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HISTAMINE OVERLOAD!  I found the cause for my CH (Read 7513 times)
brilmont
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HISTAMINE OVERLOAD!  I found the cause for my CH
Sep 10th, 2008 at 4:46am
 
I feel your pain!  I'm 47 years old, suffering from CH for the last 22 years.  The last 2.5 years have been chronic.  Lots of doctors including neurologists and endocronologists and they can't find anything.  Most don't even try, only to prescribe an anti-seizure med and a pain med.  I've done alot of my own research especially in the last 2.5 years since I haven't been able to do much else.  I finally figured it out just recently.  HISTAMINE OVERLOAD!  Please do some research on histamine intolerance.  Try a low histamine diet for at least 3-6 weeks while you're in a cycle.  NO CHEESE, TOMATOES, CHOCOLATE, RED WINE, SPINACH, STRAWBERRIES, ETC.  Try an Anti-histamine (ie. Zyrtec, Claritin, Benadryl) to help block the histamine while dieting.  I think this will help many of you as it has me.  I've included a few articles to get you started on your research. GOOD LUCK.

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Pixie-elf
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #1 - Sep 10th, 2008 at 7:49am
 
I'm histamine intolerant, and none of that has helped me with the cluster headaches at all. Sad I'm glad it worked for you.

I'm on Ketotifen tablets (had to buy it from Canada) and that has changed, and most likely saved my life. Before that I used an epi pen at least once a week. Haven't had to use one in 9 months now. Cheesy
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As far as I'm concerned, cluster busting has been the best treatment I've tried. No migraines since I started it, and my hits have gotten so much better. Wanna know more?
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AlienSpaceGuy
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #2 - Sep 10th, 2008 at 11:38pm
 
Quote:
Lots of doctors including neurologists and endocronologists and they can't find anything. †Most don't even try, .....
Of course they don't find anything. To do so, they would have to cut deep into your brain, to find your hypothalamus differs from the average. The cause of your CH is a defect in your hypothalamus, not a histamine overload.

However, histamine, being one of the many neurotransmitters, can in abundance trigger a cluster attack.

Your list "NO CHEESE, TOMATOES, CHOCOLATE, RED WINE, SPINACH, STRAWBERRIES, ETC." reminds me strongly of the infamous meegraine trigger list. I've never been triggered by any of these (well, I can't vouch for spinach, I don't eat that weed).

For me a combination of good ripe Swiss cheese and alcohol is a sure fire trigger. With the presence of alcohol the uptake of histamines is speeded up a hundred fold. The resulting histamine peak is for me high enough to trigger an attack of 2 - 3 hours.


† † † † † † † † †Smiley


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Pixie-elf
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #3 - Sep 10th, 2008 at 11:58pm
 
AlienSpaceGuy wrote on Sep 10th, 2008 at 11:38pm:
Quote:
Lots of doctors including neurologists and endocronologists and they can't find anything. †Most don't even try, .....
Of course they don't find anything. To do so, they would have to cut deep into your brain, to find your hypothalamus differs from the average. The cause of your CH is a defect in your hypothalamus, not a histamine overload.

However, histamine, being one of the many neurotransmitters, can in abundance trigger a cluster attack.

Your list "NO CHEESE, TOMATOES, CHOCOLATE, RED WINE, SPINACH, STRAWBERRIES, ETC." reminds me strongly of the infamous meegraine trigger list. I've never been triggered by any of these (well, I can't vouch for spinach, I don't eat that weed).

For me a combination of good ripe Swiss cheese and alcohol is a sure fire trigger. With the presence of alcohol the uptake of histamines is speeded up a hundred fold. The resulting histamine peak is for me high enough to trigger an attack of 2 - 3 hours.


† † † † † † † † †Smiley




That is part of the migraine and histamine intolerance list, however, it's not the full one for histamine intolerance. It's just foods high in histamine.

