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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> Newbie to the board w/ question
        
(Message started by: marlin on Nov 15^th, 2004, 6:50pm)

Title: Newbie to the board w/ question
Post by marlin on Nov 15^th, 2004, 6:50pm

New to the board but not to clusters.

I've tried lots and had luck with very few meds. Fortunately the clusters are getting further apart and the individual events don't seem quite as excruciating.

I've had good luck with imitrex, remarkable really. What I would have done for a shot od this stuff 20 years ago. Been on it 8+ years as needed. My last cluster period was 2-1/2 yrs ago and lasted about 3 weeks, 1-2 headaches/day. I thought they might be gone but 2 weeks ago I started up again -- Pretty bad this time. Imitrex works and I stockpiled them for a year after the last cluster period. Problem is many are expired. I take em anyway but they are noticably weaker. I have a new prescription that gives me 4 refills(8 shots)/mo. Not enough as I seem to be using 2-3 shots/day. I'll be stocking up again.

O2 helps sometimes but normally only delays the onset by an hour or 2.

I've been on verapimil (sp), lithium and others with no luck. I hate to take this stuff all the time when my headaches go into remission for years. My doc prescribed prednisone this time. He said after about a week the headaches should fade away. Took my first 3 pills today.

So, Anyone had luck w/ prednisone?

Title: Re: Newbie to the board w/ question
Post by unsolved1 on Nov 15^th, 2004, 7:12pm

Prednisone is usually very effective for clusters. You should only take it for a short period and possibly wean off of it. Ask your doc lots of questions about this med. You may also need to take something to protect your stomache

I've taken scores of outdated Imitrex and I've never noticed it being any less effective.

Unsolved

Title: Re: Newbie to the board w/ question
Post by marlin on Nov 15^th, 2004, 7:26pm

Man, that was quick. Thanks. You know, I live in tucson and I may have left he A/C off in my house for periods during the summer? That may have something to do with the weaker expired doses??

Don't get me wrong - I still use em.

I wonder if there's an exchange where we could put almost expired doses into some pool and we can expect some back when we need them. I can get 8 doses/mo until I die or go off this insurance...

Title: Re: Newbie to the board w/ question
Post by Bob_Johnson on Nov 15^th, 2004, 7:36pm

Pred. is usually effective in breaking a cycle quickly but--and this is true with Verap. also--the dose needed for any one individual varies widely. So don't be discouraged if what you are using doesn't work. You may have to start another round at a higher dose. It's one of the frustrations of life with clusters.

Pred. stating dose ranges from 10 to 100mg.
The dosing of Verap. may have to go upwards of 700mg+.

Title: Re: Newbie to the board w/ question
Post by Kris_in_SJ on Nov 15^th, 2004, 8:36pm

There are many ways to "dispose" of unwanted and/or un-needed Imitrex. Watch the board ... we have many here who have no insurance and can't afford the meds they need. The PM system is good. Keep getting your scripts filled.

And, yes ... I've found a Prednisone taper to work very well for me. Keeps the HA's within reason until the Verapamil kicks in.

Hugs,

Kris

Title: Re: Newbie to the board w/ question
Post by marlin on Nov 15^th, 2004, 10:53pm

This is the pred dosage recommended by my doc.

4 days @60mg
4 days @40mg
4 days @20mg

He said take the full course. Sound reasonable?

Title: Re: Newbie to the board w/ question
Post by unsolved1 on Nov 15^th, 2004, 11:05pm

Sounds reasonable to me.

Just remember: DO NOT abruptly stop taking the Prednisone. You need to wean off of it.

Unsolved

Title: Re: Newbie to the board w/ question
Post by marlin on Nov 15^th, 2004, 11:18pm

Thanks. Sounds like you're talking from the position of experience.

Wish me luck.

Title: Re: Newbie to the board w/ question
Post by Mr. Happy on Nov 15^th, 2004, 11:47pm

on 11/15/04 at 23:18:16, marlin wrote:

Thanks. Sounds like you're talking from the position of experience.

Man, if only you _knew_ how much experience the above folks can vouch for.

on 11/15/04 at 23:18:16, marlin wrote:

Wish me luck.

Luck has nothing to do with it. Take as directed works for me.

on 11/15/04 at 23:18:16, marlin wrote:

O2 helps sometimes but normally only delays the onset by an hour or 2.

That's the thing with O2. Sometimes, you damn near need to live with the mask on your face. Functional, but highly inconvenient. It's almost a committment kind of thing. O2 is great stuff, but it's sure no cure all.

What the heck. Good luck,
RJ

Title: Re: Newbie to the board w/ question
Post by BobG on Nov 16^th, 2004, 3:37am

Quote:

Imitrex works and I stockpiled them for a year after the last cluster period. Problem is many are expired. I take em anyway but they are noticably weaker. I have a new prescription that gives me 4 refills(8 shots)/mo. Not enough as I seem to be using 2-3 shots/day. I'll be stocking up again.

On the left side of your screen there is a button ‘imitrex tip’. It is tell you how to stretch the 6mg shot into 2 or 3 shots. Big saving on money and your heart.

Quote:

O2 helps sometimes but normally only delays the onset by an hour or 2.

Are you using a NON-rebreather mask? And at a flow rate of 12-15 lpm? Check the 'oxygen info' button on the left side of your screen

Quote:

I've been on verapimil (sp), lithium and others with no luck.

How much verapimil are you taking? Many folks are on high doses, as much as 800mg a day.

