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        Cluster Headache Help and Support >> Cluster Headache Specific >> Worst ever...
        
(Message started by: Buzz on Apr 17^th, 2008, 9:28am)

Title: Worst ever...
Post by Buzz on Apr 17^th, 2008, 9:28am

3 day, 3 nights without dropping below about Kip3. maximum 30 minutes between big kip7-9 hits. nothing is working. 5 tanks of o2 0 no relief... I'm guessing 16-20 headaches/day. exhausted, insane with pain/frustration... please send vibes...

Title: Re: Worst ever...
Post by brewcrew on Apr 17^th, 2008, 9:54am

Perhaps you should consider an in-patient IV DHE treatment. If it works for you the same way it worked for me, you'll be bored silly within 4 hours.

Keeping you in my thoughts.

Title: Re: Worst ever...
Post by Guiseppi on Apr 17^th, 2008, 9:57am

Have you tried a prednisone taper? When all else failed in the past it would buy me 10 days of pain free time. Just enough to catch your breath again. Hang in there. :-/

Guiseppi

Title: Re: Worst ever...
Post by Batch on Apr 17^th, 2008, 12:21pm

Buzz,

What flow rate are you using for your oxygen therapy? 15 liters/minute is the minimum and even that flow rate will not be effective in aborting some attacks at Kip-7 and almost none at Kip-8 without staying on it for 30 to 50 minutes.

There are several constant flow regulators capable of 25 liters/minute available over the Internet. Increasing the flow rate will improve the efficacy of oxygen therapy.

Hang in there,

V/R, Batch

Title: Re: Worst ever...
Post by seasonalboomer on Apr 17^th, 2008, 12:38pm

I can't even breath much over 15 lpm and generally, after about minute or two dial it down to 12 lpm as I'm at a rate that is even with my breathing going into the bag. 25 lpm seems like it would just blow off a lot wastefully.

Title: Re: Worst ever...
Post by KatzPurr on Apr 18^th, 2008, 1:21am

:-/ My heart goes out to you Buzz. I cannot even fathom such a severe bout as you've described. I will keep you in my thoughts and prayers and hope you can find something for relief soon. I would agree that a pred. taper is the way to go to at least get you some PF time.

Title: Re: Worst ever...
Post by superhawk2300 on Apr 18^th, 2008, 8:05am

Sending you PF vibes..............hang in there buddy

Title: Re: Worst ever...
Post by Buzz on Apr 18^th, 2008, 12:41pm

To all those with kind words and support, THANK YOU!!!

The head is still giving me a fair amount of up-hill, but its not as bad - several hours pain free last night and today only a few hits of oxygen (it ran out about an hour before the resupply arrived - who'd have thought that 5 ugly O2 cylinders could be so coveted!!!)

My cycles seem to start with a slow, sporadic build-up then a spectacular "main event" when they just attack and attack without a break for 2/3 days, then they calm down to something manageable...

In the meantime, I am enjoying all the wonderful twitches and spasms that I think are a gift from Messers Red Bull...