These things are to be avoided. I haven't seen people mentioning a lot of these things as triggers for their Cluster Headaches though...

Histamine Rich Foods(Copypasta'd from a PDF):
Fish: Mackeral, Herring, Sardine, Tuna.
Cheese:Gouda, Carnernbert, Cheddar, Ernmental, Swiss, Parmesan
Meat: Fermented Sausage, Salami, Fermented Ham
Vegetables: Sauerkraut, Spinach, Eggplant, Tomato Ketchup
Wine:
White Wine
Red Wine
Top-Fermented Beer
Bottom-Fermented Beer
Champagne
Red Wine Vinegar
Citrus fruit, Papaya, Strawberries, Pineapple, Nuts, Peanuts, Tomatoes, Chocolate, Fish, Crustaceans, Pork, Egg White, Additives, Licorice, Spices.

Up til I wound up on the ketotifen, every time I ate an orange, my nose would swell up and I'd get congested. It was horrible. Now? I can eat as many oranges as I like.

I haven't found -any- of these foods to trigger my CH yet...  My CH tends to trigger my histamine intolerance though, because if I'm stressed, my body produces more histamine, which breaks me out in hives. And the pain of a cluster headache can do that. However, I don't think I'll try any of these in combination if I can avoid it...
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As far as I'm concerned, cluster busting has been the best treatment I've tried. No migraines since I started it, and my hits have gotten so much better. Wanna know more?
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MR_FLOOR
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #4 - Sep 11th, 2008 at 12:58am
 
Hi brilmont.
 
     About 15 years or so ago I was introduced to a treatment called histamine desensitization. This treatment is offered by Diamond Headache Clinic in Chicago (my clinic)I have been through this treatment 2 times the first time my CHs left me for almost 8 long years. Now mine you I have been chronic since the ripe old age of 14 getting 3 to 4 hits a day for 15 years when I first showed up on Diamonds front door and then a year later I went to this treatment and for 8 years almost no hits (you can see why there my doctors) shit I thought I was cured but then they came back so I went in for the second time and that time it lasted about 3 years not as good but still pretty damn good.

     So I guess what I'm saying is it worked for me, that don't mean it would work for everyone.




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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #5 - Dec 3rd, 2008 at 2:11pm
 
Hey Dave!!!

I am new to the site but I am also a patient at Diamond!!!!  Who is your Dr. there?  They are a great medical center to work with.  This is my 3rd year as a patient there and they have helped me control my CH.  I will ask about that treatment the next time I am there, I notice a lot of sneezing during the day and then attacks at night. 

Thanks for your input!!

Laura
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #6 - Dec 3rd, 2008 at 2:32pm
 
Hello Laura:

As a former patient of Seymour Diamond, MD, I've been through that diet (no help) and had a couple of sessions of histamine desensitzation, and none of those worked FOR ME.

I hope that you get better results, like Dave did.  CH are a tough beast to beat.  Have you tried high flow Oxygen to abort your attacks?

Wishing you well,

Ray
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #7 - Dec 3rd, 2008 at 2:51pm
 
Brilmont,

You came on here back last March with a whole different theory, wrote a whole page about it and then ended it by asking if we keep the TV on when we sleep.

Many responded but you had disappeared. Today you come back with a different theory. My advise to you is that if you truly want to learn about your (self-diagnosed as per your first post last spring) headache, maybe you should stay and learn a little.
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #8 - Dec 3rd, 2008 at 8:30pm
 
brilmont wrote on Sep 10th, 2008 at 4:46am:
Try a low histamine diet for at least 3-6 weeks while you're in a cycle. †NO CHEESE, TOMATOES, CHOCOLATE, RED WINE, SPINACH, STRAWBERRIES, ETC. †Try an Anti-histamine (ie. Zyrtec, Claritin, Benadryl) to help block the histamine while dieting.

Easier to take Benadryl to see if it lessens the CH activities or eat the above foods (except alcohol) to see if they trigger CH, than an elimination diet for weeks to see if it helps---many episodics end the cycle anyway while missing out on precious nutrients fruits and veggies can offer.

