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Low Histamine diet worked for me!

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I just passed through my third cluster without a headache by going on a low histamine diet during my regular cycle! Absolutely amazing. 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 my normal fall cluster. 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 how I think about it. 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.

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Thank you!  This seems completely sensible to me, particularly because of the role of histamines in CH and because of what has been learned lately about the positive effects of adding a commercial anti-histamine (benadryl) to the vitamin D3 regimen.

 

Was there a particular resource (or resources) you turned to as you adhered to this diet?  A website, a book . . .?

 

Again -- thanks very much for taking the time to share this.

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Glad to do it. I'm sure this won't work for everyone but hopefully it might help some of you out. It's been such a great thing for me (and my family), even if it is an annoying diet for me to deal with 4 or 5 months out of the year. 

 

Here are some of the sites I've used. The frustrating thing is that it's a new area and there isn't a definitive list of foods out there so you have to piece things together and experiment. For example, eggs are OK on some lists and not on others. I kept them in my diet and it seemed to work for me.

- http://www.mindbodygreen.com/0-11175/everything-you-need-to-know-about-histamine-intolerance.html

http://chriskresser.com/headaches-hives-and-heartburn-could-histamine-be-the-cause/

http://thelowhistaminechef.com/(a reporter who has done a ton of research, a lot of it focused on MAST cell issues that are a little different)

http://www.histaminintoleranz.ch/en/introduction.html(a good food list in their downloads section)

There's a book called "Is Food Making You Sick" by James GIbb that I just came across. I haven't read it though.

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Batch added Benadryl to the D3 regimen.  It was temporary at one time (during high pollen seasons), but I have the sense that maybe he's now suggesting taking it every day (except for the side effects)  You can check your local pollen levels at weather.com, under the "More Forecasts" tab.  I could be wrong about the taking it every day thing, but maybe you might try it and see what happens.

 

Here's what he wrote to me in an email not long ago:

 

>>>>>25 to 50 mg/day (25 mg every 12 hours) of Benadryl (Diphenhydramine) is sufficient for most CHers.  The max daily adult dose for allergic rhinitis is 150 mg/day so nothing wrong with 25 mg 3X/day.  Just avoid driving as that much benadryl will make anyone very drowsy.

 

I added the Benadryl (Diphenhydramine) in March of 2015 after I fell out of remission during an exceptionally heavy pollen fall that coated my black pickup turning it gray as if someone had dumped a bag of Portland Cement on it.  We returned from travel on 7 March 2015 and the pollen fall from the Alder trees was in full bloom.  It took less than six hours for allergic rhinitis to set in and 24 hours later, the CH beast started jumping ugly on me.

It took a few days at 50,000 IU/day plus the rest of the anti-inflammatory regimen for me to realize increasing the vitamin D3 intake wasn't a solution.  I was still getting hammered with no indication of a letup.  At that point the clue bird made a low pass and my good idea light came on bright and flashing... Treat the Allergy!!! 

Allergic reactions trigger a flood of histamine that in turn triggers the release of inflammatory and pain inducing cytokines like substance P and CGRP (Calcitonin Gene-Related Peptide) from the hypothalamus and trigeminal ganglia...  Do these locations sound familiar?  They should as they're the main players in CH pathogenesis. 

After a little research, I selected Benadryl (Diphenhydramine).  It is a first-generation antihistamine that passes through the blood brain barrier to block H1 histamine receptors on cells throughout the brain and in particular, the hypothalamus and trigeminal ganglia.  Second- and third-generation (non drowsy type) antihistamines cannot do this so will not be as effective in preventing the histamine reaction. With the reaction to histamine blocked, the anti-inflammatory regimen started working as advertised so I dropped back to my usual vitamin D3 maintenance dose at 10,000 IU/day.<<<

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To Swiftlaw's question, I think that the low-histamine regime could work mid-cluster. For my spring cluster I waited until I started getting shadows and other symptoms. It seemed like it took a few days for it to kick in but it seemed to work. I'd be curious to hear if other had success mid-cluster. And, yes, it is a pretty limited diet in a lot of ways. There's a big celebration in my house when I start easing out of it.

 

Great post from CHfather and repost of Batch on antihistamine. I tried to keep track of pollen counts this spring and it did seem like some of the tree pollens were really high at the same time that I started to feel like I might tip over the CH edge despite my low-histamine diet. I did take Benedryl a few of those days and seemed to help. I was hesitant to stay on it because I had read something (not verified) that antihistamines could interfere with the body's natural DAO enyzmes (which are responsible for breaking down histamines). That made me nervous but I also wanted to try to not change too many things at once as I experimented with the diet.

