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usnad
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I push my fingers into my eyes......
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I push my fingers into my eyes
« on: Aug 2nd, 2004, 8:20pm » |
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"I push my fingers into my eyes, its the only way that slowly stops the ache"....... but its made of all the things i have to take, Jesus it never ends...... 
These are lyrics to a song by Slipknot. Every time I wake with the start of the comming of the beast this song runs through my head,, along with other things.
Today I went to the doc again to get treatment. I sucessfully aborted one with O2 last year and just the other day also when it was handy at work, so I told him I want it prescribed. He sez he cant, its dangerous, insurance wont pay, etc. I told him I'll get the black market O2, filtered welders oxygen, he doesnt even crack a smile and comments "it would work", then I tell him I'll mug the old people comming out of Walmart with their O2 carts, drive by O2 robbery. 
He prescribes Zomig 2.5mg to abort and Nifedipine (adalat) 30mg daily to prevent. I took the Nifedipine to get things started and have had a mild (compared to the others) headache all day, side effect to the start of the treatment?
I have been getting my uninvited night visitor about every other night but I am expecting a visit tonight since this beast seems to get pissed off when combated. When they were aborted with O2 they would come back later with a vengence.
I sent the link to this site to my wife, she has no clue about these headaches. When she was diagnosed with MS years ago I did all kinds of research and was very supportive, she has since went into full remission and was possibly mis-diagnosed. I actualy prayed that she be cured and let me have the illness, well I guess I got my wish with these damn headaches. It happened about the same time too, what a coincidence.
I'm so glad your all here, not in a sense that the beast visits you but, you know what I mean.
Dave
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IndianaJohn
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Into the jaws of the Beast we ride!
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Re: I push my fingers into my eyes
« Reply #1 on: Aug 2nd, 2004, 8:57pm » |
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Welcome usnad,
Sorry you have to be hear. I've had CH for the last twelve years and only recently found this site. Research it, check the message boards. There are alot of very knowledgable people here and alot of great advice and strategies in dealing with beast.
Best wishes
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Did my brains fall out or is this headache over?
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Kris_in_SJ
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There's no place like home.
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Re: I push my fingers into my eyes
« Reply #2 on: Aug 2nd, 2004, 9:00pm » |
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Hi Dave,
Sorry you are suffering, but I'm glad you found us. Your wife will find great support here too. I've given this address to my husband and others I love. Don't know if they've visited yet, but they're wonderful about this anyway. By the way - you need to tell her - she has a right to know (and help you with) what you're experiencing.
I'm curious about your doc's reluctance to prescribe O2. Yes, it's expensive (if obtained medically), but insurance companies are getting much more savvy about its use for CH. You might just call and investigate the cost to you.
I'm not familiar with the prevent you're taking - I'm a Verapamil girl, myself - but you might also suggest that he consider a Prednisone taper. It often helps stop the HA's until the prevents start to work.
The most important thing - if your doc isn't on the same wavelength as you ... if he's not listening and doesn't seem to understand - request a referral for a second opinion (preferably from a neurologist who specializes in CH). Each sufferer is different, but we all need a doc who will work with us instead of against us.
Many hugs and wishes for PFDAN.
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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usnad
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I push my fingers into my eyes......
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Re: I push my fingers into my eyes
« Reply #3 on: Aug 2nd, 2004, 9:11pm » |
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I have had these for the last 5 years and this is the first time I'm getting treatment (adictded to pain and punishment).
First I'm active duty Navy and I didnt want to jeopardize my career, but alas I have lost it anyway. I used to be a flight engineer (14years) till they grounded me forever.
The Nifedipine is like verapimil (so I'm told) but I only have to take it once a day. Ita a calciun channel blocker used for high blood pressure and angina.
I change docs in the Navy like some people change underwear but this one seems to know about clusters. I will loose him on a couple months too.
Maybe they are a bit slow to realizing the O2 thing but we will see if this treatment works.
Buy the way I tries the tea thing and the mild ha went away, just wont be able to sleep 
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don
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Re: I push my fingers into my eyes
« Reply #4 on: Aug 2nd, 2004, 9:44pm » |
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Glad to hear you went for treatment. Not so good for K-Mart shoppers.
Now go snowshoeing at 3 AM in a full moon.
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ExplodingEyeBall
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Re: I push my fingers into my eyes
« Reply #5 on: Aug 3rd, 2004, 9:50am » |
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usnad....
Stick around here.
Pay attention to what you hear on this message board. The people here KNOW first hand what you are going through and will bend over backwards to help you.
Some of the things they suggest may sound a little bit off the wall if not even a little bit against the law (Shrooms anybody???), but every body has their own unique way of dealing with CH.
