Within the next week or so, I'll be trying a new way to prevent cluster attacks, which has been proven to be extremely difficult for me in the past. I'll be giving myself SubQ injections of Histamine Phosphate. Since Histamine can be used to induce an attack, the 'specialists' and compounding pharmists are trying to figure out a dosage to start off with that won't cause an immediate attack or other unknown side effects. This is NOT APPROVED by the FDA for ANYTHING and possible side effects are real and mostly unknown.

I was told that this has never been done before in the USA, although it has been suggested that it had been tried in Italy and possibly in Mexico, but I was not informed of results or if the 'specialists' even knew of any results.

Besides "Histamine Desensitization Therapy", has ANYONE ever heard of anyone, anywhere, doing this before ??

I'm not online often, but I will check back before I start this and will keep you all informed of results, side effects, etc.

Wish me luck ...because if this helps me, it MAY just help other sufferers too! Good Luck to you all too!

CCH sufferer - "Imitrex4Breakfast"

PS. Don't let the "Newbie" label or lack of postings number fool ya about me. I'm very well versed. Thanks :)

Where did you hear about this therapy?

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          Potter

No.  Never heard of this particular approach.

We had a chronic here a few years ago who had been through several rounds of histamine desensitization therapy.  It was an in-patient procedure, and very expensive, if I recall correctly.  (In the neighborhood of $20,000 per round of therapy.)  Results were very mixed, with relief lasting up to two weeks.  Not particularly impressive, as I recall.

Best,

George

I have found a few links about Histamine Desensitization and headaches...

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but all of them are saying this therapy is a long way from being proven to work.  One link I found claims

"The approach, which involves a series of infusions with increasing amounts of histamine phosphate, resulted in significant improvements in intractable cluster headache in 48 of 59 patients, Dr. Seymour Diamond reported during a poster session at a meeting on treating the difficult headache patient."

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But I can't find any study to back this up.

But you're not talking about Histamine Desensitization therapy anyways...  So...What are you talking about?  Desensitization, even if it doesn't work, theoretically could make sense.  You react to histamine, so you build up tolerance to it until it doesn't provoke the same reaction.

But just taking histamine injections?  I don't understand.  Who came up with this idea?  Do they have any idea as to how it could actually help?  Have they ever had any patient where they tried this or are you their first guinea pig?  This whole idea really interests me, but mostly just because it's so damn weird.  Keep us posted.  If your doc has info about studies done in other countries please ask him to pass them along! 

-Ricardo

The thing is, I DO respond to Histamine Desensitization (sorry it doesn't work for all), and some are correct in saying it doesn't last too long. I never know how long it'll last. 2 weeks to 2-3 months ... who knows? But it DOES stop the attacks for awhile. And YES, It IS VERY COSTLY, more like $25 - $30K a round. The idea is that since I DO respond to IV Histamine, MAYBE I'll respond to Histamine SubQ injections at home that would be much less costly and time consuming than desensitization therapy. (Costing about $65 a MONTH)

There HAS BEEN some studies done with Histamine SubQ (I Just learned today). However, these studies were NOT done to treat clusters and none were done in the US. Of these 2 studies I found, only one was for headache (and I will scan both studies for you all within the next 24-48 hours and post). These 2 studies are called:

(1) "Subcutaneous Histamine versus Topiramate in Migraine Prophylaxis: A Double-Blind Study"

European Neurology (Eur Neurol 2008;59;237-242) (DOI: 10.1159/000115637) Recieved May 16, 2007 - Accepted August 31, 2007 - Published Online  February 8, 2008

*This study I have printed out is 7 pages long and has references and several data tables. I will post this as soon as I can. I would like to say that the data tables show that Histamine SubQ did just as well or better than Topiramate and I'd also like to quote this: "...During the study, headache symptoms improved in both the histamine and topiramate groups, and this was evident within the first month after initiation of treatment." Further down it reads, and I quote,"...Taking into account that the efficacy of medications often become apparent while clinical practice is being carried out [30], the results obtained in this and in previous placebo-controlled studies [17] show that histamine is a safe drug with therapeutic potential in migraine prophylaxis, exercising specific mechanisms on pathophysiological processes involved in this disease."
_______________________________________________

Study (2) "Outpatient treatment with subcutaneous histamine in combination with interleukin-2 and interferon-a in patients with metastitic renal cell carcinoma: results of an open single-armed multicentre phase II study"

*I'm tired of typing already ... but I do want to note that within the name of this 2nd study, the "a" in "interferon-a" is of a special font or character that I cannot duplicate .... it just looks like an "a" though. Weather than makes a darn bit of difference or what it even means, I have no idea.

