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Cluster Headache Help and Support >> Cluster Headache Specific >> The beast is back
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Message started by Jason on Mar 6th, 2010 at 1:14pm

Title: The beast is back
Post by Jason on Mar 6th, 2010 at 1:14pm
After a year and a two months of being pain free the beast is back with a vengeance. It started in late January with shadows; I immediately went to the doc and got on verapamil and prednisone which laid the beast low for three weeks with only a couple of exceptions. But the meds seem to have pissed the beast off as the last six nights have all featured LONG K 8-10's followed by long shadows that no abort seems to fully touch. I gave up on any meds last night and fought it with straight 02. I knocked one down; suffered through an hour of hell from the next one and finally knocked the third one out before finally getting to bed at 5:30 am for a few hours shut eye.

Here's hoping I'm reaching the peak !


Title: Re: The beast is back
Post by bejeeber on Mar 6th, 2010 at 6:16pm
Yeah that night time onslaught you're experiencing at peak cycle sounds real familiar.

I found that even Hi Flow O2 with non rebreather wasn't able to dispatch all of the night hits, or if it did, the attack would return in just one hour, making sleeping a bit of a joke.

So I resorted to using 1/2 dose imitrex injections at those times and found myself getting a luxurious 3 hours of sleep in a row before the next hit!

Batch reminded me that PH can have something to do with how well O2 will work for you,, so I'll be working on that next time too. The PH issue might be worth looking into for you too (?).

Hang in there man, hopefully this peak will be past soon enough.

Title: Re: The beast is back
Post by Jason on Mar 6th, 2010 at 6:59pm
Would that you DIDN'T understand my symptoms, and I think you'd agree with that !! :)

Peak cycle sucks, even on meds and O2.

Given the miracles that everyone seems to ascribe to O2 around here I have wondered whether or not I may be using it incorrectly. It seems to knock the first headache out well enough, but the next one comes about an hour later and it's usually a doozie.

I'd also be really curious to hear whether melatonin, magnesium, or any other OTC has been successful at peak cycle.

Title: Re: The beast is back
Post by bejeeber on Mar 6th, 2010 at 8:27pm
Neither Melatonin nor magnesium have worked for me. But you know how that goes, one size doesn't fit all with this stoopid beast.

So are you doing the hyperventilating thing with at least 25 LPM O2 using a non rebreather mask (with reservoir bag)? That's my attempt at summarizing the "correct" way for using it when the beast is coming on strong.


Title: Re: The beast is back
Post by Jason on Mar 6th, 2010 at 8:41pm
Yes to the O2 strategy, but using 15 L/min O2 because that's as high as I can turn my regulator up !


Title: Re: The beast is back
Post by DennisM1045 on Mar 6th, 2010 at 9:02pm
Hi Jason,

I hate that he didn't lose your address.

Go onto Ebay and find yourself a 25lpm regulator.  The added flow rate can really improve things.  I can't knock down a high kip attack with 15lpm.  Some lucky folks can but not me.  The only think I can shoot with 15lpm is shadows.  Anything above a kip 3 and I'm breaking out the high flow regulator.

That 2nd attack might be falling into the category of a re-attack.  They can be stubborn.  If the beast is coming right back like that I usually add some caffiene in the form of a strong cup of coffee or an Energy drink.  That, combined with the O2 can be enough to keep him at bay.

I hope things calm down for you soon.

-Dennis-

Title: Re: The beast is back
Post by neuropath on Mar 7th, 2010 at 1:07am
Dear Jason,

Not great when you are trying to sleep afterwards but maybe an energy drink (caffeine plus taurine) right at the onset plus O2 can tip the scale in your favour...at least by a notch or two.

I have also had some reasonably good results with a 5-6% nasal solution of Lidocaine. This must be mixed by your pharmacy.

Hope you are over the peak soon....

Title: Re: The beast is back
Post by NancyB on Mar 7th, 2010 at 9:52am
The other thing that I can add is to make sure that the hit is really gone too, before you take the mask off. Wait at least 5 extra minutes (or more ) to make sure you've really aborted it. I know I'm done when the sore spot over my right eye is no longer painful when I touch it.

Title: Re: The beast is back
Post by Guiseppi on Mar 7th, 2010 at 10:41am
AS far as the come backer Jason....
I used to gte a return within 15 minutes of aborting an attack. So for many years I would pop an oral cafergot when I started the 02. 02 beat it down, cafergot would buy me up to 12 hours pain free time.

At the suggestion of several on this site, this cycle I've been doing the same thing with energy drinks. I chug one down as I start the 02. Cycle is winding down after about 3 months and so far the energy drinks have worked as well as the cafergot at stopping the "come backers." Might be worth a shot.

As to magnesium, I've been taking a daily magnesium supplement in and out of cycle and am convinced it's helped lessen the intensity of my cycles.

Joe

Title: Re: The beast is back
Post by Jason on Mar 7th, 2010 at 5:07pm
Thanks to all for your responses ! I had a good night last night (for whatever reason) with a solid sleep and it sure makes the world seem brighter the next day ! If I remember nothing else, thanks to these cluster cycles I am thankful for EVERY good night's sleep I get.

May try the caffiene/energy drink deal with the oxygen and may also get a higher flow regulator !

Thanks again to all for their support in responding to this message.

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