I grazed tomatoes all day off my plants, loads and loads of tomatoes everyday in high cycle to the point of worrying myself about potassium overload. Apparently I don't have any histamine intolerance as tons of tomatoes didn't trigger one CH, as long as my eyes are well protected from the sun and I didn't sweat much in the backyard. †And I'm fish eater......histamine-rich blue fish on the list Pixie pasted, plus lots of "fermented" stuff on a daily basis. †I guess I'm lucky enough to have no food allergy or intolerance (just lactose and fructose).
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #9 - Dec 3rd, 2008 at 9:42pm
 
I eat whatever I want. Doesn't do anything but nourish me. No food is a trigger for me. but that's me.
all the best
the bb
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #10 - Dec 4th, 2008 at 1:41am
 
Quote:
I eat whatever I want. Doesn't do anything but nourish me. No food is a trigger for me. but that's me.
all the best
the bb


Pretty much the same here.

I spent a long time trying to isolate various things that started a cycle, and never found anything.  They just came along every May/June and October/November.

The only things (for me) that trigger an individual attack during a cycle are REM sleep and alcohol.

'Course, I get nailed during a cycle anyway...   Undecided

Best,

George



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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #11 - Dec 4th, 2008 at 3:35pm
 
Quote:
I eat whatever I want. Doesn't do anything but nourish me. No food is a trigger for me. but that's me. all the best
the bb


Ditto.
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #12 - Apr 15th, 2016 at 6:46pm
 
A low histamine diet worked for me too! I just passed through my third cluster without a headache. Few people outside our ďcommunityĒ know what a huge deal that last sentence is. It sounds like others have tried it without success but I would encourage people to give it a try. Itís been amazing for me. Iíve had regular spring/fall clusters for the past 14 years (with occasional smaller clusters in between). About 1 Ĺ years ago a naturopath suggested that I try a low histamine diet. I went on it about a month before I usually enter my spring cluster and stayed on it for the duration. Not one headache. I could definitely sense that things were going on and I had a few shadows but it never tipped over the edge. After that I went back to a normal diet until the fall. Then I did the same thing with the same results. This spring I didnít start the diet until I felt that I was about to enter a cluster and that worked OK. I was a little less strict this spring and did have to bust out the O2 once but I probably would have been OK without it.

My level of understanding of the physiology of it isnít that great but this is my general understanding. Our body makes histamines in response to allergens (and for other reasons). Foods contain them as well. If we avoid foods that contain lots of it we can lower our overall histamine levels. Then, when weíre in a cluster and our hypothalamus misfires and causes histamines to kick out and dilate our blood vessels and cause us horrendous pain, thereís simply not enough histamines to do the normal damage. Iím sure those of you more knowledgeable will tear that up.

The overall histamine level is also why the traditional food-journal never helped me. Thereís not one trigger. The orange you ate before you got a headache wasnít necessarily the cause. The ham and Swiss you ate earlier was just as guilty. The food list is pretty long, and there are lots of variations of it out there. Itís a really annoying diet but totally worth it.

Interestingly, I went to see the naturopath only after I had inadvertently put myself on a high-histamine diet. Typically my spring/fall clusters last 1-2 months but I was in one that had been going on for 4+ months and was worse than any Iíd ever had. With my tools (O2, verapamil and imitrex) no longer being enough and me having a hard time getting an appointment with my neurologist I went to see a naturopath who I knew (who wasnít familiar with cluster headaches but did some research and came up with an amazing shot in the dark). My inadvertent high-histamine diet was an anti-inflamatory, low-pH diet that I was trying. It turns out that my daily apple-cider vinegar tonics and pineapple/spinach smoothies were just about the worst things I could have done.
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #13 - Jun 22nd, 2016 at 4:12pm
 
I think some need to look at triggers in a more broad perspective. It seems that if the offending agent did not start an attack within a few minutes, many dismiss it. Keep a journal, if not on paper, at least make a mental note of what and when you eat.

