Posted by gary (18.104.22.168) on November 20, 1999 at 12:14:21:
In Reply to: Thank you for all the wonderful advice, but posted by Rick on November 20, 1999 at 03:08:43:
certainly understand what you're going through -
but it certainly isn't specific to cluster headache - but if I get going on our medical economic system in US I'll have drummer and all the other rabid right wing capitalists on my neck
I think the only answer to that is the cliche:
"when you reach the end of your rope, tie a knot in it & hang on"
WARNING EVERYBODY - somebody put a post up saying they were trying an UV light - that is NOT what they mean - a UV light is extremely dangerous;
they were talking about a full-spectrum light VERY VERY different
no matter what - any light therapy is extremely experimental - I'm NOT putting it down, I'm trying one type myself right now
there is NOT established protocol or documented consistent results, so it is NOT something for anyone with a severe problem to try, UNLESS they have backup resources & meds to cover their ass
CHEAP THERAPY THAT WORKS FOR ME SOMETIMES:
I am episodic.
I can tell when a cluster series is starting before the first painful attack.
SEVERAL times I have been able to BLOCK the attacks - not stop the cluster (a big difference)-
by going on a "benadryl maintenance diet" -
2 when getting up in the AM
1 every couple hours all day long, (2 immediately if I start getting the twitch)
3 when I go to bed
that works out to 10 - 12 every 24 hours, which is at the limit of the label specs
this cluster I have added a 3mg melatonin at bedtime
seems to help, but no promises
that's also a cheap supermarket item
then I just keep that up until I sense the cluster may have passed and start TAPERING OFF
I use the generic version of "benadryl", REAL CHEAP - less than $2 a day, from the supermarket - the name will usually be a variant of "dyphenhydramine" -25 mg capsules - read the ingredients, be sure you get the one that ONLY has diphenhydramine or diphenhydramine citrate, as active ingredient - DON'T use the combination forms - you DON'T want to be taking that much decongestant
also - i believe the kids' liquid version works faster IF you take a BIG dose, half of the 4 oz bottle is equal to 3 adult capsules - but it is 4X more expensive per dose thans the caps, AND it makes me a bit nauseous - not the med, but the nasty syrup they dissolve it in - reserve it for when I wake at night & an attack had a "headstart"
you WILL notice side effects -
probably very drowsy & spacey
maybe gain weight
try to be out in the daylight as much as possible
if you want a list of nonmedical techniques that might help with the pain & attacks, email me-
nothing secret - just too long a file for a CHMB post
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