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Topic: histamine infusion (Read 295 times) |
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nmstevens
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histamine infusion
« on: Mar 13th, 2003, 9:17am » |
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I now find myself in a particularly stubborn cluster phase -- my doctor prescribed gradually increasing doses of Verapamil and Topamax -- with the result that the headaches would sort of stop -- but in a way that still left me vulnerable to triggers like light and noise. So I'd up the dose, break the cycle (sort of) for a few days, then something would trigger a headache, I'd be back in the cycle, and my doctor would up the dosages marginally -- again -- with the same results.
Finally (more or less) the cycle was broken -- I was able to wean myself off of the Topamax, but when I tried to do the same with the Verapamil -- bang, back in the cycle again.
Doctor prescribed lithobid -- didn't do anything. She prescribed predinsone -- worked for around three days -- now back in the cycle again.
Now she's talking about my checking into the hospital for two to five days for what's known as a "histamine infusion."
I did a web search and about the only thing I can find out about it is that Aetna doesn't cover it (not my insurance company, but it suggests that other companies might also not cover it).
Does anyone have any information about this procedure and what's involved in doing it?
Also, since it's clear that "going off" of these drugs clearly has the capacity to bounce you back into the cycle -- and since I'm already back in a cycle even with taking them --
-- is there any medical reason why I should keep on taking them? That is, apart from bringing the headaches back (which I've already got) - are there any dangers associated with abruptly stopping these medications?
Any help would be greatly appreciated.
NMS
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Ueli
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Hi nmstevens,
You must realize that neither Verapamil nor Topomax can end a cluster cycle. All they do is to dampen down the attacks, to zero if you are lucky, but the cycle takes its natural duration. So, if the attacks come back when you tapper down the meds, that simply means your cycle hasn't ended yet and you have to continue to take your meds.
Prednison can end the cycle, but that happens not often. Therefore, a Prednison burst usually only serves to give a short holiday until Verapamil and/or Topomax kick in.
Histamine was once upon a time thought to play a major role in clusters, but not any longer. A "histamine infusion" would make things worse, if anything. However, a histamine desensitization program, as indicated for severe cases of allergy, is offered by greedy clinics. It takes 5 days, cost you 20 grand and the success rate is only slightly above zero. 
PFNADs
Ueli
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Pinkfloyd
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Re: histamine infusion
« Reply #2 on: Mar 15th, 2003, 1:53am » |
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on Mar 13th, 2003, 9:17am, nmstevens wrote:Now she's talking about my checking into the hospital for two to five days for what's known as a "histamine infusion."
NMS |
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I've had a histamine "desensitization" three times.
Each time involved a total of 23 IV bags of histamine/saline solution, over a 12 day period. 2 bags a day.
The first time, the cyclce broke after about a week and was gone for a year.
The second time, the cycle again was broken about ten days into the treatment and didn't return for 6 months.
The third time, the cycle was not broken but weakened and additional prevents, including verapamil were able to control the cycle much more easily.
All three of the cycles in question were "bad" cycles at a point that I could no longer function and my wife had hidden all sharp objects.
My insurance did cover it, thank goodness because the total bill was about 35 grand each time. But at 80% coverage and a healthy deductible, it still cost me plenty.
I have seen this treatment work for many people. The largst majority of those in the hospital with me had their cycles broken. OTOH, I have spoken with and seen people that had no luck with the treatment. I also can't imagine a 2-5 day regimen working. Pumping the histamine too quickly does trigger clusters.
We would always try to push it though as quickly as possible (we controlled the machines and wanted to get home) and could tell almost immediately when we had it set too high.
BobW
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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
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Riccardo
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Re: histamine infusion
« Reply #3 on: Mar 17th, 2003, 12:33pm » |
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Wholeheartedly agree with UELI.
(Despite the fact, UELI, that a half of neuros in Italy thinks that Verapamil SHORTEN the cycle...... yes they do!
Is very sad to deal with those neuros. And they have //the same 50%// the idea that the max dose is 480 mg/die)
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Riccardo OUCH-Italia
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