Hello

[CH-ris]

Hi my name is Chris and was recently diagnosed with cluster headaches.  

Before NY doctors appointment I was convinced I had an aneurysm or tumor.  

So thank God it turned out to be CH, never thought I'd say that, and am trying to figure out my path. 

My GP said h3 thought it was CH but referred me to a neurologist.  Neurologist asked a bunch of questions and agreed it was CH.

I've tried D3, loratidine, caffeine, praying, and sumatriptan.   I still take D3, loratidine, have an emergency caffeine drink of 200mg in my room at all times, and sumatriptan.   The sumatriptan seems to be the one that works.  It takes me frim a 10 to 0 in about 5 to 10 minutes. 

I plan on asking for high flow oxygen at my next appt in a couple weeks.  The N also gave me Depakote but I feel weird about that.  Mushrooms aren't for me because I'm a federal employee and work for DoD.  

Do have federal BCBS though.  Anyway that's my story so far thanks for listening.  Good luck to you all.   

[CHfather]

If it's the sumatriptan injector (Imitrex) that you have, you can split your injections to use less and still get the same results. https://clusterbusters.org/forums/topic/2446-extending-imitrex/

YES, get that oxygen.  Changes everything.  See the overview file linked to in the last sentence below for more info about getting and using O2.

Are you doing the whole D3 regimen?  https://clusterbusters.org/forums/topic/1308-d3-regimen/

 

Was the loratadine (Claritin) prescribed, or did you decide to take it?  (It's a good idea; I'm just wondering.)

If you're not taking the full D3 regimen, you don't have a real preventive medication. That's what the Depakote would be for.  I don't think Depakote is prescribed much anymore (side effects, I would guess), but it was fairly effective in small clinical trials.  If you do the full D3 regimen, you'll get the prevention without the side effects.  I take it you haven't tried Emgality or one of the newish CGRP medications?

Since you're new to this thing, you might get some thoughts from this overview: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

[jon019]

...OXYGEN, OXYGEN, OXYGEN................................

[Bejeeber]

23 hours ago, CH-ris said:

Mushrooms aren't for me because I'm a federal employee and work for DoD.

Understood. Something I'm interested in, and you might find interesting too, is ketamine infusions, which we don't currently have a lot of collective experience with like we do with busting, but some very early prelim reports about it appear encouraging.

In a case like yours I would hope it wouldn't conflict with employment restrictions.

 

[CH-ris]

Thank you @Bejeeber for that information.   Im going to look that up and see if it is an option.  

Really sounds like Laurie got a miracle and hope she's still free today.  I haven't heard of this until just now so I'm going to see what I can find.  

My Dr appt is coming up and I will be asking him as well.

 

[devonrex]

The sadly ironic thing, at this point I wish it were something like a tumor, then it could maybe have been removed by now and not still have these. Welcome to the worst family to be in, sorry you are here, but there is a ton of info and help collected here. Talk to your neuro, there are a few things that may work, ketamine as mentioned, dhe infusions, prednisone taper to verapamil, rc seeds (their legality seems all over the place)