Good morning everyone. My name is Tom but Grumpy serves me best about now. I'm impressed with this website. I wish I would have had something like this about thirty years ago. I haven't had an attack in almost fifteen years. I actually thought I might be done with them. I was wrong. Hopefully I'm going to find some new treatment modalities here and deal with this and move on. In the meantime its nice to meet you all. I'm sorry all of us are afflicted with this malady but as they say "That which does not kill me, makes me stronger

Welcome aboard Grumpy :)  I certainly can understand that state of mind.  Glad you were able to find this place, there are many different options available now, some traditional, some not so traditional, but by far the best option for most has been getting home Oxygen and aborting attacks that way.

The oxygen page explains the process that has been found to be most effective.

I suggest you read as much as you possibly can, and ask any questions you might have.

What meds have you used in the past to do battle with the beast?

Cat

Welcome Grumpy.  I'm sorry for the reason that you're here, but glad that you found us.

Hey Tom - welcome aboard. Lots has developed in 15 years, hope you find something here that helps you prevent attacks and abort the ones that manage to break through.

Christy

Hi Tom, as it has been said, there is so much more knowledge available about CH on this site.

You will find, I hope, what works for you.

O2 rocks!

All the best, Iddy

Welcome aboard, Tom.  At the risk of sounding like a Greek chorus I'll also say Oxygen.  Don't let them talk you into anything lower than 15 lpm, and push for at least 25.  If you don't need it all you can always turn it down, but I've found 25 lpm will kick mine out in 5-8 mins as opposed to 15-20 at 15 lpm.

Jerry

Welcome Tom but I'm sorry you're having to deal with this horror after so long. I'm a bit like you as I haven't had anything but a flicker for 18 years. I have no illusions about them though. I know they are known to return. I was dumbfounded when I joined here at all the information and varieties of CH there are. Let us know how you're doing and stick around.

The only thing I can add is a technique that I used for many years:

Dr. Wright’s Circulatory Technique
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

I hope this technique is helpful and I wish you the best of luck

Charlie      

Thank you all for the well wishes and the tips.I will try them all. I've dealt with these headaches for thirty years and I don't discount anything. I've tried everything from hypnosis to accupressure.A few of the drugs I've been on are sansert,any number of antihstamines and they don't work, amytryptiline, tenormin, verapamil and ergotrate preparations as well as imitrex. I will try the oxygen. That should be easy ,I'm an R.N. and work in a hospital. I have access to it. The verapamil has worked best and using imitrex for the very severe attacks although the imitrex can give me a rebound headache that's even worse. I'm back on the verapamil and added melatonin to the mix and I'm already seeing good results after only 56 hours into the cycle.

I hear ya when you say you wished this place was here 30 years ago.  DJ started this site to help others in 1998, which is when I found it. This site has not only saved lives LITERALLY...but has proven to help others find enough information and support as to totally transform us from pain-ridden to hopeful.  Depressed to helping others.  Being alone to being part of a family that understands.

I hope you stick around and I hope that one day soon after you've been here awhile and see what I'm talking about,  that you'll change your name to "smiley", "happy", or one of the other snow white dwarfs with a happier name.   ;)

Linda. who's always been just Linda except when certain people remind me that I mis-typed my name several years ago as Luinda and will never let me forget it.   ;D  and yes, we laugh a lot around here.  Especially at ourselves.

Dearest Luinda,

As long as we have ourselves we really don't need anything else to laugh at! ;D [smiley=crackup.gif] [smiley=hug.gif]

Jerry

This sudden and unexpected return of my old friend the cluster headache really made me sit and ponder my entire thirty year odyssey with these things. The funniest thing I can think of is the look on people's faces when you try to explain these headaches to them. Its like this boss, one minute I'm fine and five minutes later I'm on the floor and my eye is swollen shut and tearing, snot is running out of my nose and I'm gripping my head, banging it on the ground and praying for someone to kill me because it hurts to much for me to do it myself. Thirty minutes later I'm fine again. Yea boss, it happens like three to eight times a day.

Welcome to the club....yeah the old ergotamines...did you do the little green ones that disolved under your tongue??? (made me wanna barf but in the early 80's it was state of the art!)

Just a tip on the 02....to work as an abortive your lungs must get ONLY 02...no outside air, no exhaled air. I use a demand regulator, others use a non re breather mask at a high flow rate, 15-25 lpm. Nasal canulas, re breather masks, rarely work as they allow too much outside air in.

31 year sufferer here, oxygen changed my outlook on life! I can abort in 6-8 minutes now, beats the hell outta the old 90 minute runs with the 2 day headache hangover that followed!

Welcome home Grumpy! ;)

Joe

Knowing three RN's, I'm willing to bet that you've been taught that 100% O2 at high flow rates is bad.

Please read up on the current thinking and experience with very high flow for short durations of 15 minutes or less. You will find that with otherwise healthy lungs, there are no downsides to hyper ventilating on O2.

For me, the magic occurs at 25-45 lpm for 3-6 minutes. Many people get stunning results at 8-15 lpm, but O2 is not effective for me under 25 lpm.

Marc

Hey Grumpy, wanted to say a happy belated Grumpy's Day to you.  Hope you enjoyed the day(yesterday) made just for someone like you.  lol.  Yes it is an official day to celebrate.  Dont know who comes up with things like this but thought of you.

My Father suffered from these as well. He was actually one of Dr Horton's patients in the 1950's. He spent several weeks at the Mayo clinic and DHE was his salvation. The first relief I ever got from this abomination was from Sansert. I've also gotten relief and ended cycles with Tenormin, another beta blocker. I am an R.N. and I discovered some  years ago that oxygen would abort a headache. High flow 02 for long periods of time does have some consequences, especially if you're a newborn. We're not on it for long periods so tell your R.N. friends to stick it. They obviously don't know what these headaches feel like. The verapamil does work for me but it takes quite awhile to end a cycle. I was reading some information here about Vitamin D and I've added that to the regimine. I have severe night time hits with these and the Melatonin really hasn't helped that much. I have severe anxiety about going to bed because of them. The melatonin has helped with that.

Welcome Tom !!!

You will find this place full of people who understand the problem and bend over backwards to help you.
Cheers, Dave