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Another Newbie (Read 491 times)
tundra
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Another Newbie
May 1st, 2022 at 1:42am
 
Hi everyone,

Like many of you, I've suffered from this monster for many years. I'm 35 years old, and I've been having these strange, tick-tock headaches since I was perhaps 13 years old. Short, one side of the head, and brutally painful. I didn't get diagnosed with clusters until I ended up in the ER thanks to a frightened college nurse and an overly cautious EMT who really wanted to saddle me with an expensive ambulance ride.

I'd been pain free for more than 4 years up until last week, when they decided to come on. I don't think I've ever really had a season. They just decide to show up and stick around for a month and a half of fun. Pill form of Imitrex was my only way to abort (and we all know how useful that is). Today, because of my relatively quiet location, I don't have any abortive tools. My GP won't be able to see me until June. I discovered the D3 regimen last night, and I bought all the goodies (aside from K2, which I couldn't find, but will order), and another, less mentionable preventative.

I'm trying to line up oxygen in my area. I've never had luck finding a medical supplier, or having my GP actually prescribe it. But, now I've got a doctor who I know who's happy to prescribe it if I want it--if I can find it. Otherwise, he's also a diver and a welder, so he's happy to help me go the more suspect industrial route.

As a newcomer to the forum, are there any wisdoms that you all can impart as I try to tame the beast for the next 2 months? If anything, your company and support will be helpful too.
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AussieBrian
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Cairns, Qld, Australia
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Re: Another Newbie
Reply #1 - May 1st, 2022 at 4:17am
 
G'day,  Tundra,  and welcome to the club no-one wants to join.

Looks like you've got yourself and your plan quite well organised and I'm guessing you've also looked at the button on the left side of your screen,  Oxygen Info,  which will help out no end when chatting with your friendly welder.  We like him a lot.

There's also a special mask available here at ch.com which many ClusterHeads think is pretty good.

As to taming the beast when it sneaks up just to spoil your morning,  many people are having great success chugging down a can of Red Bull at the first hint of a hit.  Tastes awful,  I know,  but there's something about the caffeine/taurine mix that seems to work wonders.

Ice cold showers work for some,  boiling hot showers work for others,  and some of us stand there switching the tap from one extreme to other.  I once managed to scald my entire scalp and didn't even realise until I woke in the morning to find all my hair on the pillow!

Was still the best night's sleep I'd had in a long time.

Please let us know how you're getting on and we'll help however we can because we care,

Brian down under.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Peter510
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Re: Another Newbie
Reply #2 - May 1st, 2022 at 5:14am
 
Tundra,

Welcome to CH.com.

Do a bit of online research into gammaCore. It will inform another conversation with your Doctor.

I have found it a useful abort, as others have, but it’s not yet widely known about in the Medical world.

Peter.
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tundra
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Re: Another Newbie
Reply #3 - May 4th, 2022 at 5:57pm
 
I was able to get industrial O2, a non-rebreather mask, but the reg I bought doesn't fit on the tank. I've gotta wait for some hardware fittings to come through before I can use it. Unfortunately, I was only able to get a smaller tank, 60 CU FT, but it's what I could get my hands on. The non-rebreather mask needs a bit of tape, but should work fine. I'm wary about the O2 from an industrial tank, but Linde doesn't put in any kind of additives or anything to the O2, so it should be safe. Still kinda nervous.

I got a nasty one this morning around 7:00 am, one of my usual times. I ended up sprinting up a hill, and that seemed to knock it down about 10 minutes earlier than normal, though the pain was intense.
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AussieBrian
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Re: Another Newbie
Reply #4 - May 5th, 2022 at 1:14am
 
The general belief around here is that industrial tanks and oxygen are every bit as good and safe as the medical stuff,  just easier to come by as you don't have to leap the hoops and hurdles of the medical  'professionals'.

It's great you can see a way forward so please keep us up to date.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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