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miapet
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Re: looking for ideas
« Reply #25 on: Mar 12th, 2004, 12:52pm » |
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Thanks for letting me know that we aren't alone (on the o2 thing) . . .He's still getting hit every 2 hours, but the 02 is kicking them pretty quickly (thank goodness).
I'm printing a lot of treatment information, to go armed to the goofy internest . . .at least he (and his nurse) have stopped arguing with us! miapet
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Luke63
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Re: looking for ideas
« Reply #26 on: Mar 12th, 2004, 1:23pm » |
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Miapet...I read this......and I want to cry for him myself. I am starting o2 today..will let ya know if it helps. Be strong...Jim
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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miapet
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Re: looking for ideas
« Reply #27 on: Mar 12th, 2004, 3:55pm » |
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Jim . . thanks for the support . . .I'll be thinking of you. I hope the o2 works well for you . .it's been a relief for D!! *sending you lots of positive energy and light* miapet
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Connie2
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Re: looking for ideas
« Reply #28 on: Mar 13th, 2004, 7:30am » |
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I wish that I could give you advise. I'm Chronic and have spent close to 2 months in the hospital taking all of the above mentioned meds none of which stopped the cycle. I have been told that I am a very tough case though. I am not posting to be negative at all. Different things work for different folks. That is my point here. What they had tried initially was 02, prendisone, verapamile, depakote, dhe and a few other meds that i can't remember at the momemt. The will come to me. I'm taking Topomax right now. Please watch your blood pressure if you are taking verapamile. It does lower your BP to dangeriously low levels if you are low to begin with. I had a bad experience with that. I'm still in cycle. I"m getting ready try Botox. I'll try anything. Good Luck to you...
Connie
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| « Last Edit: Mar 13th, 2004, 7:34am by Connie2 » |
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miapet
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Re: looking for ideas
« Reply #29 on: Mar 13th, 2004, 10:01am » |
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Connie, I wish you the best . . .please be careful. 15 or so years ago, D tried about everything you mentioned (and more) . . .I think the only thing he hasn't tried is DHE, and of course Botox (it wasn't thought of then). Due to all the pharmacy back then, we now deal with vascular damage and high BP (although, with diet etc, we have it very manageble most of the time) . . .we aren't going for DHE or Botox . . .and hopefully no more rounds of any of the 'traditional' medication, as it is all so hard on the body. Our focus now is non-traditional-alternative-holistic . .how ever people want to describe it. Of course, we are feeling really good that the o2 is working as an abortive . . .even if we do have to use it every 2 hours. (yesterday the h/as didn't get above a 6 or 7, so this is good *s*)
I wish you the best Connie . . please be careful.
*positive energy and light*
miapet
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t_h_b
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Re: looking for ideas
« Reply #30 on: Mar 13th, 2004, 11:56am » |
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Has your husband tried melatonin?
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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miapet
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Re: looking for ideas
« Reply #31 on: Mar 13th, 2004, 12:36pm » |
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that's one thing we haven't tried. I can look when I am getting skullcap today . .
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miapet
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Re: looking for ideas
« Reply #32 on: Mar 14th, 2004, 1:02pm » |
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WOOHOO yesterday, we managed 7 hours without a full blown h/a!!!!!!!!!!!!!!! lots of anxiety and clock watching (especially the last 3 or so) . . .shadows . . .but not full-blown!!! felt like a miracle!!! anyway . . .from 5pm to midnight is the longest stretch since the pred taper . . . .I just wanted to share a piece of good news with everyone! Thanks for your continued support, encouragement, and ideas! miapet
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Luke63
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Re: looking for ideas
« Reply #33 on: Mar 15th, 2004, 9:55am » |
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Mia.....Started O2 on Friday....and Ive had 3 realatively peaceful nights.....it really caught em quick. Now ..do u have an O2 tank....or a concentrator.....because if you have a concentrator.....do what I did...just go to sleep with the cannula on..and keep it on...dont even take it off.....kept me for the most part PF for 3 nights..I really hope this works for you..I really really do......sendin Love and lots of it to the both of you...God Bless...Jim
aka(Luke)
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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miapet
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Re: looking for ideas
« Reply #34 on: Mar 15th, 2004, 12:44pm » |
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I'm so happy for you!!!! And thank you for the information on concentrator and canula!! We have both a concentrator and tanks, AND they accidently delivered canulas the first go.
I'm sure those 3 nights have been a much deserved miracle for you *hugs* Do you also have a non-rebreather mask? (the kind with a bag . . .but don't use the elastic to hold it on)
The beast hits every hour if D tries to sleep . . .Jackie suggested Dramamine . . .I need to ask her more information . . .like time, dosage, etc . . . and does it have a rebound effect? Do you do it during cycles within the cycle (since we're chronic)? Anyway . . Jackie?
