Hello,

My name is Joanne and I am new to this panel, but not new to CH.  I live in Marmora, Ontario and have suffered from CH since 1980 as a young girl.  My pattern has never varied until this year.  Always suffer May to October, usually every other night with a 'pressure' sign just before the cluster. I have never gotten a CH outside of my cluster, which is once a year.   I am relieved to find you all, because it has been frustrating all of my life trying to get people to understand the severity.  Thankfully more literature is becoming known and we're finally being taken seriously.

I have tried surgical procedures, all of the meds known for CH and have had no real success with any other than my 'cocktail' of 150 mg Gravol and 150 mg Demerol and Propranalol prophylaxis.  There has been very little support or understanding from my employers and it is quite frustrating as I'm sure you all feel the same.  I am fortunate to have a supportive husband who knows the signs and is always ready with my 'cocktail' and my roaming around the bedroom.  My new concern is that my pattern is changing and that worries me.  They seem to come on with little or no warning and at any time of the day.  I am afraid to drive or leave the house.  When I get to work (shift work) I just hope to get home before it hits again.  I've never tried to 'cope through it' without medication, but a neurologist this year told me to try to suffer through it, because the Demerol might be allowing it to linger and perhaps it would only last an hour, and 'surely I can cope for an hour'!.  As we all know, there is no coping with this excruciating pain and I am once again frustrated.  My own employer (a hospital!) doesn't seem to have an understanding of CH and thinks it's 'just a headache'.

I am relieved to be apart of your group and would welcome any ideas or suggestions of how you all cope.  I will read your testimonials and maybe something will help.  I have also been told that menopause may be my cure.  Does anyone have an opinion on this?  It would be appreciated.

Joanne H

This Topic was moved here from Getting to Know Ya by Guiseppi.

I'd strongly suggest trying oxygen. I'm a 32 year sufferer and oxygen continues to be my magic bullet in the fight against CH. I feel the tingling in the back of my head, the pressure starts to build, I start huffing 02, 6-8 minutes later I'm pain free. It's a treatment, that because of some recent refinements in HOW we use it, is seeing incredible success rates. The key is to get pure oxygen to your lungs, no exhaled air, no outside air. best accomplished using a non re breather mask and a high flow rate of at LEAST 15 LPM. Next time you get a hit at work give it a shot.

Warning, nasal canulas and rebreather masks are next to worthless, neither gives you the purity or  the volume you need.

Welcome to the board, I moved your post down here so more people would see it and respond! ;)

Joe

I'll echo the suggestion of using oxygen. With it I can get rid of my CHs in around 6-8 minutes with the pain dropping off after a few minutes. There is no way I'd go along with your neurologist's suggestion of riding through it. Clearly he (or she) hasn't got a clue of the level of pain that a CH involves.

You can read up more on the oxygen link on the left. Just make sure you've got a regulator with a high flow rate, at least 15lpm with more being better and a non-rebreather mask.

Imitrex injections are another popular way to abort a CH, with a good tip on their use on the left too to use a lower dose which is still effective.

Energy drinks containing caffeine (a vasoconstrictor) and taurine (calcium channel antagonist (like verapamil)) if drunk when you feel a CH starting can often reduce the intensity and duration.

Being able to stop most CHs from happening and then cutting those that still get through happening makes CHs a lot less controling and letting you control your life.

Also read lots of other posts here as there are endless posts that will give you more and more information about how to treat your CHs.

And if you've questions, just ask!

Yup, what Joe and Mike said. You also mention you've tried "surgical procedures" and "all of the meds" for CHs. I thought I had, too, until I found this site. I also discovered the meds weren't in high enough doses to be effective for CHs. If you don't mind my asking (and if you do, I'll just apologize right now) what were those procedures and meds you mention? Prayers comin' your way for a pf day and night and day and night and day....Blessings! lance

Gravol/dramamine (?) why, do you get nauseated?  Propanalol/Inderol is not commonly used any more (my husband was on it when he was first diagnosed 30 years ago).  There are a lot more/better drugs out there now.  Wow, 150 mg. of Demerol?  that would make me a walking zombie (not a ch'er, but Demerol is the only pain med that I can take).