Quote:

I hate to take this stuff all the time when my headaches go into remission for years.

If, when you stop taking it, the pain does not come back I see no reason to continue on it.

I am not a doctor and the above is only my opinion.

Title: Re: Newbie to the board w/ question
Post by sandie99 on Nov 16^th, 2004, 5:37am

Marlin,

I had prednisone last fall and in the beginning it did give my CH free days, but I got regular HAs and lots of other side effects like back ache, insomnia and stomache ache, few to mention. And then CHs came back. So it didn't exactly help me.

I hope it works for you, though.

sandie99

Title: Re: Newbie to the board w/ question
Post by marlin on Nov 16^th, 2004, 10:16am

Well, First HA-free night in 3 weeks. The night before I had 3 wake-up calls with a searing branding iron singeing the back of my right eyeball...

OK this AM too. Coincidence? Probably. I'm closing in on the traditional tail end of my cycle.

But that won't stop me from finishing off the entire bottle of pills. Stomache seems OK. No other side effects?

Got the imitrex cocked and ready just the same...

Title: Re: Newbie to the board w/ question
Post by Bob P on Nov 16^th, 2004, 10:26am

Pred will stop the attacks for me instantly. Trouble is, when I taper down to 20/30mg the attacks come back.

Title: Re: Newbie to the board w/ question
Post by unsolved1 on Nov 16^th, 2004, 11:53am

on 11/16/04 at 10:26:59, Bob P wrote:

Pred will stop the attacks for me instantly. Trouble is, when I taper down to 20/30mg the attacks come back.

The same happens to me.

Unsolved

Title: Re: Newbie to the board w/ question
Post by marlin on Nov 17^th, 2004, 4:49pm

Progress Report:

Haven't had an attack since I took the prednisone - some mild shadows last night tho. Was getting 2-3/day and reaching for the Imitrex. Haven't started tapering yet.

Hey, does pred affect sleep? I didn't sleep too well last night??

Title: Re: Newbie to the board w/ question
Post by marlin on Nov 18^th, 2004, 11:23am

Well, I'd call it a progess report but it's not really progress when you back up...

Last night, on my weekly business trip, I took 2 Tylenol PMs before hitting the pillow. 3:45A woke up with a hint of an oncoming train and no O2 around to derail it. 4:00A stumbled thru the hotel room looking for a washcloth to wet down and rest on my neck. That was smart! Within another 10 minutes I was ripping my suitcase apart frantically going for the trex. A 6mg shot and back to sleep in less than 10 min.

So, haven't even started the taper and already got slammed. Doesn't look promising...

Title: Re: Newbie to the board w/ question
Post by Kris_in_SJ on Nov 18^th, 2004, 7:48pm

Pred is a good med and CAN break a cycle for some people. Me, myself? I depend on Verapamil in high doses to actually prevent headaches. The Pred usually helps until the Verapamil kicks in. Regardless, until my cycle is truly over, I still need Trex on occasion. And yes, Prednisone can cause some insomnia. Melatonin is my answer to that. I guess this is why the experts say that clusters require a "polypharmacy" approach.

Hang in There!

Kris

Title: Re: Newbie to the board w/ question
Post by marlin on Nov 22^nd, 2004, 9:06am

Really impressive progress since last Wed. Head's clear, no wake calls or even shadows. Might be done with this cycle. Went to parties Fri & Sat, no spirits but was in good spirits - even though everyone else was drinkin? Last day on 40mg pred, then down to 20mg tomorrow. If this holds I'm good!

Title: Re: Newbie to the board w/ question
Post by don on Nov 22^nd, 2004, 11:03am

Quote:

The Pred usually helps until the Verapamil kicks in.

That is the key.

I will normally start the preventative 1 week before begining the pred. taper.

Title: my cycles last Re: Newbie to the board w/ question
Post by marlin on Nov 22^nd, 2004, 2:23pm

I went through this pred last cycle and I was convinced that the cycle ended because my cycles last 4-6 weeks anyhow and it was simply a coincidence. No relapse. I'm hoping for a repeat.

wish me luck.

Title: Re: Newbie to the board w/ question
Post by RobP on Dec 1^st, 2004, 12:03am

I have just now tried Imitrex for the first time in 7 years of CH's. It is in pill form and works in 15-20 mins. It is the greatest thing I have ever got my hands on considering BC powder was the only thing I have taken in 7 years. It is in pill form and I guess I will stick with it as long as it is working. Are any of you guys taking it more than 2 times in 24 hours? I see it says not to so I have been following instructions, ti just sucks when I get 3 a day.
Also, is Prednisone a good drug to stop the CH's from happening? What are the side effects of Prednisone? I see a lot of preventative meds but that one comes up a bunch.
Rob

Title: Re: Newbie to the board w/ question
Post by marlin on Dec 1^st, 2004, 7:59pm

If the pill form of imitrex works for you in 20min the shot will probably take less than 1min. That's 19 minutes less you have to spend fighting with the beast. I seriously recommend giving the trex shot a try. A little head rush and a bit of a creepy feeling but remarkable results. The pill doesn't do shit for me.

The was I used prednisone was to break an active cycle and it seems to have worked. Stopped my CHs that day. I know long term prednisone use will really screw you up. I doubt any doctor would suggest it as a preventative.

It sucks getting CHs. Just be thankful this isn't 20 years ago when no drugs helped and hardly anyone even knew what they were.