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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Quote:
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.


                 

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.




Dave

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

brilmont wrote on Sep 10^th, 2008 at 4:46am:

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).

Quote:


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...   

Best,

George

A low histamine diet worked for me too! I just passed through my third cluster without a headache. Few people outside our “community” 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. It’s been amazing for me. I’ve had regular spring/fall clusters for the past 14 years (with occasional smaller clusters in between). About 1 ½ 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 didn’t 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 isn’t 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 we’re in a cluster and our hypothalamus misfires and causes histamines to kick out and dilate our blood vessels and cause us horrendous pain, there’s simply not enough histamines to do the normal damage. I’m sure those of you more knowledgeable will tear that up.

The overall histamine level is also why the traditional food-journal never helped me. There’s not one trigger. The orange you ate before you got a headache wasn’t 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. It’s 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 I’d 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 wasn’t 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.

Pixie-elf wrote on Sep 10^th, 2008 at 11:58pm:



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.

Of course, CH has also been called serotonin headache.  Take your pick.

Histamine headache is one name for cluster headache (or have I misundestood things?)...

As I am sensive for acetaldehyde, I get into problems from it (  just google histamine and acetaldehyde). Unfortunately this cancer causing chemical is still used as food additive widely...

But ofcause other people are sensive for other things...so acetium (acetaldehyde bloccer) will not work for everyone..