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hey there (Read 574 times)
shamus217
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hey there
Jun 12th, 2009 at 3:55am
 
Hello to all of you. Just wanted to say that I visit this site every now and then just to remind myself that other people deal with this too. I've been getting clusters for over twenty years and have tried just about everything there is to manage them. I've come to this conclusion: You can't manage them, but you can deal with them! Every cluster is different and what works on one does not always work on the next but may work on the one after that and so on and so on....My beast seems to return in the early summer these days which really puts a damper on things. At the first sign of them iI usually go to the neurologist for three consecutive days of steroid infusions followed by a seven day prednisone step down. The pred sucks but it will break up about half of the cluster cycles and send them back into remission, to treat each attack O2 is the drug of choice i just wish the tanks wouldn't go so fast. Any triptan will knock out an attack and i don't know about most of you but i only need half a pill to do the job and as of about a month ago Imitrex went generic !!!!! Anyway as you can see by the time stamp i woke up with a nice one but O2 works best when the attack is already full blown and seems to work even better on the PM attacks. Anyway as a seasoned CH survivor i feel it is my duty to help anyone who has any questions so ask away. Just a few things everyone should know; 1. Sleep is key, if you start to notice insomnia or bad sleeping habits a cluster is almost certain to follow, 2. Get a good Neurologist, don't let them dismiss you or just throw the latest trial at you, get to know what works for you and demand that they help, if they don't get a new Doc,and 3.every CH sufferer should have a script for home O2 and the Nero should make sure your insurance knows why you need it. Good Luck to all of you this is a great site and you are not alone.
                                                            Patrick
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Guiseppi
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Re: hey there
Reply #1 - Jun 12th, 2009 at 11:40am
 
Welcome to the board, glad you stepped in! Sounds like you have a pretty good handle on your routine. Yeah, finding that educated neuro is a real challenge for many. We've lost track of the number of people treated for migrains, sinus infections, abcessed teeth!!!  Wink


(another 02 pusher... Smiley)
Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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