UMASS
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Posts posted by UMASS
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CH Father: I was blessed. The oxygen company guy knew about CH's. They gave me an M tank (& stand) with a regulator & the correct mask.My Blue Cross/Blue Shield of Mass. picked-up that tab! Showed me how to use it in detail. Here's the thing...(knock on wood) I think the tapered prednisone broke my cycle completely (I think) I'm loving it! Going back to my neurologist on 06/23 for a check-up! Life is good right now!
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Thanks for the update. At least the doctors in Mass. are all 3+ months out for an appointment. Found one local that got me in within 10 days.
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17 hours ago, spiny said:
You are now into some serious good reading sir. Glad to know it too. Ask questions if you read something that is not making sense. Some material is old too regarding how much of this and that.
I cracked up at the knucklehead statement. Long time since I heard that favorite!
Spiny: Remember I'm semi-old. "Knucklehead" is kind of an old school term. Glad I could make you chuckle! Two days no CH. Fingers crossed. 02 will be delivered on Monday.
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I'm new to these boards. I went into 13 years of remission. Then 4 weeks about they're back. The pain isn't anywhere near as bad near as in my younger years (i'm 51 now) You sound a lot like me. Started around 17-18 years old, then the worst was from my mid 20's-30's Sometimes some people "outgrow" them. I know where you're at & I feel for you. I've been reading this board since yesterday & I cannot stop. I need to be informed. Hang in there!
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The one drug (for me) that completely stopped my CH was Sansert/Deseril. I never, ever received a Cluster once I took the medicine. But it's been discontinued for years now. It was the miracle drug for me. Damn shame.
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BTW...Can anyone point me to the ClusterBuster Files? I can't seem to find it.
Quick Edit: I'm a knucklehead. I found it.
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CHfather & Spiny. Many thanks for your insight. The neurologist prescribed me O2 & a 30 day supply of prednisone. She want's to see if that helps. She mentioned that there might be a chance that the CH will withdraw again. She did bump-up my Verapamil to 960mg a day like CHFather mentioned. After I wrote this post (before seeing the doctor) I had one small CH that quickly went away. I haven't had one since (fingers crossed) She also mentioned that Sansert can be made by a compound company as a last resort.
I'm just hoping that it's a "passing" episode & I'll be free again of the madness. I'll chime back & let you know how I make out. Thanks again for your help.
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Hi All: I guess my subject line says it all. My name is Alex & I'm 51. I've been free of CH for about 13+ years. I'm was so very grateful for not having the pain anymore. Pure joy. Mine started for me when I was 17 or 18. The worse time in terms of the pain was from my mid- 20's to mid 30's, then the frequency started to taper down as the years progressed. By my late 30's they simply never came back. About 4 weeks ago...I felt the warning pain coming on (about 10-15 minutes for me), then I was back in the world of pain again.
I've been taking Verapamil (240MG twice a day) for over 25 years. It seems to help, but when the CH decides to get completely unruly, it doesn't work. I remember years ago my doctor put me on the Amazing drug called Sansert/Deseril. It was the ONLY drug to would stop a CH dead in it's tracks. Come to find out the drug has been discontinued because of the possible fibrosis issue.
I have an appointment tomorrow (Thursday 6/1) to see a neurologist. Two things I'm hoping for. A drug that out there to prevent them or (the best scenario) is the CH pack-up again & go away. As I get older my constitution isn't as strong as it was 20 years ago & it effects me even more now. Has anyone else had a serious hiatus (years) from CH & they came back?
Thanks for listening everyone!
Alex
CH Back after 13 year of being Dormant
in General Board
Posted
Spiny: Thanks my CH friend. I think I might have found the issue that "may" have triggered my CH after 13 years. I'm still a smoker (I know I need to stop) It dawned on me that I changed from Parliament Lights to Marboro "Red Label" about the time my CH started again (one week later) I decided I really need to stop outright.
I had a serious case of Bronchitis about 2-3 years ago & my doctor gave me Predisone & it worked within hours! It's done the same for me with my CH (day 5 now) I'll ask for a couple of refills when I visit my neruo. in a couple of weeks. I'm hoping that I go dormant again. From what I gather Predisone isn't the best for your body in general, hence the tapper. But...I'll take it if it get's me out of pain. Be well Spiny.