Again . . I'm really happy the o2 is working for you, and that you have been getting to sleep!!! wishing you all the best *positive energy and light* miaper
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Luke63
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Re: looking for ideas
« Reply #35 on: Mar 16th, 2004, 8:40am » |
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4 nites PF now...just keepin it on when i got to sleep. I have just a cannule...not a rebreather or mask..and this really works great so far for me. Keep positive. Maybe seeya at the convention guys? Luke
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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miapet
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Re: looking for ideas
« Reply #36 on: Mar 16th, 2004, 9:31am » |
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Luke . . what do you have the o2 set at?
convention? i haven't even read that thread . . .i would love to meet everyone, and thank y'all first hand for being so supportive and helpful . . . miapet
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miapet
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Re: looking for ideas
« Reply #38 on: Mar 16th, 2004, 11:11am » |
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thanks John *smiles*
we won't be able to attend . . .if july is better . . we already have (had) plans to go to the pacific northwest (most of my family lives up there . .and i haven't seen any of them for a couple of years) . . .i wish we could go. i would love meeting everyone.
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Luke63
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Re: looking for ideas
« Reply #39 on: Mar 16th, 2004, 11:27am » |
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My concentrator really only goes to 5..but when they brought it...you can bump it up to a little over 6 lpm...works for me......seeya
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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FZfan
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Re: looking for ideas
« Reply #40 on: Mar 17th, 2004, 12:24am » |
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the concentrator, or even a regular mask at a flow rate of 6-8 will work, but to really knock one down that has a good start you really need the non-rebreather mask with a flow rate of at least 10. And you need to really seal that mask around your face. With a canola or a regular mask you will always get less than 100% oxygen. Aborting will take longer. The faster you oxygenate the blood, the quicker the relief will be.
I used to use just a regular mask at flow rate 8. It wasn't near as effective as the non-rebreather at flow rate 10. I was actually startled by how much better the non-rebreather worked.
However, if the canola all night is working for you, I certainly wouldn't change it. Maybe it's keeping your blood oxygen high enough through the night to keep the beast at bay. But if you ever get an attack that the canola won't abort, it might be handy to have a high flow regulator and a non-rebreather mask on hand.
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Luke63
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Re: looking for ideas
« Reply #41 on: Mar 17th, 2004, 9:07am » |
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Slept with the canula on last nite...PF PF PF!!!! As far as dealing with a hard onset...do what i did the first nite I got one and had the concentrator. I put the damn canula in my mouth pinched my nose shut and di it that way....and i WORKED. Now I dont know how cool that is to do...but whatever works to break the beast down...right?
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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FZfan
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Re: looking for ideas
« Reply #42 on: Mar 17th, 2004, 2:37pm » |
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Actually, sucking on it directly with your nose pinched is a nice, homemade non-rebreather mask. Hell, that's probably easier than what I go through to seal the mask around my face.
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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miapet
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Re: looking for ideas
« Reply #43 on: Mar 17th, 2004, 8:55pm » |
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Luke . . I'm really really happy for you!!
FZ . .thank you for your information too!
Well, on the plus side . . .h/as are farther apart during the day . . .we are getting anywhere from 3 -5 hours with shadows only (which is WAY BETTER then where we were!) . . .on the down side, night-time still sucks, with every hour being a rude awakening. Laying down in the day equates night schedule, so sleep time is almost non-existent for him still. BUT, we have hope . .and it feels as if this cycle may have peaked?
Thanks to everyone . . .you're all truly wonderful people! ms
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miapet
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Re: looking for ideas
« Reply #44 on: Mar 19th, 2004, 3:23am » |
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well, some more good news . .this has been the best day in weeks!! (months???) . . .shadows only . . . of course, haven't went to bed yet . . . anyway . . .woohoo!!!
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Luke63
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Re: looking for ideas
« Reply #45 on: Mar 20th, 2004, 9:18am » |
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Sounds good for the 2 of you. Keep it up. maybe he's slowin down huh? I had anight of hell last nite...I guess O2 doesn't always work. I'm not sure if Im askin stupid questions..maybe I read this but it went in one ear and out the other...typical with my brain like this lately....but has he been to a neuro yet? I just had one on Thursday...and i was prescribed something called Depakote...still seeing if it works for me yet. Stay positive ok? Wishing him PF PF PF!! Luke
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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miapet
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Re: looking for ideas
« Reply #46 on: Mar 20th, 2004, 1:05pm » |
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*hugs* Luke .sorry to hear about your night *frowns* . . .we're back up to every 3 hours . . .we kind of think the o2 has the ha disoriented, which is why the timing is all weird . . we are also hoping it's on the downhill side .. .but who knows?
neuros . . yep . .been to a few . . one pretty recently (he's out the month due to his own health issues) . . .but we try to stay away from pharmacy . . the drugs are pretty scary . . .and about 15 years ago . he tried just about all of them . . .be careful with the depakote . . . we are pretty sure that it was the past treatments that have caused the vascular problems we fight now, including high b/p, especially since there in NO family history of it . . .
anyway *positive energy and light*
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FZfan
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Re: looking for ideas
« Reply #47 on: Mar 20th, 2004, 1:49pm » |
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my experience has been that, yes o2 will fail occassionally. Who knows why? The wiley beast always has a few tricks up it's sleeve.
