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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Cycles?!? and my story
        
(Message started by: nikozai on May 5^th, 2006, 1:51pm)

Title: Cycles?!? and my story
Post by nikozai on May 5^th, 2006, 1:51pm

I've read alot of information on this site and constantly see people refer to cycles in 3 month long periods. And I think they mean, this ends for a few months at a time.. is that right?!?

How does it end? Do you just happen to end up off a preventative and realize you don't need it all the sudden and they're gone?

I feel like getting off the preventative is like jumping off a bridge at this point.

If this will stop for a few months, I have something to look forward to, that's nice. =]

I've been having these for a month and a half, the "Cluster Traits" page describes my condition perfectly. The haves and don't haves.
Alcohols a trigger, dehydration is a trigger.
Prednizone was working pretty well, I have a 20mg tab scrip. I can't take the first weeks 60mg per day - too high, resting heart rate was over 100bpm.. scary. I ended up taking 40mg a day the first week and everything was fine, stepped down to a single 20mg tab in the morning and in the middle of the night I would wake up with the worst pain of my life .. (it's usually a 10 at night)
So i split the dose, 1/2 a pill morning, 1/2 a pill at night and it worked for the past 3 weeks like that.
Now this past 6 days it isn't as effective. I stepped back up to 40mg a day for 3 days and no change, still get them in the mornings when i wake up, pain between 5-8.
So I'm thinking the next step is Verapamil to allow a break and restart the prednizone cycle.
Sound about right?

I'm still waiting for medical coverage unfortunately, otherwise i would be at the doctor today.

~ Niko

Title: Re: Cycles?!? and my story
Post by nikozai on May 5^th, 2006, 2:17pm

Also wanted to add that I took "Maxalt 10mg" an hour ago as an abortive today since i'm out of imitrex. It's weird, decreased the pain to a 2 for 20 minutes, now it's almost gone but i'm suuuper dizzy and nauseous, but also overly calm, like it's a muscle relaxor (is it?). I feel exhausted too but that's probably not the medications fault.

Title: Re: Cycles?!? and my story
Post by vietvet2tours on May 5^th, 2006, 2:24pm

Oxygen my friend. You gotta get it.

Title: Re: Cycles?!? and my story
Post by Richr8 on May 5^th, 2006, 2:33pm

Welcome! You said,"So I'm thinking the next step is Verapamil to allow a break and restart the prednizone cycle.
Sound about right?"

You should be following your Dr's advice, but Verapamil is a preventive. THe prednisone will break you cycle, for some, until the Verapamil takes over. I do 480mg of Verapamil a day and begin a 60mg Pred taper. Usualyy within 5-10 days my cycle will break but I must continue on the Verapamil for a couple of months or the beast returns. And yes, Potter is right,
GET OXYGEN!" It is a great abortive for many of us with few side effects.

edit for sp

Title: Re: Cycles?!? and my story
Post by Redd715 on May 5^th, 2006, 2:36pm

Prednisone is a transitional med...NOT a preventive, as long term use (more than 12-14 days) can have severe long term side effects.

It must be tapered to minimize side effects while a known preventive such as verapamil/topomax/zonegran or others is getting to a therapudic level in your system.
Verapamil is the long term preventive NOT Prednisone.

An effective abortive med is also in order.

Coverage or not....GET THEE TO A HEADACHE SPECIALIST OR NEURO....

I'm serious here...cumulatively it appears as though you've been on Pred for at least 4 or 5 weeks. Not good

Title: Re: Cycles?!? and my story
Post by floridian on May 5^th, 2006, 3:57pm

My cycles have always been 2 to 3 months, always and only in the summer/fall, with about 9 months pain free. Others have 2 cycles a year (spring-fall or winter-summer). Others have complex and unpredictable cycles. And then there are chronics, the toughest people on the planet.

Triptans make me feel dizzy, weak, and body aches (like flu). When I ride out a headache or 3 (typically early morning), I can go about my day almost normally. But when I took triptans, I was in bed all day. Others take triptans with no side effects, or mild side effects. It all depends on your system.

Title: Re: Cycles?!? and my story
Post by nikozai on May 7^th, 2006, 5:15am

yay =) I'm so happy to hear from you all.