So many say it's only alcohol, or one thing they eat, and discredit those things as not the same as food triggers, but anomalies. They are consumed and absorbed into your body, so they are food. Even if its a pill, it still is adding substance to your body that may consist of concentrations derived from, or at least found in food.

What you eat and how much will determine how quickly your body absorbs.
On an empty stomach. try eating a few helpings of a good probiotic sauerkraut, then let it digest. Give it some time to absorb. See what happens. For me, that will spawn a series of attacks for about 5 hours that I can't get rid of. If I were to just eat whatever, whenever, and never look at the big picture, I may never figure this out.
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #14 - Jun 24th, 2016 at 9:43am
 
Pixie-elf wrote on Sep 10th, 2008 at 11:58pm:
AlienSpaceGuy wrote on Sep 10th, 2008 at 11:38pm:
Quote:
Lots of doctors including neurologists and endocronologists and they can't find anything. †Most don't even try, .....
Of course they don't find anything. To do so, they would have to cut deep into your brain, to find your hypothalamus differs from the average. The cause of your CH is a defect in your hypothalamus, not a histamine overload.

However, histamine, being one of the many neurotransmitters, can in abundance trigger a cluster attack.

Your list "NO CHEESE, TOMATOES, CHOCOLATE, RED WINE, SPINACH, STRAWBERRIES, ETC." reminds me strongly of the infamous meegraine trigger list. I've never been triggered by any of these (well, I can't vouch for spinach, I don't eat that weed).

For me a combination of good ripe Swiss cheese and alcohol is a sure fire trigger. With the presence of alcohol the uptake of histamines is speeded up a hundred fold. The resulting histamine peak is for me high enough to trigger an attack of 2 - 3 hours.


† † † † † † † † †Smiley




That is part of the migraine and histamine intolerance list, however, it's not the full one for histamine intolerance. It's just foods high in histamine.

These things are to be avoided. I haven't seen people mentioning a lot of these things as triggers for their Cluster Headaches though...

Histamine Rich Foods(Copypasta'd from a PDF):
Fish: Mackeral, Herring, Sardine, Tuna.
Cheese:Gouda, Carnernbert, Cheddar, Ernmental, Swiss, Parmesan
Meat: Fermented Sausage, Salami, Fermented Ham
Vegetables: Sauerkraut, Spinach, Eggplant, Tomato Ketchup
Wine:
White Wine
Red Wine
Top-Fermented Beer
Bottom-Fermented Beer
Champagne
Red Wine Vinegar
Citrus fruit, Papaya, Strawberries, Pineapple, Nuts, Peanuts, Tomatoes, Chocolate, Fish, Crustaceans, Pork, Egg White, Additives, Licorice, Spices.

Up til I wound up on the ketotifen, every time I ate an orange, my nose would swell up and I'd get congested. It was horrible. Now? I can eat as many oranges as I like.

I haven't found -any- of these foods to trigger my CH yet... †My CH tends to trigger my histamine intolerance though, because if I'm stressed, my body produces more histamine, which breaks me out in hives. And the pain of a cluster headache can do that. However, I don't think I'll try any of these in combination if I can avoid it...



Maybe alcohol, but no other food triggers for me - Thank goodness.
If I had to give up all that, the cure would be worse than the disease. Wink
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Bob P
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #15 - Jun 25th, 2016 at 8:07am
 
Cluster headache is also known as histamine headache.
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #16 - Jun 26th, 2016 at 12:09am
 
Bob,

Good point... Unfortunately modern neurology classifies CH as a trigeminal autonomic cephalalgia (TAC) and apparently shies away from the earlier instantiations, "histaminic cephalalgia," or Horton's histamine cephalalgia possibly due to a medieval connotation.†

