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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> hello from a new member
        
(Message started by: uzeb on Nov 15^th, 2006, 3:12pm)

Title: hello from a new member
Post by uzeb on Nov 15^th, 2006, 3:12pm

My name is Gord. I live in Toronto. Over the last 4 years I've had 3 attacks.

The first one was for 3 weeks, then a month, then 3 months. My doctor diagnosed me with CH. I have not seen a specialist yet, but probably will if I get another attack.

When it hits the pain is pretty well constant without letup. I tend to get the pain isolated in one temple. I usually describe it as a screwdriver stuck in the side of my head. A few weeks into the attack, I sometimes find that the nerves in my scalp and forehead get really sensitive, like a sunburn, which is very weird. Not sure about what that is all about.

Forgive me for rambling here. It's nice to know that this info is being read by those that understand.

I haven't tried a lot of the measures mentioned in this forum to try and abort an attack. Up until now I just pop Tylenol 3s, which tend to dull the pain to a manageable level. The only problem with them is their effectiveness wears off after a while.

I've been trying to figure out what triggers them. Twice it happened while walking outside in the winter, the other while shovelling snow. So it would seem that the cold outside air has something to do with it. This year I'm wearing a hat in the hopes that it will decrease the chances of another attack.

Last winter I had the worst week of my life. During the 3 month attack, I had to go into the hospital for surgery. I was in a lot of pain, not only from the CH, which was in full force, but from the pain from the surgery. I was throwing up constantly, my head was pounding and my blood pressure was through the roof.

The doctors would do nothing for the CH. The morphine they were giving me did nothing. I didn't sleep at all, instead just lying there at night holding my head in the dark with a room full of snoring strangers. It was hell. While recovering at home from the surgery, my CH finally started to ease. Thank God that was over.

It is my mission, as I'm sure it is with most others, to find a means to control this. I'm sure there are cures out there, or even ways to improve the problem. It's just a matter of finding what works for whom.

Thanks for reading.

Title: Re: hello from a new member
Post by marlinsfan on Nov 15^th, 2006, 5:54pm

Hey Gord, welcome to the nuthouse.

In your hunt for triggers, keep a detailed list of what you eat and drink. A drink that triggers an attack will take less than 30 minutes. Food can take up to 2 hours for me. Alcohol is a big trigger for me, and so are a few other foods, but we are all different in this regard.

Also for me, increased activity (i.e: exercising or in your case shoveling snow) will almost always bring an attack when I'm in cycle. When I'm not in cycle, all my triggers dissappear, thankfully.

I'm sure you've seen this, read it and be prepared to discuss with our neuro. Oxygen is very effective abortive for many of us. Melatonin is a very good preventative for me, it helps me control the night attacks.

http://www.brightok.net/~mnjday/chtherapy.pdf

Hang in there and PF wishes.

Title: Re: hello from a new member
Post by RichardN on Nov 15^th, 2006, 6:09pm

Hi Gord & Welcome

Have you taken the "cluster quiz" (link 4th down on left)? Please do and let us know how you do.

Are you saying the pain is constant? Or do you mean to say . . . what we call shadows . . . continuously with distinct seperate attacks?

If it is CH (and we hope it's not), you're definitely in the right place. And if it's not, there's tons of ha info on this board to help guide you and your doc towards a correct diagnosis . . . .you've found the motherlode of ha info . . .. and a great family of folks who are willing to help.

Be Safe, PFDANs

Richard

Title: Re: hello from a new member
Post by Guiseppi on Nov 15^th, 2006, 6:49pm

Don't dwell too much on what starts the cycle itself. It tends to be somewhat random, I'll go two years with nothing, then have an 8 month cycle! the random nature is what makes it so much fun.

As for individual triggers while in cycle, alcohol, sleep deprivation and stress are my biggies. Cold air tends to help me when I get an attackk. In a pinch I put my face in front of my cars AC and hyper ventilate.

You sound episodic, in that you go in and out of cycle. You need to find a preventative, something to hold them at bay while you are in cycle. I use lithium others use verapamil, read the meds link, there are many options and it will take some trial and error.

The you need an abortive, something that stops the bastard once he starts digging his claws into you. I use oxygen, (Read the link on that carefully, used incorrectly, at too low a flow rate or with the wrong set-up it's almost worthless, used correctly it aborts most of mine completely) I also use cafergot and on occasion the imitrex injectables. The bad news is there is no cure yet, the good news is, with a little bit of reading here there's a strong possibility you can manage them and avoid the real head banging slammers. Welcome to the club, hope you find some help here.

Guiseppi

Title: Re: hello from a new member
Post by bothofus on Nov 15^th, 2006, 7:02pm

Hey Gord, Welcome

No help for the headaches while in the hospital?

That sucks................

Doc diagnosed ya with CH, so he knows what they are, why didn't he prescribe something for ya? Even the docs that don't know much about them will prescribe something. Be it helpful or not, but something.

Talk to him again, and try to get, at the very least, some imitrex shots.

Worth their weight in gold. Can be expensive, but with decent insurance, affordable.

Keep us posted,

Carl

Title: Re: hello from a new member
Post by BB on Nov 16^th, 2006, 5:04pm

Just want to say Hi and welcome :)

Let us know how you go with seeing a specialist. Are you in a cycle now? or are you painfree?

Tell us a bit more about your headaches, how many times you get a day, how long does it last etc and we may be able to point out something useful.

Take care and painfree wishes to you.

Annette