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trytosurvive

Dr. Todd Rozen

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Hello all, Unfortunately my CH has returned since being Ch free since the TN convention. Another kick in the pants my main guy, Dr.Todd Rozen has moved to Florida and is no longer in PA. He will be difficult to replace as a doctor that understands the issue if not impossible. Still have my O2 tank until I figure out my next move. Well wishes to all, TTS

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Hi TTS!

 

Always keep that O2 around. Sorry Dr. Rosen moved. He is a great dr from what I have read.

 

So sorry that you are back in cycle after such a lovely remission. Let us know if we can help.

 

Merry Christmas or Happy Holidays if you prefer!

 

spiny

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He did suggest Clomid but I was leery of the side effects. He prescribed Soduim Oxybate, it stopped my CH in about 2 weeks and I went from severe chronic to no CH at all for the last 1 1/2 yrs or so. Nice thing is I didn't have to take it for very long. I haven't taken any meds for at least a year or better. I posted more info on this in share your busting stories awhile back.

 

Thanks Spiny, never was one for political correctness so that's fine, Happy New Year to all,,

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There are small studies of sodium oxybate for CH.  As I understand it, it works by affecting sleep patterns (it's described in one place as being like "sedative hypnotics with significant central nervous system depressant action").  https://www.ncbi.nlm.nih.gov/pubmed/21613599  I see that a clinical trial was supposed to take place in 2015, but doesn't seem to have gone forward.  I don't see much about it since 2011.  You could google "sodium oxybate" "cluster headache".  There are some old threads about it at this board (put "sodium oxybate" (in quotes) into the search bar at the top of the page).  I'd imagine you're likely to find more about it by searching at clusterheadaches.com. 

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Hi all, warnings this is also known as Zyrem. To get Rx your MD is required to participate in a program, you are required to participate in a program, this medication is only available through the Central Pharmacy. It has some nasty side effects. It is primarily used to treat narcolepsy, a sleep disorder.

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It is GHB aka the date rape drug...  my dr mentioned it as an option at my apt yesterday. Not really an option for me.  

Edited by Freud

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