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Topic: looking for ideas (Read 1781 times) |
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miapet
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Re: looking for ideas
« Reply #50 on: Mar 20th, 2004, 9:25pm » |
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Hey guys . . .I agree . .keep up with the o2. We are lucky to have the machine for home . .and bottles with a regulater thingy to haul around . . . unfortunately, this cycle is taking sooooooooo long . .he's exhausted. Oh well, it's going to get better!!!
As for not shutting the door on drugs . .it's pretty much going to have to be the last resort . . .years ago, he was a guinea-pig for a famous doc in our area . . .calan, wygane (sp?), verapamil, lithium, depakote, prednisone, imitrex (pill form, there wasn't an ijectable at the time) ummm, lord, the list goes on . . .currently we did a prednisone taper with cafergot . . .worked for a couple days, but they are so close together the 'safe' weekly dosage for cafergot wasn't enough . . .o2 is what we have . . and it works . . .soooooooooo . ..
today, we are still at every 3 hours . . .and now it's dark . . .I try to stay up with him . . .last night i was incoherrent *L* I dont know what I was saying, but it made no sense . .and all I could do was laugh *L* shoot, I felt like a kid again (staying up all night to watch scary movies or something) . . .
luke . . .i'll message you with the right thread . ..
*positive energy and light* i have you in my thoughts . . .working towards p/f for all of you along with D. *smiles*
miapet
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Clusterbusters Rock
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miapet
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what doesn't kill me makes me stronger
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Re: looking for ideas
« Reply #51 on: Mar 21st, 2004, 10:17pm » |
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So, I'm almost superstitious . . .do I dare write it down? Today has been a great day!! *YAY* I don't know what it means . . .yet . . . but I really really really hope we are on the downhill . . .
You all have shared so much with me . . and helped in a million ways . . .I'm glad to share a good day with you . . .I only hope it has been good for all of you too.
miapet
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Clusterbusters Rock
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FZfan
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Re: looking for ideas
« Reply #52 on: Mar 21st, 2004, 10:55pm » |
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great news mia. glad to hear it. so do you guys think has the cycle been broken? or is it too early to tell?
Keeping my fingers crossed for ya.
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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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Luke63
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Re: looking for ideas
« Reply #53 on: Mar 22nd, 2004, 9:15am » |
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I hope you're on the downside...I really...really...really...do!! We're all cheering for the 2 of you. KICK THE BEASTS' ASS!!!!!!!! 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 #54 on: Mar 22nd, 2004, 12:53pm » |
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Well, the cowardly beast hit us last night . . .3 times between 11:00 pm and 5:00 am . . .today has just been shadows . . . .
We are definately working on kicking it's ass (sorry, but by this point, I'm done being nice about the jerk!) . . .and I really believe the 02 has 'it' all disoriented . . . so, we'll keep on keeping on . . .
*hugs* *positive energy and light* and pain free energy to all of you too!
Thanks for being here for us . . .I told D last night, that this is such a safe place and how supportive everyone is. He hasn't been able to spend time on the computer during this cycle . . .but last night he was able to read through our posts . . .you all gave him some much needed smiles.
miapet
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Luke63
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Re: looking for ideas
« Reply #55 on: Mar 22nd, 2004, 6:48pm » |
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Anything at all you guys need..let us know..we're here.  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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Charlie
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Re: looking for ideas
« Reply #56 on: Mar 24th, 2004, 3:27pm » |
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Glad things are looking up 
Here is the link to my technique if you haven't looked it over. I hope you have never a reason to use it.
http://www.netsync.net/~charlies/
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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miapet
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what doesn't kill me makes me stronger
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Re: looking for ideas
« Reply #57 on: Mar 24th, 2004, 9:04pm » |
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Charlie. .thanks for sharing the link. actually, in the past, I have done things like that . . .but, I never thought of having D do anything like that. . .
The beast hasn't left us . . . I have just had weird work and car issues . . .
We are still using o2 . . .still shadowing . . .h/as are mostly at night right now . . . forget laying down . . .his head feels as if it ways 1,000 pounds . . .
I know that ANYTHING stressful will bring one on . . .good or bad makes no difference . . .stress does it . . .I hate when I feel as if I add to it . . . I just want to protect him . . . and make it go away . . .
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Clusterbusters Rock
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miapet
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what doesn't kill me makes me stronger
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Re: looking for ideas
« Reply #58 on: Mar 24th, 2004, 11:21pm » |
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This is from D . . .he's dictating as I type:
Greetings. First, and foremost, I want to express my sincere appreciation for the care each and every one of you have shown my miapet.
It has never been a strong suit of mine as a supportive or in anyway expressing condolences for people, hopefully this is a wake-up call for further improvement on my part. I would like to think I am an agreeable and personable man of good will. It is no defense to suffer from these headaches and not be a gentleman of civility. I will gladly share any knowledge gleaned from the experiences of this affliction of ours.
We met a fellow member of this site. After a nice long chat, I realized the value of communicating with others who share clusterheadaches. This young man gave far more than he received in return without any expectations for himself. I can only hope that each of you can meet quality people who know how to establish a rapport and genuinely affect you.
We hope to remain members in good standing with this community, and if either of us can do anything for any of you, just let us know.
Sincerely, with regards,
D
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Clusterbusters Rock
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miapet
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what doesn't kill me makes me stronger
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Re: looking for ideas
« Reply #59 on: Mar 28th, 2004, 12:07pm » |
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We're still here . . .I've been reading and keeping up . . just not posting much . . .D has good days and bad . . .he actually had a couple of days where he only got hit if he tried to lay down or sleep . . . but, he's had 7 since 7:00 yesterday morning . . .pretty good ones too . .. BUT, on the good note: o2 kicks butt! *g* and they are gone in about 7 to 10 minutes . .still too many still too often . . but at least not as long!!!
