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Topic: hello from Becca (Read 853 times) |
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Becca
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hello from Becca
« on: Feb 19th, 2002, 8:48pm » |
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Greetings all,
I saw something about a "medical treatment plan" for CH mentioned someplace in my wanderings through this space, but have lost the reference now. Seems that a CHer's doc had written up the protocall for the treatment of the person's cluster attacks in the event that he or she needed to visit an ER or a doctor unfamiliar with the person's history. I don't know that that would get anyone through the ER doors faster, but it still seems like a useful document to have. (maybe  ) I hope we can get my husband's doctor to work with us in setting up a protocall for him. I think we might be on the edge of one of his episodic periods of CH - shadows and jabs - We are both a little afraid to go to sleep lately!
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Margi
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Re: hello from Becca
« Reply #1 on: Feb 19th, 2002, 9:06pm » |
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Hi Becca
Sorry to hear your hubby may be going into cycle. That's a scary time. I'm going to try to move your post up to the General Posting area, because I'm not sure how to answer your question. If it doesn't work, I'm going to copy and paste it there manually. We'll find an answer for you, one way or another.
Hang in there,
Margi
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Ted
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Re: hello from Becca
« Reply #2 on: Feb 19th, 2002, 9:40pm » |
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There's a form at this address. It's from About's Site and for clusterheads care at emergency rooms. It might be a good idea to remove the word "migraine" in the section that lists the meds and put in "cluster headaches." It also might be a good idea to change the definition in the very begining so it doesn't claim CHs is just an episodic condition.
http://headaches.about.com/library/forms/f-emerg-doc-ch.htm
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Becca
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Re: hello from Becca
« Reply #3 on: Feb 20th, 2002, 7:52am » |
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Thank you! This form looks like just what we need.
for a bit of our history:
My hubby, Bill K, is one of those who has not taken (nor been offered prescriptions for) many medications for his CH. He's been episodic for greater than 20 years. We were trying to recall the beginning of this nightmare illness, and the nearest we can figure, it started back in the early 70's, shortly after we got married -  - I'm hoping that's a coincidence.......
Anyway, about the only thing he's ever used was a beta blocker, for a short time due to the fact that it didn't work well and had undesireable side effects for him. ( & me  ) He has also used darvocet, and lots of caffeine, for some relief during his cycles.
A few months ago we aquired a machine to concentrate oxygen from room air, which has helped some with aura type pains, but he has not had a full blown attack since he got the machine, so don't know yet if it can be of any use as an abortive. We thought it might help since Bill also has sleep apnea and uses a CPAP to sleep. He had a remission of CH episodes for a period of about three years after beginning the CPAP therapy for sleep apnea, but had a very bad episode about a year ago, and now seems to be on the cusp of another. (We're getting nervous!)
Bill has on occasion, been able to abort an attack by doing some very energetic exercise at the very beginning of the episode, but that dosen't help, I think, with the usual scenario - which is the slammer that gets him while he's sound asleep.
Like everyone here, we are grateful for this community of folks who know and understand about CH, and all the information you have to share, and willingness to help. Thanks.
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Ted
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Re: hello from Becca
« Reply #4 on: Feb 20th, 2002, 8:56am » |
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If the concentrator doesn't work on full-blown attacks you might want to consider getting the regular cylinders. Concentrators haven't helped many people from what I've read (and experienced) plus there's the chance he'll get an attack and there will be a black out. Then the concentrator won't work.
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Becca
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Re: hello from Becca
« Reply #5 on: Feb 20th, 2002, 10:26am » |
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Bummer - thought this expensive little machine might do the trick. Will have to try once again to get Bill's doctor to prescribe the oxygen tank for home use.
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Karla
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Re: hello from Becca
« Reply #6 on: Feb 20th, 2002, 5:49pm » |
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My neurologist writes a little letter with a date and official letterhead on it. It states that I suffer from frequent migraines and cluster headaches and that I occassionally need a narcotic injection to abort the headache. Signed DR. X
This has gotten me just what I needed and avoided allergy treatments, and a bunch of other weird ideas and solutions to possible headache problems. This way they say "what works"? I say what works. The dr. orders the shot and I am in and out in an hour max. NICE. Any dr. who doesn't follow I would file a complaint with the medical director and in the meantime ask to see a different dr because I know it is hospital policy for him to follow my drs note.
Good luck!! Talk to your hospital/dr. Know your options.
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Karla
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Becca
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Re: hello from Becca
« Reply #7 on: Feb 24th, 2002, 9:36pm » |
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Aah ha! - Yours was the original reference I saw to the treatment plan form. Thanks for your reply, and also thanks to Ted for the form he sent along (link for it).
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