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Cluster Headache Help and Support >> Cluster Headache Specific >> The worst weekend ever
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Message started by ReneeM on May 15th, 2011 at 12:13pm

Title: The worst weekend ever
Post by ReneeM on May 15th, 2011 at 12:13pm
I made it up to 11 days cluster free. Then had 3 on Wed, 2 on Thurs and one mild one Friday. But the real fun started Saturday at 16:10.

Between then and now, 24 hours later, I've had a total of 8 demonic attacks. That's the most, by far, I've ever had in such a short time. I usually have 1-3, sometimes 4, and once or twice I've had a whopping 5. But then always a break of at least a day before the next attack. Also, when I have more than one, they come within a few hours, never so many spread out in 24 hours.

I'm on edge now, not knowing what to expect for the rest of my evening, week, ... life.

Well, OK, I suppose none of us really know what to expect for the rest of our lives, but you know what I mean. The demon is constantly changing the game. Last year I was episodic, then went chronic, and now it's starting to feel episodic again.

The demon holds the deck, deals the cards, and writes the rules. And then, it re-writes the rules whenever it sees fit. All we can do is hope we don't get the joker very often.

I have 3 days left on my current contract, which has been a stressful one (only because it's has been very boring, and I find boredom stressful). The really bad clusters started with this contract, and I'm hoping they will end with it. My next contract, starting in a week, promises to be challenging and more exciting. So, I'm hoping that will be my cure. If not, will need to up my Topiramate, and possibly see about altering Batch's Omega3 regimen as well.

Anyway, I knew you would understand.

Thanks for listening. xx Renée

Title: Re: The worst weekend ever
Post by vietvet2tours on May 15th, 2011 at 1:02pm
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Title: Re: The worst weekend ever
Post by Batch on May 15th, 2011 at 5:48pm
Renée,

Put your thinking cap on and try to figure out what you did, ate or drank differently...  Shit happens...  but there's usually a reason if you look for it...

In short...  if you screwed something up...  figure out what... then un-screw it.

Take care,

V/R, Batch

Title: Re: The worst weekend ever
Post by RichardN on May 15th, 2011 at 6:42pm
Renee

  So sorry the beast is hammering you.

  Do your contracts require you to change locations?  Any possibility that your living conditions may be triggering the attacks? . . . just a thought.

  Hope you get a handle on him soon and deny him a few "dance" cards.

    Be Safe,  PFDANs

        Richard

Title: Re: The worst weekend ever
Post by ReneeM on May 16th, 2011 at 2:23am
Thanks Richard and Batch,

I'm lucky enough for both of these contracts to be living from home, which is nice. So life is pretty stable. The only thing that changed recently, is last week I missed two morning doses of my pills. So 1/2 of my Topiramate, 1/2 of my Omega3.  But that was early in the week.

Still, it could account for thing this weekend as it takes time for the body to adjust and the drugs to get back into the system. So I'm counting this as a bad blip on the radar.

If that was the cause, lesson learned.

xx Renée

Title: Re: The worst weekend ever
Post by wimsey1 on May 16th, 2011 at 7:47am
I'm less sanguine that there is always a reason why our CHs behave the way they do, but I have also paid the price when I have forgotten to take a round of meds. Maybe it ought not be that way but there ya' go.  I might also begin to evaluate a med switch if your cycle continues to be out of control. I should think a good neuro would be willing to assist in switching to a new a med, or adding one, to see how it might help. Just some thoughts. And we do understand. Blessings. lance

Title: Re: The worst weekend ever
Post by ReneeM on May 16th, 2011 at 8:37am
Hi Lance,

I think I'm a lot like you. In fact, I was going to go off on one in my earlier post, but was running late for work and was probably a bit emotional at the time. Not the best frame of mind to write a response in.

I've mentioned several times that I have nearly daily headaches, migraines AND clusters. I also have this really wonderful best friend in my life, Ezri. Ezri keeps me sane and grounded a lot of the time. But also, she is the type to always want to link an effect to a cause.

So every headache, every migraine, every cluster, has to have a trigger. What did I eat, I drank too much coke, it's the weather, there's a high pressure zone coming in, everyone at work has headaches today, you stayed up too late, were you drinking last night...... Sometimes I just want to scream!!

You know, over the years I have pretty much identified my triggers. Weather isn't one of them. Nor is alcohol, coke, cheese, chocolate, food, sex.... Cold is, sudden unexpected cold. Bright light is. Stress, boredom, strong smells. Perhaps one or two other things that don't come to mind at the moment. But I am done with the game of second guessing everything I do or didn't do.

OK, clearly missing my morning meds was a mistake. Missing the Topirmate made me slightly dizzy for a couple days, that should have been a clue for a start. So yeah, could have caused the clusters. But, could just as likely be the demon changing the game and the meds no longer working.

So, just gonna wait and see what happens. Not going to rush off and change anything. My contract changes next week, and that may alter things as I know for a fact stress impacts my head.

Something I've learned from the computer world. Make one change at a time. See what it does, then make another change. So, will see what changing contracts does before I go changing meds at the same time. Take things slow, be methodical, there's no rush.

Renée

Title: Re: The worst weekend ever
Post by glenn shuart on May 30th, 2011 at 5:10pm
why does my imitrex keep my headaches away for an hour and a half

Title: Re: The worst weekend ever
Post by Guiseppi on May 30th, 2011 at 7:49pm
First, welcome to the board Glenn, hard to answer your question without a lot more info from you! ;) Is it oral, injectable or nasal spray form of imitrex? Do you have a prevent med you're using? Have you tried oxygen? When you get a chance, give us an overview of your meds, treatment plen etc. Maybe we can give you some suggestions to take back to your neuro.

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Read this link and discuss it with your doc, if you're not already using oxygen it should be your first line abortive. Welcome to the board, hope we can help you a bit.

Joe

Title: Re: The worst weekend ever
Post by Brew on May 30th, 2011 at 7:49pm

glenn shuart wrote on May 30th, 2011 at 5:10pm:
why does my imitrex keep my headaches away for an hour and a half

Because it is the most effective, yet shortest lasting triptan.

Title: Re: The worst weekend ever
Post by glenn shuart on Jun 1st, 2011 at 9:20pm
well my initrex is injectable and yes i do take oxygen also steroids but they still keep coming but if you know of some thing that worked for you or someone you know please let me know thank you.

Title: Re: The worst weekend ever
Post by Brew on Jun 1st, 2011 at 10:17pm
Here's what has worked for me and a few others around here:

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