Oxygen.  
Jules

I am the wife of one who suffers from ch.  It has been 5 years since his first cycle and he is in his mid 50's.  I can not believe there is NOT one new drug or medicine found to help relieve this BEAST! :'(  we are in the Clearwater area and would like to know if there is a support group local.  I feel so helpless watching him go through this PAIN....PLEASE HELP

Are you saying he has had CH for 5 years?  or that it has been 5 years since since he's had a cycle.?  What meds has your husband been on?  There may indeed be new things he could ask his Dr. about, but us not knowing what he's been on,  makes it hard.

A couple of things he may want to try  are the energy drinks with 1000mg. of Taurine in them as well as Caffeine.  They really work fairly well if he can chug one down at the 1st. hint of an attack.  Melatonin at bedtime helps some with the night-time attacks.

Here is a list of medications:

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Linda


P.S.  Where you are right now (ch.com) is the only support group out there.  I can't find anywhere on your post to indicate exactly where you live, only Clearwater and that could be anywhere which doesn't give us too much help.  All of us in the US have people we know from here,  who sometimes have get-togethers but that's about it.  If you could tell us where you are, maybe someone near you could give you a call or something.  

Hi Barry and welcome. Sorry you are a CH sufferer but this is the best group of people with a lot of support and advice one could ask for.

My cocktail for fighting the beast is o2 to abort and Verapamil as a prevent and both worked wonders last cycle for me. It was this place that helped me to ask my neuro for the o2 and I needed to up the dosage of my Verap. I am out of cycle right now and appreciate the PF time.

Read all you can to your left and pull up a chair, you are with your new friends now.

Like your name! ;)

  Barry :)

Sorry I am knew to this.  I am the wife of a ch patient.  He has been in remission for 5 years.  The Dr. he sees is at the Univ of South Fla, and no there are not any new drugs.  He is on 80 (working up to) 480 mg Verapamil, 100% o2 at 12-15 liters, Imitrex shots (which he has had to take 2 the last two days) our ins only allows 12 in 90 days....then it will be off to the ER. He made several trips during his last bout and since not many people (even Dr.) do not know about Clusters they are not very helpful.  I believe last time they tried Morphine, no luck and one time tried dalaudin//no help.  I feel so helpless.... :'( in Clearwater, Fl

Papa, sounds like so far your husband is on a good course as far as meds go. the verapapmil may take a few more days of 480mg's before it kicks in. as i am sure you have read, some things work for some of us, some things dont. I too take verap. and use O2, since i found this site, i have been drinking a red-bull as soon as i feel the hit coming on, then getting on the O2. seems to help. I also take 10Mg's of melatonin just before bed-time,(i work shift work, so "bedtime" is relative) , and it really has worked in stoppping the "sleep" hits. good luck, and you HAVE found the right place. you will get more info and caring replys here than ANYWHERE else!  Tuck