The basic reasons I obtained these 2 printouts is for dosage information ... to see what size doses they were 'safely' using. It looks like the first study says 1 - 10 ng twice a week of histamine versus 100 mg daily of topiramate. (BTW, I've heard of a 'gram', a 'mg', and a 'mcg', but what is a 'ng' ?? SUPER SMALL DOSE I'M THINKING)   

MORE TO COME WHEN I POST THESE REPORTS ...

Best Wishes To You All   :)

Imitrex4Breakfast wrote on Sep 29^th, 2011 at 7:49pm:

(BTW, I've heard of a 'gram', a 'mg', and a 'mcg', but what is a 'ng' ?? SUPER SMALL DOSE I'M THINKING)

mg = milligram = 1/1000 of a gram
mcg = microgram = 1/1000 of a milligram (i.e. a millionth of a gram)
ng = nanogram = 1/1000 of a microgram (i.e. a billionth of a gram)

So yes, a ng is pretty small!

I couldn't upload This file because of it's size, a PDF file that is 5.31 MB. I uploaded it to a website and here is a link to the first file. This may be the only file I upload unless some of you really want to see the other file. Thanks!

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Imitrex4Breakfast

Huh... very interesting. Thanks for sharing what you're doing and I'll be looking for progress reports. Good luck in your study!

Interesting subject. I like it. 

The compounding pharmacy called this morning and the med will be ready for me to pick up on Monday at a cost of $70 for a months supply and another $15 for syringes.

I was told by the pharmacist that the doctor has prescribed a "10ng SubQ injection of Histamine" everyday "for the prevention of cluster headache attacks". (lol ... that word 'prevention' still gets me!  ;)  I always think .. yeah, right. "SHOW ME THE MONEY!")

Experimental stuff no doubt, but someone has to do it !! The first injection is really going to be nerve racking as I have always heard that histamine is used to INDUCE cluster attacks. (That's my biggest side effect fear!) Wish me luck !!

I should know (and report) by Monday night if this CAUSES an attack at this dose anyways. If it does induce an attack, it would probably happen immediately I would think   :-/   And it could be a 'Bad One'   :-X     But, I gotta try not to fear it and keep an open mind as if it just might help !!

About an hour ago, I injected my first shotof Histamine - 10ng SubQ. It did not induce a cluster attack and only caused mild burning at the site of injection. Hoping it prevents cluster attacks. I'll keep you updated.

I've been taking the Histamine SubQ injections now for 8 days and I still cannot stop taking my other preventatives or the clusters will return.

I know that when I do the IV Histamine Desensitization therapy, it takes awhile for it to start helping. Often it takes a full week to feel a difference. Sometimes I'm not sure if it helped at all until I get back home and the clusters do not return with a vengance.

So, I'm still hoping that this might help but at this point, it's NOT helping. I will continue the evening injections in hopes that it has to build up in my system or something. Maybe after a few more days or another week or so, I'll see some results. If I don't see results within a total of 30 days, I will stop and call it a failure   >:(

Anyways ... so far, no good   :-/

Has the histamine treatment begun working?

Sadly, NO. The histamine SubQ injections didn't do anything to prevent my attacks. It made me feel like had a constant shadow of varying intensities 24/7, and that sucked too! It felt like a bigger dose would've only CAUSED a cluster attack. Smaller doses still gave me the constant shadows.

I've stopped the attempt at trying Histamine SubQ injections and I've personally deemed it yet another failure. The constant shadows have stopped.  I don't regret trying it and really think it was worth a 'shot' (pun intended), but it wasn't my answer in my quest to find something to prevent attacks. I really thought (again) that this may be the thing to really help since IV Histamine desensitization DOES WORK for me (temporarily). It definately works in a different way somehow.

Ready to try whatever is next !

Thanks for "taking one for the team" and trying this out.  More info is always good, and I know we all appreciate it.  Hoping you find something that works soon!

That is certainly a whopping sum of money for something that hasn't been tried, has very real side-effects and if it worked it woulodn't last long.  I applaud you for trying anything you can to rid yourself of this pain though.  I'm sorry your results were negative.