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Supporter's Corner >> Supporter's Corner >> What now...
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Message started by Tona on Jan 21st, 2016 at 10:09pm

Title: What now...
Post by Tona on Jan 21st, 2016 at 10:09pm
Husband had two really bad ones today.  He actually had more than that but he toughed out the pain through a couple but two he waved the white flag and took the Imitrex auto injectors.  Now he has to wait 15 hours until he can have another.  So what do we do now?  Just pray through any more until 3 pm tomorrow?   

Title: Re: What now...
Post by Mark Olson on Jan 21st, 2016 at 11:19pm
I hyperventilate with O2.  If I do that just as the HA comes on, I can knock it down to about 5 minutes.

Have you looked into the O2 information on this site?  I use the O2 mask they sell here and just buy my O2 from a local medical supply co.  It's $20 for an E tank refill.  You can use welder O2 if you want even cheaper.

Title: Re: What now...
Post by Mike NZ on Jan 22nd, 2016 at 2:28am
Another vote for the oxygen option. You can use it as many times a day as you have CHs and save the injections for when out and about, away from your oxygen.

Title: Re: What now...
Post by AussieBrian on Jan 22nd, 2016 at 4:45am
Many ClusterHeads get a bit of relief by quaffing down a RedBull or Monster type of drink at the absolute first hint of a hit. Seems it's the caffeine/taurine mix that can make a difference.

Sounds awful, tastes awful, but many here say it's worth a try.


Title: Re: What now...
Post by AussieBrian on Jan 22nd, 2016 at 4:54am
And just to add, you're what's known around here as a Supporter and everyone of us thanks you for caring about one of our ClusterMates.

Welcome home.

Title: Re: What now...
Post by Tona on Jan 22nd, 2016 at 12:17pm
We have tried the red bull and for a baby cluster it works.  For Big Daddy not so much.   Doctor didn't discuss oxygen but I've done my homework now and can bring that up after we finish all the tests and he goes back to the doctor.  Thanks you guys for the info and advice

Title: Re: What now...
Post by Peter510 on Jan 22nd, 2016 at 2:19pm
Tona,

When you do get the O2 may I suggest that you purchase the mask on sale here at CH.com store on the left of this page.

They are designed specifically for CH'ers and are so much better than the standard mask.

Good luck,

Peter.

Title: Re: What now...
Post by maz on Jan 22nd, 2016 at 5:53pm
I agree with every one else who has suggested oxygen, but uyou must have a flow rate of at least 15 litres per minute and a non rebreather mask or it won't work. 

Also the injections can be split. Half the measured dose is usually enough to work so you can make 2 injections last for 4 CHs.

On the left of your screen you will find a blue tab called "imitrex tip" and a yellow tab called "oxygen info". Both have very good advice.

Title: Re: What now...
Post by Tona on Jan 24th, 2016 at 9:12am
Unfortunately they've given us the enclosed "epipen-esque" injectors that can't be broke down that way.  Something about what my insurance covers better. Ugh.  After the bad one that he couldn't take anything for and had to suffer through, he's been 24 hours headache free.   Which is both a hopeful AND a scary thing.  Last time he had a 24 hour free period he had a really BAD one that came with nausea and vomiting even with a nausea med and the injection.  Hoping it's more hopeful this time.

Title: Re: What now...
Post by maz on Jan 24th, 2016 at 9:22am
Are they by sun pharma, pen type injections. If so there is a way to break them down. It's fiddly to do but worth a try if you are really desperate. Google "cluster headache splitting injections" and theres a guy on you tube shows you what to do.

Alternatively, get some syringes with needles - the type diabetics use.  Inject from your pen into the syringe, and then you can use half at a time.

Title: Re: What now...
Post by Tona on Jan 25th, 2016 at 10:17am
So here is something odd....during the headache when he couldn't take the injection, he was lying in the bed and would close his eyes and then open them kind of wildly and then close them and repeat.  I asked him what was going on.  He told me when he closed his eyes he could see a baby and it was kicking.  The more the baby kicked the worse his head hurt.  So he made himself keep his eyes open as much as possible.  Anybody else had something like this happen?

Title: Re: What now...
Post by Mark Olson on Jan 25th, 2016 at 12:01pm
Not me...

Title: Re: What now...
Post by Tona on Jan 25th, 2016 at 12:10pm
He's scheduled for a brain MRI with and without contrast tomorrow.  Maybe that will give me some answers.  Don't know whether to hope they find something or not.  Kind of a weird situation to be in.

Title: Re: What now...
Post by Peter510 on Jan 25th, 2016 at 12:33pm

Good luck tomorrow. Hope all goes well.

Peter.

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