My own abortive that seems to give me some relief without meds is caffiene and nicoteine. If I wake up in the middle of the night with a beast, I drink masses of coffee and chain smoke.
By all means, do everything you can to get the O2. This is probably the most highly reccomended treatment here.
I hope you find some help and support here.
Welcome to the family.
Pat
BTW:You will also find that the people here have a very weird sense of humor and can be a bit sarcastic at times.
Don't take it personally. We are a very strange but loving bunch.
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| « Last Edit: Aug 3rd, 2004, 9:52am by ExplodingEyeBall » |
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Just poke out my eye and get it over with!!!
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marfanoidus
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I love YaBB 1G - SP1!
 
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Re: I push my fingers into my eyes
« Reply #6 on: Aug 3rd, 2004, 3:38pm » |
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Hey there. Sory you're going through it.
Before long, people on this site will refer to what I am about to say as the 'Marfanoidus mantra' - since I tell it to most people who are battling with their docs:
CH is rare (most numbers say fewer than 1 in 1000 people have it). DO NOT ASSUME your doc is up to date on its treatments.
There is a very real possibility that you may be the only CH patient your doc will ever see. So don't think he can treat this problem as effectively as he can treat something he see's in his office 18 times a week (like the sniffles or STDs).
If you want help, you MUST, MUST, MUST find a physician who is versed in current CH therapies, or one who is willing to learn it all real freaking fast.
Remember, we're talking about the worst phyisical pain you've ever felt, right?
Find someone who knows what the hell they're doing.
BTW, never forget what a doctor's business is called - a 'practice'. I don't want anyone practicing on my CHs!
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Sometimes "What doesn't kill you" makes you wish it had.
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Biker
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OUCH!!!!!!!!!!!
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Re: I push my fingers into my eyes
« Reply #7 on: Aug 3rd, 2004, 5:54pm » |
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I feel for ya. I have lost jobs cause I cannot preform during an attack. Oxygen????? I use the V.A. hospital for my meds. They give me verapamil, and imitrex. Never enough imitrex. No way would they perscribe oxygen for me. The VA emergency room will give oxygen, but nothing to keep at home. I resorted in going to the welding supply shop. Filters???? I suppose I should get some sort of filter, but when Im having an attack, I could care less about a filter. Besides, I have seen the welding supply shop deliver oxygen to hospitals, and I have never seen any kind of filter in those lines.
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Ride it like ya stole it.
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Bob_Johnson
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Re: I push my fingers into my eyes
« Reply #8 on: Aug 4th, 2004, 2:55pm » |
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Oxygen is now accepted as a first-line response and a doc who does not know that--sounds like he is not up to date. I'd be casting about for someone else who is more sophisticated.
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Bob Johnson
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lionsound
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breathe
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Re: I push my fingers into my eyes
« Reply #9 on: Aug 4th, 2004, 8:56pm » |
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WOW! you must be a very good pain wrangler if your wife doesn't, or didn't know.
Sorry you have to suffer. Wishing you pfdan.
-lionsound
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mynm156
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hope life isn't a big joke, because I don't get it
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Re: I push my fingers into my eyes
« Reply #10 on: Aug 5th, 2004, 12:25pm » |
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Sorry to hear you are in nightly battles bro. I hope that you win though.
Good Vibes
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"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
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E-Double
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Are we ourselves?
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Re: I push my fingers into my eyes
« Reply #11 on: Aug 5th, 2004, 12:45pm » |
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Hang in there brother!!!!!!!!
All here for ya so welcome to the family!
pain free days ahead!
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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usnad
New Board Newbie
I push my fingers into my eyes......
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Posts: 11
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Re: I push my fingers into my eyes
« Reply #12 on: Aug 5th, 2004, 8:24pm » |
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Please everyone dont be sorry, I'm not looking for sympathy. Your all here for the same reason too.
Hey being one in a thousand is special and I want to be a member of a forum with other special people
I am finding a ton of info, ideas, rituals, copping methods etc... I'm going to start with something a bit different. I have been looking into voodoo dolls. If I can pass these HAs to someone really deserving, like politicians and insurance adjusters. I'm working with the small needles first. powerful medicine................
I might come off as a smart a$$ but I'm still going to keep my sense of humor no matter what.
Well shadows tonight, hey can you put disolving Zomig in your eye for releif? 
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Kris_in_SJ
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Re: I push my fingers into my eyes
« Reply #13 on: Aug 5th, 2004, 8:48pm » |
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Though the Voodoo doll thing sounds kind of interesting, you might first want to send a PM to Superpain. He can explain exactly how to obtain and use welder's O2 in an effective and safe way.
Speaking as someone else's significant other ... have you told your wife yet?
Hugs,
Kris
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| « Last Edit: Aug 5th, 2004, 8:49pm by Kris_in_SJ » |
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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