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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hi!  I'm new.
        
(Message started by: dagger on Nov 30^th, 2004, 8:19pm)

Title: Hi! I'm new.
Post by dagger on Nov 30^th, 2004, 8:19pm

I have been visiting this site for several weeks now and decided to register for message board participation. I first responded to the gentleman from Staten Island, as I was curious about his bad experience with imitrex. I am using it for the first time. I have been a cluster sufferer for 37 years and each cycle gets further apart. I was clean for five and one-half years before the "beast" returned. I discovered oxygen about 12 years ago and while it is extremely helpful, I find that I experience many more attacks than I used to. I typically would get one head-banger in a 24 hour period, but now experience 6-8 during the night. I am on prednisone, but only was prescribed 20 milligrams and haven't felt that it has helped. I use imitrex nasal spray (5mg) when it gets really bad. It helps most of the time but I worry about the daily dose for several weeks and try to get by without it but sometimes it is impossible. My cycles run about 6-10 weeks. The majority of my attacks are at night, so I can still do my job but I am a teacher and the fatigue factor weighs heavily. Thanks for all of the great advice and support I find here.

Title: Re: Hi! I'm new.
Post by LeLimey on Nov 30^th, 2004, 8:37pm

Hello dagger, nice to meet you and sorry you are here :(
The dose of prednisone you are on sounds far too low, if you look at other posts here about pred they all seem to start at a much higher dose and taper down. Most people who take it say it has worked but its still a scary drug so be mindful of the long term effects. Make the decision based on what is right for you!
Alot of people here swear by melatonin for helping with night time attacks, you may want to try that too. The good thing about that is it is available OTC. Different people try different doses so you may need to shuffle around with it for a bit to see how it goes for you.
Good luck with finding what works for you, let us know how you are getting on
Regards
Helen

Title: Re: Hi! I'm new.
Post by lionsound on Nov 30^th, 2004, 9:37pm

Hey dagger,

You really should give that melatonin a go....I know it works well for me.

(I'm not a doc so as with any new med....... be sure to check with yours :))

-lionsound

Title: Re: Hi! I'm new.
Post by E-Double on Nov 30^th, 2004, 9:46pm

on 11/30/04 at 21:37:37, lionsound wrote:

Hey dagger,

You really should give that melatonin a go....I know it works well for me.

(I'm not a doc so as with any new med....... be sure to check with yours :))

-lionsound

I'm not a doc either but ditto "ROAR"....
I'm a teacher as well and would be glad to share war stories with ya.

Hang in there!

E.

Title: Re: Hi! I'm new.
Post by thebbz on Nov 30^th, 2004, 11:39pm

Ya Houdy there,
and throw the nasal spray , no keep it.LOL [smiley=laugh.gif] Injectors work much better for me.
BB

Title: Re: Hi! I'm new.
Post by nani on Dec 1^st, 2004, 9:57am

Hi dagger and welcome. Sorry you have to be here. Check out all the treatment info here and on the OUCH site...lots of helpful stuff. The pred dose does seem low, but I've never done it, so I don't know. Stick around, we're a crazy but supportive bunch. Hope you get some relief soon. [smiley=hug.gif] (I'm a teacher, also)

Title: Re: Hi! I'm new.
Post by becky8 on Dec 1^st, 2004, 11:45am

Hi, You're one of the new unlucky ones, BUT guess what, you are LUCKY to have found this board! So much info and help. Go thru the boards and read as much as you can. Check the the side boards with the OUCH website too. And research as much on your own. You will find so much help here and support. Good Luck!! We will be your new best friends!Any questions will be answered too.

Becky8

Title: Re: Hi! I'm new.
Post by don on Dec 1^st, 2004, 4:36pm

Quote:

I am on prednisone, but only was prescribed 20 milligrams

Is that 20mg per day and how long are you supposed to keep that up?

Title: Re: Hi! I'm new.
Post by Kris_in_SJ on Dec 1^st, 2004, 8:46pm

Hi. Welcome. Sorry you have to be here, but you're in the right place.

I'm with Don on this one. 20mg is really low for a starting dose of Prednisone. Most of us start high at 80 - 100 mg/day and taper down. It tends to squash the cycle a little until our prevents (like Verapamil) kick in. I'd also consider the Imitrex autoinjects. For me - 5 minutes to PF. Melatonin is also great for nightime hits.

If you haven't had a cycle in over 5 yrs., you might find that med treatment has changed a little. I sure did!

Keep posting. Many Hugs,

Kris