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Topic: Anyone tried Histamine ?? (Read 417 times) |
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unsolved1
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I just did the Histamine therapy twice and was wondering if anyone else here has done it.
?? ?? ?? ?? ? ?? ?? ??? ?? ??? ??? ? ? ?? ?? ? ? ??
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don
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Re: Anyone tried Histamine ??
« Reply #1 on: Jan 7th, 2005, 4:20pm » |
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How you doing with that?
Still PF?
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unsolved1
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Re: Anyone tried Histamine ??
« Reply #2 on: Jan 7th, 2005, 4:49pm » |
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The first time I did it I had about 3 weeks PF then the HA's returned.
I did it again and was PF for 2 weeks then had a few HA's breakthrough ... now I am PF again and hoping it last forever !!
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Kris_in_SJ
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Re: Anyone tried Histamine ??
« Reply #3 on: Jan 7th, 2005, 8:08pm » |
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I'm hoping it lasts forever for you also.
I think you might be a first on the board for this treatment. The info I've read indicates that it's successful for "some" patients. Hopefully, you're one of them.
Many Hugs,
Kris
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Pinkfloyd
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Re: Anyone tried Histamine ??
« Reply #4 on: Jan 7th, 2005, 11:25pm » |
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on Jan 7th, 2005, 8:08pm, Kris_in_SJ wrote:| I think you might be a first on the board for this treatment. Kris |
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I used it 4 times. Worked very well the first two times. Less well the 3rd although I did improve enough to allow preventive meds to work very well until the cycle ended. The 4th time, didn't work so well but the two weeks with clusterbuds always helped a great deal with the mental aspects. Sorta miss the meetings around the microwave at 3am.
Do they still have the smoking room? 
Bobw
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unsolved1
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Re: Anyone tried Histamine ??
« Reply #5 on: Jan 8th, 2005, 7:09am » |
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Yes Bob, they still have the smoking room. It's smaller than my closet (And I don't have a big closet). The microwave is still there too. 
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hubbydo
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Re: Anyone tried Histamine ??
« Reply #6 on: Feb 18th, 2005, 5:38pm » |
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My hubby had the treatment 5 years ago--we think we may be heading back to that treatment. Let me make sure we are talking about the same thing: it was a 22 bag intraveneous drip that took 11 days to get into his system. I admitted him into the clinic as an inpatient--he was begging me to kill him--to take him out of the pain--and tearfully, I had to leave him there, alone. I had two little babies at home down state. I came back to visit 3 days later--he was up and brushing his teeth!!! When I got to bring him home, he looked like he had had a face lift--10 years came off his face. He was a new man. Now, the clusters are starting again--and although we are on top of them more now then we were then, we may be looking at the treatment again. The big thing is--the cost. Last time, because he was an inpatient, our bills came to right under $50,000. It was financially devistating to a young family. Of course the insurance wouldn't help--the treatment is not approved by the FDA. However, I believe that if we voluntarily go in, as an outpatient and stay nearby, our cost could be as little as $12,000. I think it is worth every penny!! -----Please respond
Andrea
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vig
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Re: Anyone tried Histamine ??
« Reply #7 on: Feb 18th, 2005, 6:06pm » |
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ho ho ho holy crap batman....
DDDDDDid she say fiddy thousand clams?
$50,000
wow.
$10 for a syringe and $12 for a mycobag sounds pretty good right about now.
!
alright, so THIS cost under $30 to make and made several months worth of medicine for more than one person.
(~$75 made 4 of these)
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| « Last Edit: Feb 19th, 2005, 1:34pm by vig » |
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Pinkfloyd
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Re: Anyone tried Histamine ??
« Reply #8 on: Feb 18th, 2005, 10:25pm » |
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on Feb 18th, 2005, 5:38pm, hubbydo wrote: Last time, because he was an inpatient, our bills came to right under $50,000. It was financially devistating to a young family. Of course the insurance wouldn't help--the treatment is not approved by the FDA.
Andrea |
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50K...??
So you were the one that took the room with the view.
That, and extra bagels add up.
Yep Andrea, it's the same thing, same place.
Many insurance co's DO pay for it. Try getting pre-approval and if you have trouble, have Diamond speak to them on your behalf. It doesn;t have anything to do with FDA approval. The cost of 22 bags of Saline and 5% histamine solution is cheap.
He's being hospitalized for cluster headaches. Just because they give him one thing that they don't recognize on their formulary shouldn't preclude being covered for the stay.
They've had to deal with many ins. co's. They know what to say. Make 'em say it for you.
good luck
Bobw
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"Nothing is so firmly believed as what we least know."
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[Michel de Montaigne
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www.obscuredview.blogspot.com
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Pinkfloyd
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Re: Anyone tried Histamine ??
« Reply #9 on: Feb 18th, 2005, 10:31pm » |
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on Feb 18th, 2005, 6:06pm, vig wrote:
wow.
$10 for a syringe and $12 for a mycobag sounds pretty good right about now.
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Yeah but don't forget to add in the additional entertainment expenses. All those extra dinners out, movies, concerts....and it's not tax deductable.
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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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BikerBob
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Re: Anyone tried Histamine ??
« Reply #10 on: Feb 19th, 2005, 12:34am » |
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on Feb 18th, 2005, 6:06pm, vig wrote:ho ho ho holy crap batman....
DDDDDDid she say fiddy thousand clams?
$50,000
wow.
$10 for a syringe and $12 for a mycobag sounds pretty good right about now.
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LOL... Maybe $17 for one 10cc syringe and $50 for 4 mycobags.
Bob
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sandie99
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Re: Anyone tried Histamine ??
« Reply #11 on: Feb 19th, 2005, 3:26am » |
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I hope it keeps on working for ya! 
Hmm... should I mention it with my doc the next time I'm seeing him...
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jasckorohod
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Re: Anyone tried Histamine ??
« Reply #12 on: Feb 19th, 2005, 11:00am » |
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Spent 2 weeks in the Diamond Headache Clinic in Chicago in 1997-tx was histamine infusion. The best part of the treatment was the smoking room. Had a 15 minute exam by Dr. Diamond upon admission, didn't get examined again. Histamines didn't work; was also prescribed cocaine drops (didn't work either)-a urine test came up positive for cocaine (of course), had a drug and alcohol counselor see me, accused me of being a cocaine addict (he never read my file). When I was there the only activity was "Ask the Doctor", a one hour a week session where we could as a doctor questions. Although I was not any better, one day Dr. Diamond (the female one) stopped by and said that I must be better because I wasn't wearing sunglasses, so I was discharged the next day! Later learned from my insurance company that Diamond attempted to charge excessive fees, my company wouldn't pay so I was d/c'd. My insurance warned me that Diamond might try to hit me for the extra charges, which they did-sent the bill to my insurance and that ended that. I flew there from out of state and staff wanted to make me a follow up appointment-it would have been the same 15 minute exam that I had when I entered, so I declined; the staff member went into schock! I met people there with CCH who had been through the tx 3,4, 5x or more, sometimes staying for a month or more. They never got any better. I believe that histamine tx is a waste of time and money, but a money maker for the clinic. I get better treatment from my outpatient neurologist. In 1997 it cost my insurance company $15,000 for my two weeks-is it up to $50,000 now? Incredible!
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