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This has got me interested. I'm have started the diet, only a few things this week. I just picked one of the food list from one of the links. I'll X out more foods as the weeks go by. Peace and may pain free days find you.

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It's been eight days, something is going on in a positive way. I've been on the diet fully for a week now. It's something hard to tell being chronic for nine years when I have results and what they are. I just take it for granted that I am going to get hit at 7 pm. There is still a very slight presents of ch behind my right eye. Also still taking D3, so where I would be at two or three level and higher, this week it's been .5 to 1.5 , wait and see.

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Another week has gone by with very positive results. I normally get hits in the evening around 7, and their at various levels and duration. But, the last week it's a micro hit, that's what I call it, still a ch hit, but in seconds and flashes through, it doesn't stay and build. I have had some intense micro hits, but the recover is very quick. I still have the feeling of the ch behind my right eye, it's hard to describe. The diet is not hard to be on. I'm still getting use to not being incapacitated in the evening.  wait and see

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Reporting back after a couple of weeks, l have to say something has changed for me in a positive way. The incapacitating pain is just not there anymore. There is still a ch presents in my right eye with some pain most evenings, but it's in the 1 to 2 range. I have had two tough evenings. One was storm related, the other was just over doing it, feeling good and doing to much, 5 to 7 range and with a short duration. Still on D3 and a little o2. I'm still waiting for Ch to find away around this low histamine diet. Wait and see

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I’ve been on the low histamine diet about 9 weeks, very disciplined the last 4 weeks, I learned that my body produces histamine when it’s under stress, and during a two week period CH ramped up big time, I almost stopped the diet, the stress from three weeks ago is over and this week is back to very low pain or a ch vise like pressure on the right temple, not painful just there, the ch present is what I call it. So it’s been better on the pain level and the number of CH occurrences, like D3 it helps my very stubborn case of CH, as my neuro likes to call it. I have learned that when you order a plain hamburger, they always ask no cheese, pickles, mustard or tomato, nope plain… naked. There is no tomatoes or good aged cheeses on this diet, ugh…

Here’s a pod cast I like, http://c7c.37f.myftpupload.com/dr-janice-joneja-histamine-intolerance-interview-transcript/.  Did you ever think when you got CH you would know this much about science and medical terms and names of drugs? So, I raise my plan hamburger in a toast to being a self advocate of one’s health in our CH journey. Cheers and peace

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Histamine Restricted Diet "the list"

Allowed/Restricted Foods

This diet excludes all:

  • foods with naturally high levels of histamine
  • fermented food
  • artificial food coloring, especially tartrazine
  • Benzoates including food sources of benzoates, benzoic acid and sodium benzoate
  • Butylated hydroxyanisole (BHA) and butylated hydoxytoluene (BHT)

 

Milk and Dairy

 

Foods Allowed

  • Plain milk
  • Ricotta cheese

 

Foods Restricted

  • All prepared dairy products made with restricted ingredients
  • All cheese
  • All yogurt
  • Buttermilk

 

Breads and Cereals

 

Foods Allowed

  • All plain grains
  • Plain oats and oatmeal
  • Plain cream of wheat
  • Puffed rice and wheat

 

Foods Restricted

  • Anise
  • Artificial colors
  • Artificial flavors
  • Bleached flour
  • Cheese
  • Chocolate
  • Cinnamon
  • Cloves
  • Cocoa
  • Margarine
  • Preservatives
  • Restricted fruits
  • Some jams, jellies
  • Any food made with or cooked in oils with hydrolyzed lecithin, BHA, BHT
  • Commercial pie, pastry, and fillings
  • Baking mixes
  • Dry dessert mixes

 

 

Vegetables

 

Foods Allowed

  • All pure fresh and frozen vegetables and juices except those listed

 

 

Foods Restricted

 

  • Pumpkin
  • Sauerkraut
  • Spinach
  • Tomato and all tomato products
  • All vegetables prepared with restricted ingredients

 

Fruits

 

Foods Allowed

  • Fruits Apple
  • Banana
  • Cantaloupe (rock melon)
  • Figs
  • Grapefruit
  • Grapes
  • Honeydew
  • Kiwi
  • Lemon
  • Lime
  • Mango
  • Pear
  • Rhubarb
  • Watermelon
  • Fruit dishes made with allowed ingredients

Foods Restricted

  • Apricot
  • Cherry
  • Cranberry
  • Currant
  • Date
  • Loganberry
  • Nectarine
  • Orange
  • Papaya (pawpaw)
  • Peach
  • Pineapple
  • Prunes
  • Plums
  • Raisins
  • Raspberries
  • Strawberries
  • Fruit dishes, jams, juices made with restricted ingredients