It's interesting to note that some refer to a histamine headache as a symptom rather than a disorder in itself.† To my way of thinking, this is a more appropriate definition.†

Taking it one step further, based on five years of collecting data from over 600 CHers taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and >80% of them achieving a significant reduction in the frequency, intensity and duration of their CH, I'm inclined to think cluster headache is a genetotrophic disorder.† This is a disorder which results from genetically determined nutritional metabolic needs not being met by the individual and which result in poor gene expression.† †

A histamine triggered CH arising from an allergic reaction is more than likely a spoiler...† as are other comorbid conditions such as infections, trauma and surgery which also result in inflammation and an immune system response...† My 2 Cents...

Take care,

V/R, Batch
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #17 - Jun 26th, 2016 at 3:04am
 
Hiya Batch...it has been so long that I have thought critically...that I fear I have lost the ability.
Just an old retired guy who delivers food and cheer to old folks.........

...and...I have not one single point of disagreement here...I am just puzzled...

CH doesn't seem to be genetically passed along...at least not as nearly consistently/reportedly as meeegraine...so a genetic nutritional anomaly seems unlikely...yes/no? Or perhaps...mayhaps...whether genetically predisposed or not...nutritional intake differences may be more important than genetics itself?!...I think that's what you are saying...but not sure.....

Re the allergy:ch connection.....I have ALWAYS believed there is some kind of connection...and I have NO idea what role histamine plays. I do note that 2 1/2 yrs of chemo destroyed by immune system and I am allergic to more environmental and food items than I can list. So happy to be alive ....yet miserable all too frequently. The Docs poo-poo any connection...but like most clusterheads... I know my body...and A>B.

Still....until the chemo.... I was actively chronically a busthead clusterhead...NOW...with multiple allergies...treated semi-successfully with Zyrtec and that wonderful benadryl (D3 too, just in case)l...I still shadow every day...but rarely get hit.....

It IS a puzzlement...and seems exactly inverse to likelihood: i.e. multiple and severe allergic reactions WITHOUT concomitant severe CH activity....

Just commenting here...a confused reader who always appreciates what you do for the family...and...to paraphrase Brian..."just a 34 yr clusterhead... and still no damn good at it"


Best

Jon
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #18 - Jun 26th, 2016 at 8:04am
 
Of course, CH has also been called serotonin headache.  Take your pick.
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #19 - Jun 26th, 2016 at 7:56pm
 
jon019 wrote on Jun 26th, 2016 at 3:04am:
CH doesn't seem to be genetically passed along...at least not as nearly consistently/reportedly as meeegraine...so a genetic nutritional anomaly seems unlikely...yes/no? Or perhaps...mayhaps...whether genetically predisposed or not...nutritional intake differences may be more important than genetics itself?!...I think that's what you are saying...but not sure.....


For some people there is a genetic link with CH (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register), however this only accounts for a few percent of people.

Equally there is a chance that there is an environment link too but given the low incidence of CH in the general population, this is not going to be a significant link otherwise you might expect a lot more people to get CH than do so.

There is research (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register) on genetic links for food allergies.
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Re: HISTAMINE OVERLOAD! †I found the cause for my CH
Reply #20 - Jun 29th, 2016 at 3:03pm
 
Hey Jon,

I understand puzzled...  I've spent the last 20 years researching the various facets of CH and the interventions commonly prescribed.  I found out a long time ago, it's best to track down the actual clinical trial associated with the  findings of interest. 

Until 2010, I could find no rhyme or reason for CH and its cyclic nature save for a possible link to the brain's body clock...

All that changed in October of 2010 when I stumbled onto vitamin D3 as a CH preventative...  I still don't have all the answers but what I do have is a far more relevant physiological framework upon which I can examine the leading theories.

Sooo... after all that... shadows are still a cluster headache...  Try a short loading schedule of 50,000 IU/day of vitamin D3 for five days and up your maintenance dose by 5,000 IU/day.

Take care and please keep us posted.
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