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Cluster Headache Help and Support >> Cluster Headache Specific >> They're back, so I'm back ughhh
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Message started by potlimit on Jan 26th, 2011 at 12:20pm

Title: They're back, so I'm back ughhh
Post by potlimit on Jan 26th, 2011 at 12:20pm
Hey everyone,

Yesterday got what I would call a kip-7 out of the blue.  Haven't had a cluster in about a year, and I've always (for the last 17 years) gotten shadows for about a week before getting hit. Not this time.  Came on at noon and I went straight to the GP (he's the only one I can actually tell what scripts to write).  Took me two hours to see him then another hour at Walgreens arguing with my insurance for 6 Relpax and some Topo.  Doc gave me a shot of Toradol (snooze, makes him happy though) but since I don't get a lot of Relpax I don't waste them (and I know they only have about a 10% success rate if I take them an hour in).  So the thing lasted for NINE HOURS... argghhhh.  Not nine hours of lying down, nine hours of waiting for the doc, arguing with Aetna and throwing up while waiting to get some Pho on the way home.  All done with vent, good-to-be-back-but-not-so-much-really lol.

Thanks for listening,
Mase

PS.  If anyone in Vegas has an O2 reg I can buy that'd be great... over the course of the year mine broke somehow :(

Title: Re: They're back, so I'm back ughhh
Post by Guiseppi on Jan 26th, 2011 at 5:57pm
Glad you have the 02, any chance you can drive your reg past a medical gas house and have em take a look? They've patched mine up a couple times while I waited, cracked hoses, bad O-rings etc.

Joe

Title: Re: They're back, so I'm back ughhh
Post by Samiam on Jan 27th, 2011 at 2:00pm
Well when your in cycle (and even out of cycle) this is home.  It's the best place to be ton's of support.  I don't know what I would do without this place.  Even those that think they understand and try really hard to don't have a clue.

I bought a regulator off amazon and had it within a couple of days.  It turned out that my Insurance would pay for my tanks but the place was giving me a hard time about E tanks.  It took me a couple of days but I got them.  if not I was prepared to buy them.  I already had a place lined up that would fill them for me.

Thank God my GP (which is fairly new to me) jumped in and I had all that I needed within a day of two.

Blessings,
Sami

Title: Re: They're back, so I'm back ughhh
Post by Skyhawk5 on Jan 27th, 2011 at 10:30pm
Did your GP give you a Rx for O2 ? If so you should be able to get another regulator from your O2 supplier. In case you haven't seen it, the O2 info tab from this site has some much updated info. Pls see the link below.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Used with at least minimum proper setup and with techniques that have been shown to increase the effectiveness of O2, high flow is the way to go. 15lpm is a minimum setup.

We're planning on visiting Vegas for our 25 anniversary, in May this year, got married @ The Chapel of the Bells, on the strip.

Good Luck,  Don

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