I am currently med free, using o2 only. It will be the 5th week of this cycle in a few days, if the beast doesn't go into remission soon.
I would say that I'm averaging about 3 or 4 attacks per week that o2 does nothing for. They are always screamers (k9-10) and, curiously, they are always during the day. I've aborted every nighttime attack.
I can live with fighting off 3 or 4 attacks/week in return for staying med free. If that average rises, though, I'll be back on the med merry-go-round in a hearbeat.
Don't give up on the o2 just because it fails a few times. If it is helping more than it is failing, it is still a good thing.
My doc mentioned depakote when we were discussing preventatives I haven't tried yet. I've decided that as long as I'm episodic, I'd rather quit trying preventatives and just slug it out with o2.
If my cycles are starting to get longer, though, I'll be back looking at prevents faster than a fart clearing a small room.
I have picked up a prescrip for Zomig ZMT. I had minor success with Zomig tabs a few years back, and thought the faster absorption of the ZMT might be worth a try. I don't intend to take it unless I run out of o2, which has happened to me a few times this cycle. I don't like flying solo without a wingman.
Let us know what the depakote does for you. Good or bad.
miapet - I understand what you mean about the beast being disoriented. I still get my 2am like clockwork, but all the other attacks are much more random than normal and usually of lighter intensity. I also experience more shadows, but they are mostly very minor.
I know drugs can be scary. It's good that your trying to fight the battle without them, as I am trying to do right now, but don't let drugs scare you to the point where you won't try them at all. I have no fear of drugs (child of the seventies  but I do enjoy the lack of side effects of not using them. Right now, oxygen is the thing that is making that possible for me.
But o2 has the disadvantage of keeping me pinned down at or near home. When o2 becomes inconvienient, drugs are the only recourse available. Finding the right one, though, is sometimes a seemingly insurmountable challenge.
Each time the beast strikes, though, we plod on with the challenge. Sure hope you guys find some relief.
Miapet, you are one helluva supporter.
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Luke63
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Re: looking for ideas
« Reply #48 on: Mar 20th, 2004, 2:20pm » |
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Hey FZ...good info. Im tryin to keep on the O2...and havent used Imitrex in over a week now...so I guess thats good. I do believe in the O2..but i think If u get too far into a HA..O2 wont even help..so u stick it out. Im like clockwork too...like between 10pm and 11pm. Last nite had 2...got up this morn started all over. enough of me tho. Hey miapet..Ill let ya know about the depakote....only had 2 so far...we'll see. You are right..I really dont wanna be on all the suck-ass drugs either....and u wrote me a message on alternative remedies....where will I find this at? Mia..keep him on the O2 if ya can...disorient the beast...thats good. I am fortunate...my insurance pays 100%..Im lucky. FZ..and mia....keep in touch guys please? Luke
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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FZfan
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Re: looking for ideas
« Reply #49 on: Mar 20th, 2004, 8:22pm » |
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Luke, I am so glad the o2 is working for you, regardless of whatever method is used to achieve the desired results.
o2 is a wonderful thing when it works, aint it. Imitrex never worked for me, but I imagine that the relief felt with o2 is similar to the relief felt with the imitrex injections. It's the most wonderful feeling imaginable to a clusterhead. Actually feeling the pain melt away. It's almost a rush. I would even go so far as to describe it as exhilarating.
One of the things I've noticed about o2 is that I no longer fear the next h/a. I can actually fall asleep much better now knowing I can kill these things with something that allows me to go back to sleep. So now instead of fearing the next attack, I now fear running out of o2!  Oh well, that seems like a fair fear trade.
I'll eventually get insurance to cover some of my costs, I just don't feel like fucking with the paperwork right now and I am fortunate in that I can afford to buy what I need. I'll turn in all my receipts along with my doctor's letter after this cycle has ended and then get a reimbursment check for probably 60%. Used to be 80%, but thanks to corporate greed, I keep paying more and more of my medical costs each year.
Anyway, I kinda like doing it this way because, when my cycle has ended, I'll get a nice check to buy myself something with, sort of a reward for making it through another cycle.
Keep on suckin' (the o2 that is! )
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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