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Another supporter looking for help (Read 1907 times)
lws_supporter
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Albuquerque, NM
Gender: female
Another supporter looking for help
Mar 6th, 2011 at 4:19pm
 
Hello, Just went thru the worst night yet in this cycle, so glad I found this site. There's a lot to take in & I've been trying to absorb as much as I can. Hubby has been an episodic CH sufferer for ~ 35 years. Last bout of them was about 5-6 years ago. Poor guy had sinus infection, then bronchitis...as soon as the bronchitis started clearing up, the "Beast" came calling Angry I don't think he's ever received the right diagnosis or treatment for them, appt with neurologist is set for 4/7 - I've already called and begged them to see him sooner. Been to ER 2x and Urgent Care once in the last 2 1/2 weeks, they've given him Toradal (sp?) and Ketorolac, plus benadryl & compazine on one visit, raglin (not sure about that one) on another. It has dulled the pain some, but doesn't last. Wondering if anyone has recommendations until we can try to get o2 and/or proper RX? Went out and got a Red Bull & melatonin to see if that will help tonight. Is that the right combination? Thought I read it on the boards, but tried to find it again & couldn't (sorry, I'm a bit sleep deprived myself Smiley Thx in advance!
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Guiseppi
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San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
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Re: Another supporter looking for help
Reply #1 - Mar 6th, 2011 at 5:51pm
 
The melatonin is to help avoid the night time attacks. Start with about 10 mg., 30 minutes before bedtime. May have to adjust the dosing, give it a few nights to see if it helps.

The energy drinks are an abortive, chug it down as fast as he can at the first sign of an attack. Many can abort or at least reduce the intensity of an attack with that.

Keep calling the neuros office every morning asking for cancellations, a month is way too long to wait for an appointment. Is the neuro a headache specialist neuro? Most garden variety neuros know about as much about CH as a general practitioner. We've seen the fastest results going to a headache specialist neurologist.

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Take a look at this website Bob just posted. You have to sign up to view it, but it's free, only took me a minute to sign up. It's  a listing of the major accepted treatments for CH, in language doctors understand, and with supporting data to justify its prescribing.

Thanks for being a supporter, you are our lifelines! Smiley

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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lws_supporter
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Albuquerque, NM
Gender: female
Re: Another supporter looking for help
Reply #2 - Mar 6th, 2011 at 8:40pm
 
Thanks for the additional info, I saw a post about using a combination of time-release and regular melatonin, we're trying that. Also saw the post from Bob, but didn't register to get the article - I will now tho! Not sure if the neuro is a headache specialist, turns out hubby saw him 5 or 6 years ago - partly because he was having an episode then, but mostly because (ironically &/or coincidentally) his brother died of a brain aneurysm at that time - so hubby got a scan to check for the possibility of the same thing going on with him. The scan was okay (no indications of aneurysm) accourding to the neuro. Also, had an MRI as part of one of the recent ER visits and they said there were no tumor indications or anything else. Will check out the other article now and try to find out about the neuro or another doctor that is a headache specialist. Thanks again!
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Guiseppi
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San Diego to Florida 05-16-2011


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SAN DIEGO, CALIFORNIA USA
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Re: Another supporter looking for help
Reply #3 - Mar 6th, 2011 at 10:47pm
 
Thomas combines the slow release with the standard release melatonin, I don't know the exact ratio he uses but I'd start with 50/50.....5 mg standard and 5 mg slow. He says it gets him through the whole night.

Nice he's already had the scans to rule out the "scary" stuff. Now we just need to get him to a doc who'll give him access to the meds that'll give him his life back. We'll help you any way we can.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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