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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Old timer says Hi
        
(Message started by: olepi on Jan 23^rd, 2007, 2:34pm)

Title: Old timer says Hi
Post by olepi on Jan 23^rd, 2007, 2:34pm

Hi all, I've been having episodic clusters for about 35 years so far. I get episodic headaches about every 18 months. They last almost exactly three weeks each bout, and follow a regular procession:
- 1st week -- getting headaches every 4-6 hours, lasts 1 hr each, can still function
- 2nd week -- still getting them, hard to sleep more than a couple of hours at a time. Missing work a lot.
- 3rd week -- 4-6 K7-9's a day, I stay in my bathrobe and hope for the hour or two each day that I feel half ok.

I've tried a few things, but nothing really works. My only hope is that they only last 3 weeks, and I can put up with almost anything for 3 weeks. My dentist once remarked that I had a high tolerance for pain. heh, yeah :)

The last two bouts are on my right side, whereas all the others were on the left side. The right side ones are not as bad. However, smoking, beer, etc, is instant death. My heart goes out to all of you who have them.

Bill P

Title: Re: Old timer says Hi
Post by vietvet2tours on Jan 23^rd, 2007, 2:41pm

Oxygen

Title: Re: Old timer says Hi
Post by swimchica623 on Jan 23^rd, 2007, 3:04pm

Hi there. Sorry you had to come here but hope you have fun anyway. Are you on any medicine? What have you tried to abort? Have you tried o2? If you tried it once without success, try, try again!! It took me a little bit of time to get the hang of it, and a little more time to get the prescription right (they got the wrong regulator to me) but thanks to having a good neurologist and the board (specailly Pete, Paul, and Jonny) we got it all figured out and now its my lifeline! Last night I also (unfortunately?) discovered that Red Bull works well too! Its absolutely disgusting to chug and I was burpy afterwards, but it worked along with my trip. of choice. Are you on verapamil as a preventative? That's usually the first-line type drug, its working well for me in addition to topamax but a lot of people can't tolerate it. Lots of stuff for you to try though is my bottom line. Hope you can find something to bring some relief if you haven't tried anything yet. ESPECIALLY O2! With a clustermasx.
Did your near-annually cycle just start again, is that what brought you here? I hope not, and that you are enjoying many PF days. :-)
Lisa

Title: Re: Old timer says Hi
Post by seasonalboomer on Jan 23^rd, 2007, 3:07pm

Hey bill,

Welcome. You shouldn't have to have your life disrupted to the extent that it is by CH. I was once as you were, tried a few things to no avail and decided I could gut out whatever came.

Then I spent some time here and learned about a range of weapons and have built an arsenal that allows me to go into a cluster headache cycle with confidence and minimal disruption.

Have you tried oxygen at a flow rate of 10-15 lpm and a good non-rebreather mask? I am also episodic and for me oxygen takes care of 80% or more of the hits I get in less than 10 minutes.

Have you tried injectable Imitrex? Imitrex takes care of the rest, if the O2 doesn't work in 5 minutes.

I'm awfully lucky -- but it started with getting past the idea that I've tried it all and nothing works. It started with listening to a couple folks basically call me out and say, if you aren't going to try anything then whats the point of being here. Put up a fight. And I did, and it changed my life.

Scott

Title: Re: Old timer says Hi
Post by LeLimey on Jan 23^rd, 2007, 3:33pm

Hey Bill!
I'm not going to repeat the questions already asked, I'll wait to see your answers but I just wanted to welcome you to the board :)
Helen

Title: Re: Old timer says Hi
Post by Linda_Howell on Jan 23^rd, 2007, 4:23pm

I'd like to welcome you also. I have never heard that right side or left side makes any difference in the pain, however.

Linda

Title: Re: Old timer says Hi
Post by olepi on Jan 23^rd, 2007, 5:39pm

Thanks for the quick responses :) I've tried several medicines and O2. The problem is waking up at night with a full blown one. Nothing affects it then. The Motorola nurses actually knew about CH and gave me O2 at work one time, I was surprised. I usually depend on caffeine, capcisin, cold presses, and aspirin. Prednizone was horrible. I just started getting them again and have no time to go to a neurologist.

I usually use this example to describe what it feels like to people who don't know: Imagine you hit your thumb with a hammer, are you just going to stand there or are you going to jump around? Oh, and you hit your thumb 4 times a day for 3 weeks.

Title: Re: Old timer says Hi
Post by Barry_T_Coles on Jan 23^rd, 2007, 6:07pm

Hi Billhttp://bestsmileys.com/waving/3.gif Welcome aboard.

Title: Re: Old timer says Hi
Post by Kevin_M on Jan 30^th, 2007, 9:00am

on 01/23/07 at 17:39:19, olepi wrote:

I've tried several medicines and O2. The problem is waking up at night with a full blown one. Nothing affects it then.

Before I found an effective preventative or oxygen, waking to a fast ramping hit several times a night with only n/s trex and ice would be 40+ minutes of hell each time. Using a preventative has bought me several minutes longer to beat it back down earlier and oxygen assists well before even getting to the highest Kips within a shorter time.

Quote:

3rd week -- 4-6 K7-9's a day, I stay in my bathrobe and hope for the hour or two each day that I feel half ok

I know you mention 3 weeks to endure but a preventative might help by this third week, preventing the above, and then tapering down after that, while also possibly helping if the episode should linger longer than 3 weeks in the future. Just an option to explore though.

Title: Re: Old timer says Hi
Post by LeLimey on Jan 30^th, 2007, 9:47am

With cycles of "only" three weeks I'd be more than reluctant to recommend use of preventatives especially given the amount of aecdotal evidence suggesting they MAY lengthen cycles.

The only "preventative" I'd suggest would be a prednisone taper (for other people reading's information - I know you didn't like pred) but in all honesty my gut instinct would be if you CAN get through it with just abortives then that is your best bet - unless things change of course.

If caffeine helps then you may want to try Red Bull or generic equivalents, I have to say its been very effective for me IF taken soon enough but I'll also tell you now for nothing that it tastes bloody awful!

I don't know if you use triptans but I'll mention them anyway, if not for your benefit then for others.

Imitrex injections are the fastest acting abortive but only have a half life of about 2 hours which means if you are having multiple hits a day you can be potentially scuppered as you can only use two injections per day.

Zomig nasal sprays take slightly longer to kick in but have a half life of up to 12 hours and you can use up to 3 of those in 24 hours (as stated by Prof Goadsby at the OUCH UK National Conference in 2004)

Frovatriptan is a tablet so flippin' useless if used to try and abort a hit as it can take up to 2 hours to kick in however, it does have a half life o up to 26 hours which means that if you use it two hours before a hit is due (if you have regular hits) ie - use it as a preventative - it can block your attacks which can be very useful if you need a nights sleep or want to do your best to get a hit free day for work or a special event. I've found I can't use Frova more than 3 days in a row or it bites back and my hits are harder or higher level but equally some people have used it day in, day out for weeks on end. We all vary in our reactions.

Just some things that I hope may help, or info at least to get you armed and ready for your next cycle!

Regards
Helen