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katyscott
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Clusters suck!!
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Cluster headache blog & short film idea
« on: Nov 2nd, 2005, 4:53pm » |
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Hi everyone,
I'm new to this message board, although I've been reading it for a number of years. My hubby is a CH sufferer of 15+ years, and he's just started his worst cycle in several years. He kinda thought they were getting less severe over the years, but as of 3 weeks ago, surprise, guess not.
Anyway, he and I started a blog to help chronicle his experiences with this horrible condition. We've been handwriting stuff in a journal for years but just recently put it all in blog format. Here is the link: http://cluster-headache.blogspot.com/ Since he's in a cycle right now we are both actively posting nearly every day.
Also, we are budding (very newbie) filmmakers and one of the projects I'd like to tackle soon is a short documentary on cluster headaches. I actually have filmed two of his attacks so far -- it's soooooo hard to sit by with a video camera while he's in so much pain, but he wants me to do this too. I really just want to bring more people to an awareness of what these horrible attacks are like -- I really think that anyone who has not had a CH or witnessed someone having one can have absolutely no comprehension of what a CH is like. How can someone go through that level of pain, day after day, and not DIE from it??! (as hubby says repeatedly)
Does anyone think that this is a good idea?? Bad idea??
At any rate, I thought you guys might find the weblog to be of interest. I know that hubby (and I) would appreciate anyone who wanted to read it or even leave a comment or two. I know you guys know how alone we all feel sometimes, dealing with The Monster.
Peace and hugs,
Katy
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marlinsfan
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Re: Cluster headache blog & short film idea
« Reply #1 on: Nov 2nd, 2005, 5:05pm » |
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Katy, welcome. I'm one of those that thinks that any idea is a good one until it doesn't work. So, good idea!
I looked over the list of meds and noticed that your husband is not on the right meds, at least right from what works with most of us. Read here, this has lots of info, I'm sure you've seen it:
http://www.brightok.net/~mnjday/chtherapy.pdf
I personally abort with Oxygen (read oxygen info on the left). It's fast, safe, and cheap, and doesn't trigger rebound headaches. I reach for imitrex when the O2 doesn't do the trick, but mostly it does.
Also, at night, when I'm in cycle I take Melatonin (9 mgs 30 minutes before bedtime). Your husband mentions he gets mostly nighttime hits, so this may help him.
Prednisone is a transitional steroid used while the preventatives ramp up. Has he tried verapamil? It works for many here.
Also, watch his diet. Most of us are triggered by alcohol. Me personally also get hit when I eat chocolate, nuts, tomato, aspartame (the stuff in Equal sweetener), and a few others.
I've had back surgery and have been on Vioxx until it was pulled, then Bextra until that was pulled, and am now on Celebrex. None of these do anything for the cluster headaches.
PF wishes.
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katyscott
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Clusters suck!!
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Re: Cluster headache blog & short film idea
« Reply #3 on: Nov 2nd, 2005, 6:04pm » |
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Thanks for the responses. I just read the "I feel like a bad wife" thread in the Supporters area and feel much better knowing that the things going through my head aren't completely abnormal.
Doc is not on any medication right now, except for the occasional Axert that isn't doing much for him. He doesn't want to be dependent on any kind of drugs if he doesn't have to... he's just one of those people that does not like to take medication except in dire circumtances... but you can see the list of what he's tried despite that. I'd forgotten to put oxygen on the list, however it didn't seem to help very much when he used it during his last cycle. He has severe sleeping disorders on top of the clusters so during nighttime attacks he generally doesn't wake up until it is way too late for any of the drugs he's tried to take effect. So he's kind of been taking the "suffer through it" route for the most part.
However I did print out that CH meds article and I'll take it home tonight and read it. AND I'm going to go check out that short film!!! Thanks for the links!!
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E-Double
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Re: Cluster headache blog & short film idea
« Reply #4 on: Nov 2nd, 2005, 6:13pm » |
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Hey Katy,
I just saw your post on another site.
I commented on your blog regarding oxygen.
Now ya know I'm legit and not someone trying to see somethin'....
Check out this link too....
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1123513751
Regards,
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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katyscott
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Clusters suck!!
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Re: Cluster headache blog & short film idea
« Reply #5 on: Nov 2nd, 2005, 10:33pm » |
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He's tried oxygen on a number of occasions and it really doesn't seem to do much. I know that it works for some people, apparently very well, but as Doc put it this evening, quoting Anne Rice, "The Dark Gift is different for everyone."
So unfortunately he's one of the ones that is less affected by O2.
And I know that the link to the non-rebreather that you sent is supposed to feed you 100% O2 as opposed to the 85% or so you get from regular ones... but I always thought that breathing 100% O2 can be very damaging to your lungs... ??
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E-Double
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Re: Cluster headache blog & short film idea
« Reply #6 on: Nov 2nd, 2005, 10:36pm » |
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The only damamge that can be sustained is if used like a deep sea diver.
Good luck!
It doesn't work for me all th etime anymore either but I am stoked to try the new mask when it comes.
Has he tried Zyprexa as an abortive??
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Heather75
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Re: Cluster headache blog & short film idea
« Reply #7 on: Nov 3rd, 2005, 6:33pm » |
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Hello Katy,
I just wanted to say thank you for putting so much time into your blog and posting all of your notes. There really is alot there.
As a fellow supporter, I don't think any idea you may have could be abnormal. I know that I too felt a big relief once I started reading the other supporter and sufferer messages. One of the best things about CH.com is that you find out you're no longer dealing with this all alone.
I don't think the documentary Unsolved mentioned is finished yet, but I could be wrong. There are only a couple of clips available. But they are fantastic and I can't wait to see the whole thing. The video of Chuck having an attack has been a huge help in explaining to our friends and family what "the beast" looks like and what our lives have been like. To me, if a picture is worth a thousand words, that video is worth a thousand emotions.
My personal opinion of you two making a documentary sounds like a good idea to me. I think the more knowledge that is out there about CH, the better. If it stops someone from saying "take an aspirin", and understanding what is happening to someone they know, all the better.
Wishing you both the best,
Heather
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katyscott
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Clusters suck!!
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Re: Cluster headache blog & short film idea
« Reply #8 on: Nov 4th, 2005, 12:53pm » |
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Hi Heather,
Thanks! It was interesting to see what Justin has done with his film, and also to watch Chuck's attack. I've posted links to both in my personal blog as well, so hopefully some of my friends and family will choose to watch them and gain a better understanding of what it's like. Because, as we all know, it's just incomprehensible to people who have never seen one in action or had one themselves. I think the "take an aspirin" folks mean well but just have no idea. It can be frustrating.
Doc has not had any killer CH in the past couple of days... just your run of the mill 4's and 5's. He's getting hit about twice a day now, which I realize is lucky compared to some of you... but it doesn't feel lucky, you know? Argh.
E-Double, I don't think that he has tried Zyprexa yet. We'll look into that one.
 katy
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