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LazyGrind

First time posting

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Hi All,

I've been dealing with chronic clusters for over a decade now. unfortunately I just ended my longest remission ever..almost a full year. Before that it was about a month lol. I thought i was cured. I believe oxygen knocked me out of my cycle. I've tried indo, verapamil and some others. Now that they are back I'm looking into getting my tank back even with how expensive it is. I've also looked into Emagilty injections?? I've read good things but I'm still unsure. I also wanted to throw out there what my go to solution is without meds. Passing stool. Thats right.. If i catch it early enough and chug a bunch of water and poop it usually goes away. Worth a tshot if you are looking for something to try.

thanks, Devon 

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There are some threads here about Emgality.  Put it in the search bar (top right of the page) and you'll see them.  Emgality is only expected to work for people with episodic CH, not chronic, but from your description, you might not meet the specific definition of chronic.

It's not likely that O2 ended your cycle.  Doesn't really do that (but since CH is pretty different for everyone, I wouldn't state that as a certainty).  

Check out the D3 regimen; it has helped hundreds: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 

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I know that O2 is just supposed to help while you're having the headache. Whats weird CHfather, Is that I had tried everything else and the longest i had gone in 10 years with out one was one month. I only had the tank for about 2 weeks and had only used it 10 times before they stopped. I kept it for 6 months thinking there was no way, But they never came back. I'm trying a sample of Emagilty  tonight, Hopefully I can actually get 8 hours of sleep. Also, I will check out that anti inflammatory regimen!

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@Brain on fire

I had cluster headaches for the past 10 years with a month being the longest I had gone without one(before oxygen). Since using oxygen (only 10 times) in early 2018,  I almost went a full year without one.

But they're back...

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LazyG', I have a (pinned) post over in the ClusterBuster Files section about "non-busting" topics related to CH.  I'd suggest you look at that for a sense of the landscape.  Denny's post in that same section (also pinned) will lead you to info about busting.

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Update,

Amovig is whack. Constipation and lack of appetite is awful. Especially when pooping relieves my pain. I reached out to a friend who's dad is a Doc. Luckily He let borrow an O2 tank and is ordering one for me to buy from him. O2 is a life saver right now. I'll let you know if it breaks my cycle since I thought it did last time.

 

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