FZ . . .how are you? on the downhill side (I hope!)??
Luke . . and you too? downhill?? (I hope!)
*positive energy and light* to everyone *smiles*
miapet
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Clusterbusters Rock
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FZfan
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Re: looking for ideas
« Reply #60 on: Mar 28th, 2004, 7:12pm » |
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Hi mia, sure glad D is getting some help from o2, if nothing else at least there's no side effects, right?
I'm pretty sure Luke is still in cycle, but mine ended a week ago. Thanks for asking about us.
It was a typical cycle for me, only about 5 weeks. I gotta say that hanging out here has helped make this the easiest cycle to deal with I've ever had.
I've mentioned this (the cycle ending) in a couple of other posts, but don't want to make a big deal out of it, plus, I like to wait about a week after the last h/a to be absolutely sure the beast has gone into hibernation. It has now been a week and a day, so next friday I will celebrate with a few beers.
Sure wish D's beast would go hibernate. Hope it's soon. Take care you guys. Keep us posted.
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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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what doesn't kill me makes me stronger
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Re: looking for ideas
« Reply #61 on: Mar 28th, 2004, 9:24pm » |
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FZ . .woo hooo!!!! I read (somewhere) that it looked like you were getting relief . . .*smiles* . . .I'm soooo happy for you!!!
Thanks for the wishes/vibes . . .we can really use them right now *smiles*
miapet
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Clusterbusters Rock
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miapet
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Re: looking for ideas
« Reply #62 on: Apr 4th, 2004, 11:42am » |
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*YAY* D has been sleeping at night (well, he still stays up late, but he's sleeping (and getting more than me!!) AND, for the first time in more years than we can count . . he hasn't been waking up in the (his) morning with a h/a!!!!!!!!!!!!!!!!! yesterday he had a k1 . . .and he's had shadows . . .but i think (knock on wood) that we may really be on the downhill!!
I'm crossing my fingers that we not only break the cycle-with-in-the-cycle, but also the cycle-that-never-ends!!!
*HAPPY DANCES*
Thank you, everyone, for all of your support, ideas, and vibes!!
*positive energy and light* and wishing you all pfnad
miapet!
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Clusterbusters Rock
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FZfan
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Re: looking for ideas
« Reply #63 on: Apr 4th, 2004, 10:24pm » |
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more progress, more good news. Great to hear mia. Hope D just gets better and better.
Still pouring on the vibes for you guys. 
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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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what doesn't kill me makes me stronger
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Re: looking for ideas
« Reply #64 on: Apr 5th, 2004, 11:41am » |
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Thanks FZ . . .I guess I should know better than to say we're doing better . . .as soon as I posted that . ..WHAM . .D got hit with a couple of 8s . . .and some 5s . . .so we're back on watch . . .next time, I'll just say something like, well, we haven't called for more o2 yet .. .
Anyway, I'm glad you're still rocking on *g*
miapet
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Clusterbusters Rock
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FZfan
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Re: looking for ideas
« Reply #65 on: Apr 5th, 2004, 4:54pm » |
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DAMMIT! Oh well, I don't believe in jinxes. Gotta go with the flow. 3 steps forward and two steps back is still progress.
Still, the stubborness of D's beast is starting to piss me off! Keep up the fight, there's better days ahead.
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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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Turts
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Re: looking for ideas
« Reply #66 on: Apr 6th, 2004, 4:05am » |
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This is not for everybody, and I am yet to try it yet, simply due to availability:
however in response to your original question
Quote:| .but I need to break the cycle |
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www.clusterbusters.com
Turts
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'I'm very brave generally,' he went on in a low voice: 'only today I happen to have a headache.' (Lewis Carroll)
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miapet
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what doesn't kill me makes me stronger
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Re: looking for ideas
« Reply #67 on: Apr 6th, 2004, 8:32am » |
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FZ,
yeah . . .this one is really pissing me off too . . . D is chronic, so we are used to having a schedule of h/as, but this cycle with-in is getting really old.
Turt, thank you for the clusterbusters url. We (D and I) fully support clusterbusters.
miapet
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Clusterbusters Rock
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Dover
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Re: looking for ideas
« Reply #68 on: Apr 6th, 2004, 9:00am » |
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I have had what they call restless leg syndrome for years. It hits me at night and when I travel by car for long distances. Anyway, I asked my doctor for something to help with this as I was going out of town by car and didn't want to deal with another problem on top of the CH. I also wanted it because the one night of sleep that was not interupted by CH was interupted by restless legs. Anyway, he gave me Quinine. This is the stuff in tonic water.
Before taking quinine, I was have 2-3 CHs per day in the 7-8 range. Now, I am having 1-2 CHs per day in the 2-4 range. Before starting the Quinine, I was taking 200 mg Imitrex per day and crying out for more. Now, I take 50 mg (half tab) whenever a CH starts crying for attention.
One warning, quinine can cause problems for people with heart problems and has some other side effects you should discuss with your doctor.
I am not completely sure why this works but for me it does. I suspect that it works for the same reason Botox injections work for some people. Anyway, try it. You can either get a prescription or start out by drinking tonic water.
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miapet
New Board Hall of Famer
what doesn't kill me makes me stronger
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Re: looking for ideas
« Reply #69 on: Apr 6th, 2004, 12:08pm » |
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Thanks . . interesting . . .my parents used to take quinine for restless leg . .then the FDA decided you had to have a script for it . . .I'll make the suggestion.
miapet
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Clusterbusters Rock
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