 

 

Meat, poultry and fish

 

Foods Allowed

  •  All pure, freshly cooked meat or poultry

 

Foods Restricted

  • All fish and shellfish
  • All processed meats
  • All leftover cooked meats

 

 

Eggs

 

Foods Allowed

  • All plain, cooked egg

 

Foods Restricted

  • All prepared with restricted ingredients
  • Raw egg white (as in some eggnog, hollandaise sauce, milkshake)

 

Legumes

 

Foods Allowed

  • All plain legumes except those listed
  • Pure peanut butter

 

Foods Restricted

  • Soy beans
  • Red beans

 

Nuts and seeds

 

Foods allowed

  • All plain nuts and seeds

Foods restricted

  • All with restricted ingredients

 

Fats and oils 

 

Foods allowed

  • Pure butter
  • Pure vegetable oil
  • Homemade salad dressings with allowed ingredients
  • Lard and meat drippings
  • Homemade gravies 

 

 

Foods restricted

  • All fats and oils with color and/or preservatives
  • Hydrolyzed lecithin
  • Margarine
  • Prepared salad dressings with restricted ingredients
  • Prepared gravies

 

Spices and Herbs

 

Foods allowed

  • All fresh, frozen or dried herbs and spices except those listed

 

Foods restricted

  • Anise
  • Cinnamon
  • Cloves
  • Curry powder
  • Hot paprika
  • Nutmeg
  • Seasoning packets with restricted ingredients
  • Foods labeled “with spicesâ€

 

Sweeteners  

 

Foods allowed

  • Sugar
  • Honey
  • Molasses
  • Maple syrup
  • Corn syrup
  • Icing sugar
  • Pure jams, jellies, marmalades, conserves made with allowed ingredients
  • Plain artificial sweeteners
  • Homemade sweets with allowed ingredients

 

Foods restricted

  • Flavored syrups
  • Prepared dessert fillings
  • Prepared icings, frostings
  • Spreads with restricted ingredients
  • Cake decorations
  • Confectionary
  • Commercial candies

 

Miscellaneous

 

Food allowed

  • Baking powder
  • Baking soda
  • Cream of tartar
  • Plain gelatin
  • Homemade relishes with allowed ingredients

 

Foods restricted

  • All chocolate and cocoa
  • Flavored gelatin
  • Mincemeat
  • Prepared relishes and olives
  • Soy sauce
  • Miso
  • Commercial ketchup
  • Gherkin pickles
  • Most commercial salad dressing

 

Beverages

 

Food allowed

  • Plain milk
  • Pure juices of allowed fruits and vegetables
  • Plain and carbonated mineral water
  • Coffee
  • Alcohol: plain vodka, gin, white rum

 

Foods restricted

  • Flavored milks
  • Fruit juices and cocktails made with restricted ingredients
  • All other carbonated drinks
  • All tea
  • All drinks with “flavor†or “spicesâ€
  • Beer
  • Wine
  • Cider
  • All other alcoholic beverages

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Reporting on low histamine diet:

The first three weeks of diet I worked on eliminating foods on list, 4th week, tried to stick mostly to low histamine diet, adding no left over food older than 48 hours (cook food have more histamine), still using coffee and tea (tea is on list), added Quercetin (works on allergies), 5th -7th week getting better on sticking to diet, using frozen vegetables, removed tea, feeling better after removing tea, very light shadow in the evening, 8th - 9th week my body is starting to change, must take awhile for histamine level to change or maybe the anti-inflammatory state of my body is getting better, mood is a lot better, very low pain levels (almost does not register, from where I’ve been), 10th – 12th week the same, light shadows, I felt the barometric pressure change but it did not trigger a CH. Daily I take the D3 regimen, quercetin 500 mg, lion’s mane/ mushroom pill 1 g.

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CH morphed it's way around my efforts, just passed through three days of intense CHs, I'm disappointed but it is what it is, staying on diet to see if CH goes back to mostly a shadow , next....

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Good call, pollen has been medium high starting early last week, during days of CH, pollen will be high the next few days, I used Benadryl generic brand on day two and three of ch last week, I didn't notice any help from Benadryl, going to try non generic brand next, also signed up for pollen email alerts.

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I got a new box of Benadryl, took 50 mg last two nights, pollen app shows high pollen count the rest of this week, I'm kind of impressed, this Benadryl seems to be lowering my histamine level, ch low to medium shadows, better than were I was a few days ago. wait and see

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