It feels so great to meet a group who understands the pain. I've tried to explain it to my friends and family, but even the ones who've seen me at 8 or 9 look at me like I'm crazy when I'm talking about the headaches. I've had CH since last year, when I was out of work for 7 months. The last 3 weeks have been a living hell, dealing with another round of headaches coupled with the fear of not having a job to go back to when they finally decide to go away. I've been trying to hold down a regular job plus college at nights, but I'm useless during the day, either from the one or two attacks that don't come at night or from the total of 2 hours of restless, interrupted sleep I was able to get.

I'm not usually a big talker, especially at 1 am with a shadow, but feel free to ask me any questions.

Oh I have lots!!!!

What have you used to treat your CH in the past? What has and has not been effective? Do you have a decent neuro? Do you have oxygen yet? The strength in this board is the gazillion years of experience everyone brings to the board. Maybe you'll throw a new idea to us, maybe we can point you in a good direction.

The good news is YES, everyone here understands what you're going through, and you'll never have to face the beast alone again. Welcome home!

joe

Hi, welcome...

What took you so long to find us  ;)

Once you've answered the questions of Guiseppi the nosey we might be able to offer you some suggestions on how to get your life back.

I've seen so many come here so desperate and, within a few weeks get their lives back again.  Open up and we'll see if we can't get you on the right track too.

In the mean time, read everything here and learn.  It's the best way to find the path that will work for you.

Looking forward to reading your story...

-Dennis-

Wr.
Welcome to Clusterville.  Tell us ALL about yourself. What have you taken, what are you taking. What works, doesn't work? Everything - we'll drag it out of you eventually anyhow (some of these people are SO nosey!)  ;)

Have you tried O2 - that's the ONE thing most of us agree on cause it works for about 70% of us. Done RIGHT with the right mask it can be a lifesaver - done WRONG it's useless -so you need to do it properly. We GIVE classes on doing it right.

As you've probably figured out, we ALSO use a little humor in dealing with these horrible things. A lot of us are chronic (never get a a break - my last episode began in 97 and haven't had a break since, but humor keeps me sane). Nothing you can say is anything we haven't heard or been thru, so when we say WE UNDERSTAND - you can believe WE DO.

Melatonin at night before bed might help you get some rest (it does a lot of us) 15-18 mg before bedtime helps us get thru the REM sleep where the headaches start.  And RED BULL (or any energy drink with lots of caffeine and at least 1000mg of Taurine) chugged at the first sign of a CH sometimes aborts the hit.

But let us know what you're doing for prevents etc.

Again welcome.

Hugs BD :-*

Thanks for the welcome. I've been on Seroquel, Methergine, Risperidone, and as of last week O2. The Seroquel was mildly effective, but I started having reactions to it. I'm at 8 lpm with a non-concentration mask, but it does a very little bit of good. I've also tried acupuncture, chakra healing, and acupressure, with a bit of limited success. The acupressure is one of the few things that has had any degree of success thus far.

The neurologist I was seeing has referred me to a headache specialist, who actually diagnosed the CH.

WrFoard wrote on May 14^th, 2009 at 5:15pm:

Thanks for the welcome. I've been on Seroquel, Methergine, Risperidone, and as of last week O2. The Seroquel was mildly effective, but I started having reactions to it. I'm at 8 lpm with a non-concentration mask, but it does a very little bit of good. I've also tried acupuncture, chakra healing, and acupressure, with a bit of limited success. The acupressure is one of the few things that has had any degree of success thus far. The neurologist I was seeing has referred me to a headache specialist, who actually diagnosed the CH.

Methergine, a blood-vessel constrictor, is given to prevent or control excessive bleeding following childbirth. It works by causing the uterine muscles to contract, thereby reducing the mother's blood loss.

            Potter

Potter wrote on May 14^th, 2009 at 5:29pm:

Methergine, a blood-vessel constrictor, is given to prevent or control excessive bleeding following childbirth. It works by causing the uterine muscles to contract, thereby reducing the mother's blood loss.             Potter

Yeah, which is why I get very weird looks from my pharmacist every time I refill my prescription. I think the theory is to stop the blood vessel from swelling in the first place. Hasn't done anything useful as far as I can tell.

Welcome .....glad you have found us.

Methergine or Methylergonovine is still being used I see. I used to use Sansert with is a close cousin but not as strong. You should not use it for over 6 mos without a break.

Methylergonovine has been shown to decrease headache frequency and intensity within 1 week of starting therapy.20 This agent is an ergot derivative with vasoconstrictive properties. It is more potent than its parent drug methysergide and, hence, may be used in lower doses (eg, 0.2 mg 3 times daily); as a result it has fewer side effects.20 This agent should be reserved for refractory cases. Because of the possibility of retroperitoneal fibrosis, pleural fibrosis, pulmonary fibrosis, or cardiac fibrosis, use should be limited to no longer than 6 months at a time.


As far as the 02, 8 lpm is not a high enough flow for most people. If you could get a regulator with 15 lpm and a non rebreather mask, you may find that is very effective. :)

Hi and welcome to the board.

I would very much agree with Jimi and that you will not gain much success form 02 at a flow rate of 8lpm. I can personally abort an attack within 5mins using a flow rate if 15lpm and a non rebreather mask. Some members on this forum have to go as high as 25lpm in order to abort an attack. This may be something for you to have a look into as 02 has been very successful for many on this forum..

Lefty..!

Hi and a big Welcome to the mad house, If you find the guy with the key can you please tell him i wan´t out.  [smiley=slowlaugh.gif]
I agree with all the above statements but then again im married so used to agreeing to everything  ;)

Dont worry about not being a big talker, most here ramble on for hours with out taking a breadth, not like me i know when to be quiet, just one word and thats me like a mouse, hardly hear a word, some just go on and on and on and on and on oooh sorry  [smiley=oops.gif]

Mark (small mind, large ........Feet)

not like me i know when to be quiet, just one word and thats me like a mouse, hardly hear a word, some just go on and on and on and on and on oooh sorry  

Oh yeah....quiet as a mouse...that's synonomous with mark! ;D ;D ;D

Joe

I agree - you need a high flow regulator - 8 liters is NOT enough and you have to stay on it too long. The RIGHT mask is ESENTIAL!! Check with the CH.com store - DJ has an Op2tic (or whatever - that's close) mask that works great. But you NEED the right flow with the right mask. (Told you we give classes).  :)

Methergine worked for me thru ONE episode (when I was episodic). My pharacist asked me where his "cigar" was when he gave me the script. (I'm WELL beyond the childbearing years!)  :) But it didn't work for the next one - go figure that one.

Imitrex and cafergot are the drugs of choice around here for aborts (after O2). Lithium, Topamax and Verapimil are the most used preventatives. Check them out on the Medications page. Then talk to your doc about getting on a prevent and get an abort that will work.

Hugs BD :-*