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Jim L

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Erratic timing....
Jul 27^th, 2010 at 10:28am

No, I don't mean erotic! (I wish....)

Is it a good sign or a bad sign that the timing of my CH (normally, one at 2am and one at 3pm) during this cycle is changing? I had none during the day yesterday and the day before (during the day), but last night I had three (at 10:30pm (kip 6 or so), 3:00am (kip 6), and a REALLY bad one (kip 9.5) at 7:00am this morning). The night before I had two of 'em. Oxygen killed all of them (with imitrex only once per the first one each night -- for heart issues, I'm afraid to use it more than once a day)

This morning's bad one lasted almost an hour and a half, which is abnormally long.

When a cycle ends, do most of you folks find that they just stop, or does the timing/intensity start to fall apart? (I'm hoping the latter, in my current caffeing-induced agitated moment of "just a shadow" hopefulness)

I'm still on 480 mg Verapamil, but had to stop the topramax to be able to be THINK enough to funtion at work. Prednisone = bad for me.

I have an appointment with my GP this afternoon. I'd like to add another quick-acting pain-reduction abortive to the mix -- NON-narcotic (they don't work for me) -- Suggestions? Caffeine, of course. Migranal nasal makes me puke.

Carrie, you had mentioned another triptan that seemed (for you) to work all day. Frova?

Jim

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Erratic timing.... Reply #1 - Jul 27^th, 2010 at 11:13am Frova seems to have the longest half-life. Next is Amerge.
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Skyhawk5

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Re: Erratic timing....
Reply #2 - Jul 27^th, 2010 at 3:35pm

Jim, sounds like the cycle peak. This usually happens to me towards the end of the cycle. Don't let your guard down, it's a tricky beast we deal with.

Don't know if you already do this but with the O2, sit or stand straight so as not to restrict the lungs, hyperventilate the O2 as hard as you can and exhale as completely as possible.

Don

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Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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Mosaicwench CH.com Sponsor Offline www.mosaicwench.com Posts: 3507 Near Milwaukee WI, USA Gender:	Re: Erratic timing.... Reply #3 - Jul 27^th, 2010 at 4:59pm So sorry you're having a tough time. We're here for you and praying for pain free days ahead.
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JustNotRight CH.com Sponsor Offline CH version 15.0.8 member since 2005 aka GingerS224 Posts: 1300 Wilkes-Barre, Pa (USA) Gender:	Re: Erratic timing.... Reply #4 - Jul 27^th, 2010 at 5:15pm Hoping you find some relief soon Jim !
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Re: Erratic timing....
Reply #5 - Jul 27^th, 2010 at 6:24pm

Jim L wrote on Jul 27^th, 2010 at 10:28am:

and a REALLY bad one (kip 9.5) at 7:00am this morning).

This morning's bad one lasted almost an hour and a half, which is abnormally long.

I hate to see these, remember many, so just tossing in a suggestion to think about.

Try seeing if you can knock each hit down with the oxygen alone first. If it is still getting prolonged, accelerating, and not budging with oxygen, then use the Imitrex on that one.

I know it's best to use Imitrex as an abortive early, but if after using the oxygen quick and first and it's not being effective, the hit's getting worse, having the trex to fall back on for help should cut out prolonging a high Kip hit. Otherwise, the Imitrex may have been used on a hit the oxygen could have handled itself.

Oxygen will catch most, but I've had ones it can't seem to, some early mornings. They can be just TOO PERSISTENT.

As Don mentioned, could be a peaking range. You might speak to your doc about upping the verap maybe 120mg for a short while, also.

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Jim L

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Re: Erratic timing....
Reply #6 - Jul 27^th, 2010 at 6:39pm

Thanks for the tips, Don and Kevin. It is tough to not go to imitrex first. I'll try oxygen only on the ones during the day when I at least get a little warning.

Don, also I've been using the helpful tip you gave me at the confernce -- COMPLETELY exhaling as much as possible every few breaths to bring in as much "new" oxygen as possible.

I saw my regular GP today and he's willing to prescribe Namenda if I want to give it a try as a preventative.

I do hope that I'm nearing the end of the cycle and can get back to life again.

Jim

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Jim L

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Re: Erratic timing....
Reply #7 - Jul 28^th, 2010 at 4:38am

Tonight's was about an hour late. It was pretty bad when I woke up and made sure I sat upright and concentrated on getting lots of oxygen in FAST. It stopped it in about a half hour. Not too bad. No imitrex. I added melatonin back into the mix last night, to see if it might derail this cycle's train that (I feel it in my heart) is about to derail and leave me for a while. Yet, as I type this over an hour later, I'm getting a strong shadow and will go suck some more oxygen until I feel okay enough to go back to sleep. The boss isn't going to like it, but I'm probably going to be either late or out for the day after two nights of bad ones that are irregularly timed. I'm trying to avoid thinking too much about yesterday morning's doozey and hope it doesn't repeat itself.

Just to humor me (I think), My GP prescribed Namenda as a potential chemical kick in my brain's ass (the hypothalamus, of course) to push it over the edge and maybe end the cycle. Pharmacy had to order it, so I'll get it today.

(How many mixed metaphors can one guy write at 4am?)...

Jim

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Re: Erratic timing....
Reply #8 - Jul 28^th, 2010 at 6:07am

Oh Jim - sorry to hear. Sad

See if they can get you some Frova to give a trial of - perhaps your doc has samples? That is what I mentioned, and I know it doesn't work for everyone, but it's been a lifesaver for me - mainly because my lifestyle demands a "no beast at work" policy. Wink

I can't take Imitrex because I have cardiac side effects to it (primarily rapid heart rate, but I have a history of supraventricular tachycardia, so it's not a good idea), but the Frova doesn't give me any cardiac side effects. Secondary to Frova, I use Amerge - which, as was said above, is also a longer acting one, though not as long acting as Frova. Frova has a half-life of about 23 hours or something like that - for me, it'll keep the beast at bay for at least a solid 12 hours - sometimes up to 18. It works great, but I do pick and choose my days I use it on so that it doesn't stop working or cause bad effects that I'm not aware of.

PF wishes!!!! Hang in there!!!

Hugz,
Carrie

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Re: Erratic timing....
Reply #9 - Jul 28^th, 2010 at 6:38pm

Jim,

I don't remember from Atlanta what level of O2 you are using. If it is only 15 lpm you would be a candidate to up it to at least 25. I had given up on O2 for several years until Beyull talked me into trying 25. I can usually knock one out in 5-8 mins at that. I can still suck the bag flat when fighting a bad one at that rate. At 15 I wasn't getting enough air.

Jerry

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