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hey everyone, thanks for accepting me into this group

i have been misdiagnosed with migraines for years. The past 4 years i have been experiencing what i now know is episodic cluster headaches. it starts off with one attack a day and shortly escalates to 8+ attacks a day. I am on day 14 and going to the emergency department today to beg to see a neuro, get scans done and try the oxygen. I have had scans when i was 15 (25 now) and nothing was found. i have a referral to see a neuro but cant afford it/the wait times are too long for me. i have trialed numerous preventatives, currently trialling Indometacin. i strongly dislike imitrex, sumatriptans etc as they may stop an attack but make the next ones so much worse. my attacks start at 4am and i am falling asleep around 7pm with the help of cannabis/sleeping tablets. thankfully, unlike most of you im still getting around plenty of sleep. of course i am exhausted and completely useless in this state though.  i have some connections and may be able to get some MM (or if anyone is in sydney, australia HMU). the only now medicated relief i get is sitting in a super hot bath with a wet cold towel thats been in the fridge wrapped around my head/neck.

questions:

1. has anyone tried indometacin and found relief?

2. in regards to oxygen therapy do people here use the CPAP machines or a the emergency 100% canisters?

3. my following medications (which i basically take the max of each day) are: ibproufen, paracetmol, indometacin, panadeine forte (codeine), aspirin, b12 and magnesium vitamins. i also use oils and tiger balms. would any of these interact with MM dosing?

4.  does anyone ins SYDNEY AUSTRALIA recommend a neurologist? preferably closer to the northern beaches/cbd?

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Welcome to the community Horton.....sorry you had the need to join us though!!

As to your questions, indomethacin is used as a diagnostic drug......if it stops your pain, you get a hemicrania continua diagnosis....if the pain persists, most docs DC the indo.

O2 needs to be 100% in most cases......CPAP will not work unfortunately.

My advice would be to read up on Batch's vitamin D3 regimen and start there ( ensuring you take all the co factors as written) and if you're on Facebook, ask to join the Australia, New Zealand  Cluster Headache Support group........a good mate of mine is one of the admins......Give Dan Bailey a shout and he can get ya sorted on the O2 and other clusterhead information.  Unfortunately, I can only think of a few members from down under in the almost 10 year history of this board.....

Be well...

Dallas Denny 

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Hiya Horton....welcome....dunno if yur handle  was intentional but I can't resist: "Horton's Syndrome" is an old time name for....cluster headache! It's not amusing... but definitely a boy howdy.....

Denny did a beautiful post in the CB FILES section re O2, busting, plus...a great list of links!

https://clusterbusters.org/forums/topic/5997-under-construction-welcome-newcomers/

OXYGEN may change yur life. Short take away....ya need 100% O2 with a flow of at least 15 LPM (some go higher: 25-40), the proper mask, and the right technique (best determined through trial and effort)...ya need tanks large enough for 10-20 min usage minimum, multiple times...those emergency oxygen cannisters are a joke...

Can't answer whether any of the medications you list interfere with busting, but if you are concerned with rebound headaches...those are as bad or worse than Imi...or don't work for anything beyond a shadow (except for the  B12, Mg and tiger balm)..as an old engineer used to tell me of a useless effort..."I'd drop that like a shitty diaper"....

The D3 regimen has saved many a clusterhead too....and it's good fer ya anyway...…….

Best

Jon

 

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