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midwestbeth

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Re: Introduction
Reply #25 - Mar 18^th, 2009 at 9:32am

Rod,

I'm so happy to hear you encountered an ER Dr who was knowledgable on clusterheadaches. As Chuck said, that is rare. I'm even happier to hear you have a Rx for 02!

Using 02 at a high flow rate has helped me tremendously. I no longer live in fear of the next "attack" and can now go about my life like an (almost) normal person.

Let us know how your night went. PF wishes to you.

Beth

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Jeannie

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Re: Introduction
Reply #26 - Mar 18^th, 2009 at 10:29am

Hi Rod,

I'm sorry I'm late in reading this. Sorry for your pain but really glad you found us! And I am so happy that you found a doc willing to listen and help you.

I have had CH for 28 years.... since I was ten. They were very random as a child. They became more predictable in my teens and now occur mostly in the Spring. I have an occasional Fall cycle when I'm REALLY lucky.

I just wanted to stop by, introduce myself and welcome you! You're not alone any more!

PF wishes!

Jeannie

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"It's all a grand illusion when you think you're in control." ~ Kenny Chesney

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Kimmie CH.com Veteran Offline OW!! Posts: 187 US Gender:	Re: Introduction Reply #27 - Mar 18^th, 2009 at 4:01pm I'm with Chuck on this one!....WOW!!! You really did luck out with finding a doc like that!! That's a BIG rarety. I'd write more but my son just ran to me with the onset of his CH. mst go Talk Later
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Rod

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Re: Introduction
Reply #28 - Mar 18^th, 2009 at 5:14pm

George, I'm so very sorry to hear you've had these things for that long. I'm sure you read about them being for younger people but you started real young. They are a bitch!!!

Chuck, as I've said I live in a small town and they don't have regulators that go up that high. I remember the woman that I talked to said the regulators she has go up to 8, she had migraines for a long time and understood what I was taking about, so I said I'll look around, check with my web site, and get another regilator. I read on here that everyone has said to make sure the regulator goes un to at least 15 and that's why I didn't get it.
The Imitrex worked for me yesterday and it was a blessing. So now I have 2 injections and 6 refills for backup ready for when and if I need them. I sure hope I can get a mask soon. Even the gal at the O2 place said that Oxygen has changed over the past few years. Thanks for the response and I'll be letting you know how it works.
Rod

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Marc Ex Member Gender:	Re: Introduction Reply #29 - Mar 18^th, 2009 at 5:30pm Rod, Take a look at this: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or and this: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Rod

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Re: Introduction
Reply #30 - Mar 18^th, 2009 at 9:47pm

Marc, yes I read both of those posts. I just finished ordering an O2ptimask. Now all I need to do is find a regulator for the O2 tank. The O2 business said I could connect 2 bottles with 2 8liter regulators on them and it would give me the 15 I need. Sounds kind of funny. Any input on that kind of setup?
I'm going to ebay right now to look for a 15 regulator. I didn't take anything from the O2 place since I want to save the prescription untill I have the right parts all together. BTW, the links are Very good reading.
Rod

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Guiseppi

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Re: Introduction
Reply #31 - Mar 18^th, 2009 at 11:46pm

Well if you ran the 2 regulators at the same time, into the same bag, your flow rate would be 16 LPM. Don't see why it wouldn't work until you get the high flow regulator!

I've seem some incredibly creative contraptions on this site when people get desperate trying to build temporary masks! I'm forever amazed at peoples creativity! Wink

Joe

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ClusterChuck CH.com Alumnus Offline The BEAST rises again, and again, and again, and . Posts: 5394 Greenville, North Carolina Gender:	Re: Introduction Reply #32 - Mar 19^th, 2009 at 12:26am Rod, check your PM ... I found a regulator for you to buy. Chuck
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Rod CH.com Newbie Offline I Love CH.com! Posts: 20 Ely, Nevada Gender:	Re: Introduction Reply #33 - Mar 19^th, 2009 at 4:39pm Guiseppi, Creativity is a good word. Desperation fits also. LOL
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Introduction Reply #34 - Mar 20^th, 2009 at 11:19am Guiseppi, Creativity is a good word. Desperation fits also. LOL Yeah...thin line between the two huh? Joe
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Rod

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Re: Introduction
Reply #35 - Mar 20^th, 2009 at 3:22pm

Has anyone done any experimenting with cutting the Imitrex injection from 6mg down to 3mg? The imitrex tip (at the left) sounds like one could get more injections out of a prescription. My prescription only allows refills every three days which means one day is going to have to be taken care of with O2 or something else. I bought a new coffee maker but that really doesn't help. Grin

I haven't gotten my regulator yet either be hopefully it will get here next week, the same for the mask.

