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no-one
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Hi,
I would like to start off by thanking you all for being here, I have learned a lot from this site.
Now the boring stuff, I have suffered from migraines my whole life. Things got worse about 6 1/2 years ago ( no nothing happened that we can remember). I've gone through 2 dr.s and I am working on my 3rd, this one is at a headache clinic. My offical dx. is cdh, clusters and migraines. We have gone through all the differant meds and are now going backwards trying to find something that will work. From reading here I see that verapamil and imitrex is working for most of you, but my bp is low and that made it even lower and I kept passig out. Imitrex stat I had a reaction to I will never take that again. So right now I am on:
900mg x3 of neurontin
75 mg x 2 of effexor
9 mg of melatonin pm
I use DHE and I just got my O2 tank yesterday (thanks to reading here about it).
I still have a base line pain at 6 everyday, and I am up atleast 2 x a night, and am being hit aleast 3-4 x a day for the last 3 months.
If anyone has any ideas, I will gladly take them.
Sorry this is so long ,
Becky
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aprilbee
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Re: Hi
« Reply #1 on: Feb 17th, 2004, 10:09am » |
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Welcome Becky! I have CH and Migraines also, sounds like reasearch is helping you out, I just want to welcome you to our/your home! Great family here! Hope the new meds will help you! 
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Giovanni
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Re: Hi
« Reply #2 on: Feb 17th, 2004, 12:29pm » |
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Welcome Becky,
You're going thru a rough time now...I hope it ends sooner than later. Are you taking B-Complex 50 vitamins with the melatonin? I believe that this would make the melatonin work better. The O2 should help a lot, but make sure it is in the configuration to your left with a non-rebreather mask set at a high flow rate.
Keep us posted on your progress.
Best Wishes,
John
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Woobie
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Re: Hi
« Reply #3 on: Feb 17th, 2004, 12:34pm » |
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Hi Becky
Welcome !!! Sounds like you're doing everything you can right now. Hope O2 works for you - it's a Godsend around here!!!
Stick around - you'll like it here...
tina
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| « Last Edit: Feb 17th, 2004, 12:34pm by Woobie » |
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stevegeebe
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Re: Hi
« Reply #4 on: Feb 17th, 2004, 6:51pm » |
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Hey Becky.
Man, I thought I was on high doses of Neorontin at 1800 mg per day.
I was working a six month gig and getting nowhere on Trex, Depakote, Frove and Verap.
It wasn't until I got off of that cocktail and started Neurontin, Cafergot, Bellaspas (at night), and increased the Verap, that the thing finally went away.
I'm not sure if it was all that or if it had just had enough of me. But I expect its return soon and this is what I will be starting off with this time and see what happens.
O2 will help.
Good luck to you and welcome home.
Steve G
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Charlie
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Re: Hi
« Reply #5 on: Feb 17th, 2004, 8:32pm » |
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Welcome Becky. The more you read, the more likely you are to stumble over something here that may help.
Here is the link to a circulatory technique that costs nothing, is non-invasive, and worked for me:
http://www.ouch-uk.org/ch/note_colleagues.cfm
Let us know how you're getting along.
Charlie
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justasound
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Re: Hi
« Reply #6 on: Feb 17th, 2004, 8:52pm » |
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I'm glad you got the O2, i hear great things about it in here, let us know how it works out for you.
PF wishes, Lee
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TxBasslady
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Re: Hi
« Reply #7 on: Feb 18th, 2004, 12:12am » |
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Hi Becky,
Welcome to the board.
Sounds like you are in a real rut with the beast.
John mentioned the flow rate on your 02.....you didn't say what rate you are on . For most here...it is around 15 or so. For some here, the low rates just don't seem to work.
Hope you get some relief and rest real soon.
PF vibes,
Jean
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katlee
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Re: Hi
« Reply #8 on: Feb 18th, 2004, 1:04am » |
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Hi Becky, sounds like your going thru alot and I too hope it ends very soon (like right now!). kat
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no-one
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Re: Hi
« Reply #9 on: Feb 18th, 2004, 8:23am » |
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Thank you all for the nice welcome. I am not sure how to answer everyone back one at a time.
John, I will go to the store and get some B-complex 50 today.
Charlie, thanks for the info of that technique, it sounds good. I will try it and let you know.
Jean, I only have mine O2 set at 8, I'll have to try setting it higher.
Now I have question about the O2. I do use a non-breather mask, but how tight is it to fit to your face?
I seem to have some room under my chin.
