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        Cluster Headache Help and Support >> Cluster Headache Specific >> Has this happend to you?
        
(Message started by: bearbadger on Mar 27^th, 2007, 11:42am)

Title: Has this happend to you?
Post by bearbadger on Mar 27^th, 2007, 11:42am

Ok. I've been away from the board for a long time - almost 2 years I think. Good news is because I haven't had any clusters and life takes over. Unfortunately I may be back.

Quick background - I've had clusters since I was about 17 (I'm 37 now) I get them every couple of years it seems and a cycle usually lasts about 2 weeks with 2-5 per day. I was dx quickly because my mom also suffered from them. (They stopped for her at menopause.)

In the past I took Cafergot every day during a cycle and it basically worked. The last cycle I had it no longer worked. By the time I got to the dr the cycle had ended and he suggested that the next time we try O2. I'm hesitant because my mom tried it and it didn't work for her but that was many years ago. And I have no idea how to do it.

The thing is, I had a headache Sat night that seemed in every way to be a cluster. It was on my left side, in my eye, my eye felt and looked droopy, my nose was runny, etc. It wasn't a bad one though. I could even talk during it and jsut sat there with an ice pack (a must for me)

I haven't had another one yet but I have the feeling that I always have during a cycle. My temple is tender and there is a dull background headache on and off. I feel nausus on and off. It feels like one might come at any moment but it hasn't. My doctor is supposed to be calling today and I'm wondering if I should go ahead and get the O2 or wait to see if I really am in a cycle.

So I guess my question is, has anyone ever thought they were starting a cycle and then didn't? Do the cycles sometimes change? Does the pain level change?

Any advice is appreciated.

Lisa

Title: Re: Has this happend to you?
Post by Guiseppi on Mar 27^th, 2007, 11:54am

GET THE 02! You need to use a non re breather mask, at a high flow rate, up to 15 LPM. It must be started at the first sign of a headache. It aborts the majority of mine within 6-8 minutes.

My cycles last longer then yours so I use a preventatitve, also, lithium. Funny you use cafergot, I use it to back up my oxygen but almost no one else uses it anymore! As far as predicting what your cycles will do that'll just frustrate you. My cycles vary in length, intensity, and the remissions get longer and shorter with no rhyme or reason.

So a STRONG vote for oxygen and hoping you have another short cycle!

Guiseppi

Title: Re: Has this happend to you?
Post by Gator on Mar 27^th, 2007, 12:55pm

GET THE OXYGEN and any other abortives! Better to have it and not need it than to need it and not have it.

Probably not much you can do in the preventative department with so short a cycle, but definitely grab the aborts.

Title: Re: Has this happend to you?
Post by JeffB on Mar 27^th, 2007, 12:58pm

Not for me. A cycle is a cycle that lasts 6-8 weeks. Never had a rogue hit before. It's nice to see that you have returned but maybe you should think about checking in when not in cycle. I'm sure there's people who could use an extra ear to vent to. ;)

Title: Re: Has this happend to you?
Post by Rosybabe on Mar 28^th, 2007, 3:55pm

yeah I use cafergot too and sometimes works for me but I used mostly Zomig as an abortive. You have to have the O2 around just in case. I am happy to hear you only get a 2 weeks cycle, I would love to get just that!! My cycle last about 12 to 15 weeks and comes back every year by spring time...Jeff is right..you should hang here not only when in cycle but on PF time too..

My cycle finished 2 weks ago and here I am!! ;;D

Title: Re: Has this happend to you?
Post by Samiam on Mar 28^th, 2007, 5:44pm

I truly through that I was cured isn't that a joke....shame on me. But really I did I've had them now since I have been 17 and I didn't skip years until the last 10 years and in that time I have had them 94-98-2002-2007 before this I would cycle every year but not to the letter.

When I was younger I would cycle every May, June, July, Aug from the time I was 17 to the time I was 27. So I guess I'm grateful that they are getting shorter but it just goes to show you that there is nothing textbook about this. But I get more a day and they are hitting harder.

As for the O2....I was given O2 by Dr. Steven Silberstein who is a pretty well known cluster doctor but back then he gave it to me using the nasal thing and at a low lpm rate and it never worked so I gave up. It wasn't until this year that I re tried it with a full face mask at 15 lpm rate has it worked wonders.

So I guess what I'm trying to say is try try and re try again what didn't work one year might just work this time and if you think your getting hits get everything you need. You don't need to use it but it's better to be prepared then to do battle without anything. I know I had to do it this time for almost 2 weeks with nothing.

And I'm another one when feeling good I get tired up with the kids and family I got to remember that there are others that are hurting and need me also.

Sami

Title: Re: Has this happend to you?
Post by BarbaraD on Mar 29^th, 2007, 7:17am

Who don't use Cafergot anymore. I swear by it.

Get the O2 (15 liter with non-rebreather mask).

What don't work one time might work wonders the next. Get some prevents and maybe they'll help keep the cycle in check. (Verap and Lithium have worked for a lot here - I use Topamax, but I'm chronic and it's the only thing that works for me). Maybe a pred taper.

At the onset try a Red Bull (chug-a-lug it - don't be delicate with it) Coffee will sometimes abort a shadow for me.

After two years you need to do some reading -- some things have changed - we've come up with some new things (the Red Bull is new I think in the last two years). don't bother with the SinusBusters (that's a snake oil salesman thingy)

Geezz, you're just gonna have to read to catch up. I'm OLD = I can't remember what I had for breakfast yesterday morning... Have I told you about my grandson Caleb? If not let me know and I'll catch you up on him.. :D That I can remember. ;;D

Hugs BD