I had no Imitrex, no O2, no nothing the past day and was solely at the mercy of the beast which hit me 4 times yesterday and 5 times last night. There is no way to have a life with these things active.
My wife's birthday is coming up so I'll try and save at least one injection of Imitrex for that day and hope it works.
GOD grant PFDAN to you all,
Rod

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67skylark

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Re: Introduction
Reply #36 - Mar 20^th, 2009 at 6:36pm

Rod,
I read that IMITREX tip here a couple of episodes ago and tried it right away. The 1/3 rd dose didnt work for me but 1/2 would deal petty good, I call myself the Q tip junkie thats what I would use as a plunger. They now have a cheaper solution its sumatriptan but made by Sandoz comes in 0.5 ml vials with 6mg of medicine. Directions say inject the whole vial for a hit but iI have been using half of it, and having reief in on average 10 min. The phamacy will also sell you lodose insulin needles to go with it. The script comes 5 vials to a box, so 10 hits. Unfortunatly my insurance co considers the box of 5 should last me 15 days. The wankers. Good luck and remeber there is an end in sight. At least I'm hoping and praying that there is. Have added all of y'all here to my prayers.
Jim

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67skylark CH.com Newbie Offline Just remember no matter where you go there you are Posts: 18 Petersburg, Va. Gender:	Re: Introduction Reply #37 - Mar 20^th, 2009 at 6:40pm Rod, Forgot, I wanted to remind you about the Red Bull energy drink. Just saw that here Last Sunday and gave it a try during my morning beast appointment. Take it at first sign so far works great. 10-20 min and not escalating to badly. Find the stuff at convieniance stores and maybe the supermarket. Jim
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Rod

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Re: Introduction
Reply #38 - Mar 20^th, 2009 at 7:24pm

Hey Jim, thanks for the info. The insurance companies don't have a clue. They're only interested in what it costs. What if you have 5 hits in one day? I sure hope the Imitrex keeps on working because I feel it will prevent a hit for at least a few hours.
You mentioned you use half dose and a q-tip, when you have the solution and needle out of it's case do you just insert the needle manually then push the solution in with the q-tip? That's the only way I can figure out how to do it.
Might have to give it a try, but going to have the other half ready in case. Wink

Rod

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67skylark

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Re: Introduction
Reply #39 - Mar 20^th, 2009 at 7:39pm

Exactly Rod. First I take the label off the bottle and mark it with a sharpie at the 1/2 line. I just kinda eye ball it. Then I used the plastic kind of Qtip with the fuz pulled off. Kinda hold the syerete s/p ? with your thumb and ring finger stab yourself then push with the index finger. I'm not sure I inject right though. I never pinch the skin and all that crap I just stab the muscle in the upper arm and squirt it in. figure the muscle has more blood vesels than fat so should be quicker acting. hell id main line it i thought i could get away with it. Grin

Jim

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ClusterChuck

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Re: Introduction
Reply #40 - Mar 20^th, 2009 at 9:11pm

Rod, I have had several heart attacks, and I am NOT suppose to take Imitrex (but I do). (BTW: This is NOT recommended for those with heart problems! Just because I do it, does not mean that YOU can get away with doing it too!)

I use the half dose when I am forced to take a shot (after the oxygen fails to get it aborted).

With my finger nail I peel a strip of the paper off, stab myself in the thigh, and then use the Q-tip to inject half of it. Then I put the syringe back into its holder, and take the little case out and spin it around so that the full syringe is on the outside. Next hit, I do the same thing.

Now I have a kit with two half loads. When I get another hit, I just use the auto injector and take it like it was fresh from the factory!

In other words, I take two shots using the Q-tip, and two using the injector.

Doing the half shots, I do not get the chest discomfort that a full shot gives me, I get more hits aborted with each pack, and I never suffer from the rebounds! Sounds like a win win situation to me!

Now, remember!!! I ONLY use the imitrex AFTER I have tried to abort, using the oxygen! Well, I take that back. I also use it when I am flying, and don't have/can't use oxygen.

Chuck

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Rod

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Re: Introduction
Reply #41 - Mar 20^th, 2009 at 11:14pm

Thanks a million Chuck. I'm still using the Imitrex since my supplies, mask and regulator, haven't arrived yet. I sure do hope O2 works for me. In any event I will keep the O2 items handy. I had a remission of 2 years this time so I never know when I'll need it again. I'll definitely let you know when I get the O2 items and if the O2 works.
Rod

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writer CH.com Junior Offline I love YaBB 1G - SP1! Posts: 64 x0\|Washington, D.C.\|USA\|\|0\|0\| Gender:	Re: Introduction Reply #42 - Mar 21^st, 2009 at 4:10pm Rod--Yep, I'm another person whose clusters started over 40 years ago. Barbara
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