Thanks again, Wishing everyone a pain free day
Becky
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"Be who you are and say what you feel...Because those that matter....don't mind....And those that mind....don't matter."
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Mr. Happy
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Re: Hi
« Reply #10 on: Feb 18th, 2004, 8:37am » |
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on Feb 18th, 2004, 8:23am, no-one wrote:
Now I have question about the O2. I do use a non-breather mask, but how tight is it to fit to your face?
I seem to have some room under my chin. |
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Becky.........I can get by with 8 lpm. I've seen others go thru 15 lpm and it still ain't enough.
As for the mask......it's GOT to fit tight. If need be, hold the bugger smack tight against your face, no leaking allowed. If the fit is THAT poor, talk to the O2 supplier about a smaller mask. They probably won't have one, but it never hurts to ask!
Keep on huffing,
RJ
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ClusterChuck
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Re: Hi
« Reply #11 on: Feb 19th, 2004, 1:37am » |
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on Feb 18th, 2004, 8:23am, no-one wrote:Now I have question about the O2. I do use a non-breather mask, but how tight is it to fit to your face?
I seem to have some room under my chin.
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Welcome Aboard!
First of all, from the way you describe it, you are using the strap to hold the mask to your face. DON'T! Many of us remove the strap. You don't want to fall asleep with the mask on, and then run out of O2!
I hold the mask to my face with my right hand. Move it around until it is secure and airtight. The reason that I use my right hand, is that when I inhale, I place my thumb over the holes in the right side, and my forefinger over the holes/valve on the left side. I them remove them when I exhale. That way I make sure I am getting pure O2.
Continue asking questions. We want to help.
Chuck
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rumplestiltskin
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Oh man...you sound like my wife. A whole mess of different kinda headaches. She's got the Clusters under control thanks to this website butt the other sum bitchs are kickin her rear. She's got one now that's been pretty much 24/7 for 7 days now. She has pretty much lived with constant....and I do mean all day all night headaches of one sort or the other for many years.
my heart goes out to you.
I'm a simple episodic Clusterhead. O2 at 8 lpm does the trick. I usually have a beard so the mask never fits tight...it still works. I use the strap cause I need my hands free to do jumpin jacks, give god the finger, and hit walls till the O2 kicks in. I used to get all concerned about how the valves were workin and tightness and blah blah....what that all boiled down to was just impatience due to the severity of a Cluster and wantin it to stop instantly. I just gotta keep remindin myself to breath deep, be patient and overcome the urge to tear the mask off cause it just iritates the shit outta me. O2 does not work for my wife....so it goes.
my heart goes out to you.
good grief
den
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Cerberus
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Re: Hi
« Reply #13 on: Feb 19th, 2004, 9:08pm » |
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If the 8lpm ain't gettin it after that jack it up to 10 if that ain't gettin it, up to 12 and so on and so on.
Gettin a mask to "fit" is not an exact science I'm constantly twisting mine up to get it to fit....lol but..
Quote:when I inhale, I place my thumb over the holes in the right side, and my forefinger over the holes/valve on the left side. I them remove them when I exhale. That way I make sure I am getting pure O2.
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I do that too, seems to work.....ifn ya got more than one mask you can save yerself the effort of all that biz by using the rubber stoppers from one to plug up the holes.....best part is they are flexible enough to release when you exhale as well. leaving both hands free to do whatever ya gotta do. But ......I don't use the strap most of the time so one hand is always required. Does a better job holding the mask to my rig (when not in use) than it does to hold it to my face.
Keep experimenting in conjunction with the Doc to find what meds work for you, it can be a real crap shoot sometimes, but, well worth it when ya find the right combination.
Ramon
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Prense
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Re: Hi
« Reply #14 on: Feb 19th, 2004, 10:25pm » |
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on Feb 19th, 2004, 9:08pm, Cerberus wrote:| I do that too, seems to work.....ifn ya got more than one mask you can save yerself the effort of all that biz by using the rubber stoppers from one to plug up the holes.....best part is they are flexible enough to release when you exhale as well. leaving both hands free to do whatever ya gotta do |
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The rubber discs are a bit flimsy and do not seal up very well (even when new). The discs from a chemical protection mask fit perfectly and seal completely. You can get them for a dollar or so from many military surplus stores. The name for the disc is outlet valve disc or something like that. Looks the same as the one on the O2 masks except it is heavier and gray or black in color. Of course, they also release just fine when exhaling.
Probably makes little difference in the amount of O2 you actually get, but I got tired of forcing the discs to seal (with my hand) when I inhaled.
Chris
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