I honestly didn't know Prednizone was so bad for you, I'll be sure to get that Verapamil and Oxygen ASAP. Is Verapamil available as a Generic and how much does it cost? (yeah i would probably pay anything, but I just want to know to plan accordingly.)

I'm a broke kid, This isn't an easy point in life to be disabled by these or pay $120 per office visit to my family doc.

What long term side effect should i be expecting from my 5 weeks of 20mg/day Pred?? Whats the most commonly reported that effects most? Keep in mind i'm an otherwise healthy 25yo.

Title: Re: Cycles?!? and my story
Post by chewy on May 7^th, 2006, 8:04am

Quote:

What long term side effect should i be expecting from my 5 weeks of 20mg/day Pred??

Probably none at all. I have done numerous prednisone tapers and only experiance increased appetite.

Title: Re: Cycles?!? and my story
Post by Kris_in_SJ on May 7^th, 2006, 8:18pm

Verapamil is very inexpensive - especially when you compare it to the cost of other cluster meds. In fact, Verapamil IS the generic name of the drug. Like Rich said, for most of us it takes fairly high doses for a week or so to kick in, but for many of us it works really well - especially when started at the same time as a Prednisone taper.

Please be careful playing around with the Pred dosage. Pred is one med that definitely needs to be monitored by a physician. And, go for that Oxygen!

Hugs and PF Wishes,

Kris

Title: Re: Cycles?!? and my story
Post by nikozai on May 13^th, 2006, 1:02am

Well I didn't make much progress.
The GP I'm seeing is out of town, so his Dr. wife who he runs a practice with won't perscribe me anything different.

This is the same woman who decided to recommend me for MRI while I was trying to get insurance coverage saying "money doesn't matter as much as your health"
1. Pre-existing condition is bad enough, $3000 pre existing medical request, even worse.
2. "Money does matter" - if i can't get health coverage, no neuro-surgeon will see me if the MRI shows something like an unruptured aneurysm - I can't even get treatment!?!

I was very frustrated with her last time. Now, knowing I don't have medical coverage, she suggests I see a Neurologist and won't even perscribe a portable oxygen concentrator.
So I call her suggested neurologist US$550 per visit?!?!?!
How in the world she thinks I can afford that.... man is she just passing the buck. I've been a patient of her husbands for 12 years. I'm going to talk to him when he's back next week. He'll help i'm sure. At least give me imitrex that he's already given me samples of. jeez =\

Very frustrating.
So i'm in pain, my little friend has been around 3 hours now.
Mid-day attacks are rare for me, it's the middle of the night 10's that I wake up to that are the norm.
This one is only a 6 at best, i've been keeping the fever down with ice packs when it spikes. Got some serious sweating goin on. I'm surprised it hasn't stopped yet, usually they're just an hour.

I went on a Kudzu hunt at 5pm when it started to give me some hope for getting through this weekend, couldn't find any. Whole foods, trader joes, called a dozen vitamin and herbal remedy shops - nobody. Very frustrating.
Stubled upon a local wholesaler that can sell me 4:1 concentrated powder for $21.00 per Kilogram. I have a resale license so I might just buy it.

From what I read about Kudzu, it seems most people that aren't on many other medications at the same time, have significant gains off Kudzu alone. The people on a dozen drugs seem to not see a difference. I think there's some hope.

I'm curious what neuro-chemicals Daidzin & Pueraria replace or what they stimulate the production of.
I'm starting to think this is caused by a chemical imbalance / chemical deficiency. It seems that the steroid hyperstimulates production of whatever chemical is lacking and that fixes it entirely.
So my logic tells me that we need only to find out what chemical really needs replacing.

I'm down to 10mg per day of Pred and that's my bare minimum apparently. I didn't have an attack 3 days this week by taking the pred pill at 5pm every day. If I take it in the morning, I have a night attack. If I take it in the afternoon the worst I get is shadows for a few hours mid-day (until todays attack)

I think i'm going to take another 10mg today, because I have 4 pills left, that will get me through to Monday, I can attempt the Kudzu monday and get imitrex from my GP. Maybe he'll even perscribe the Verp and O2 if i'm lucky.