Last night, I had a bad reaction. I woke up at 3:30, confused and feeling like something was wrong. I was starting to panic. I woke up Sam, and by that time, the itching had started—all over my body, intense, burning itching. I didn’t have hives, not many, but my skin felt like it was on fire, and I was getting really foggy. I had heartburn. Sam now knows that when I give him vague answers, he’s not to ask me if I need Benadryl, he just is to tell me to take it.
And if I—as I did—sit there going, “Yeah, I guess I should” but not doing anything, bring it to me and make me take it. I had to get to a place where I could turn on the light because the anxiety was worse in the dark. So I went in the living room and sat and he came in with me, brought me my inhaler (which I also needed), brought in my Epi-pen (generics) just in case, and waited until my mind began to clear enough to realize that yeah, I was in the middle of a bad reaction. Finally, the Benadryl calmed the itching enough for me to go back to bed. This morning, I woke late, foggy headed, and exhausted.
What happened? Histamine intolerance. Over the past year, it’s gotten worse and now, I count myself lucky when I can go a week without a reaction.
A number of you have seen me mention on Instagram, Twitter, Facebook, and here on the blog that I have histamine intolerance. But though I’ve talked about food allergies a lot, I haven’t gone much into this. Perhaps because it’s a rabbit hole that I wish I had never fallen into. But I think it’s important to talk about because it’s not always easy to find information on, and a number of websites have conflicting information. That’s because A—histamine intolerance isn’t fully recognized in the US yet (like many conditions), B—it affects each person differently. Together, these two factors make for a lot of confusion.
First: What is histamine and histamine intolerance?
Histamine is stored in mast cells (a type of white blood cell) in your body. It’s a chemical that tries to help your body get rid of something that’s irritating it: allergens, etc. Mast cells play an important part in your body. According to wikipedia (and I verified this): “Although best known for their role in allergy and anaphylaxis, mast cells play an important protective role as well, being intimately involved in wound healing, angiogenesis, immune tolerance, defense against pathogens, and blood–brain barrier function.” So histamine is a good thing. Until your body can’t process it right. This is a complex issue and here’s a good in-depth discussion of how this works.
Histamine intolerance manifests in a number of ways and the symptoms are numerous and include:
- Itching (of skin, eyes, scalp)
- Rashes/Eczema
- Hives
- PMS
- Flushing
- Anxiety/Panic Attacks/Confusion/Fatigue
- Angioedema: Swelling of eyes, lips, throat
- Runny nose/watery eyes
- Wheezing/Asthma
- Heartburn
- Irregular heart beat
- Low blood pressure
- Muscle aches/inflammation
All this sound like allergies? That’s because histamine intolerance mimics an allergy attack. And like allergies, histamine intolerance can lead to anaphylaxis, a deadly condition. What’s the difference though?
- Allergies trigger an over-release of histamine based on one or more items you eat/come in contact with. (You’re IgE allergic to shrimp. You accidentally eat something with shrimp in it or that’s been contaminated with shrimp, boom—histamine dump that throws you into a reaction).
- Histamine intolerance builds up based on what you eat/come into contact with. So histamine intolerance is more of a balancing act—balancing the histamine in foods, with the histamines released during exercise, with the histamine released due to pollen, etc.. (You eat tomatoes and chocolate at lunch, you work out hard in the afternoon. Pollen count is high. Then you eat fish for dinner. You wake up in the middle of the night when histamine normally rises in the middle of a bad reaction).
Either way, if the reaction is bad enough, you can end up needing an Epi-pen.
One of the common ways to explain how this works is to use the ‘histamine bucket’ explanation. Take a look at the illustration. The “normal” histamine bucket can take a lot of histamine in it before there’s a problem. But when you have histamine intolerance, your ‘bucket’ holds a lot less. What would be a manageable amount of histamine for a person without HI, turns into a massive reactive mess for someone with HI.
So, in a nutshell, that’s what I’m dealing with, along with ‘regular’ food allergies. Once you head down the rabbit hole, it gets to be a maze of confusion. For one thing, a number of foods are either high in histamine, or they liberate histamine in the body and dump it in the blood stream. There are some definite ‘don’t eats’ but there’s a blurry area of foods that will trigger some HI people but not others. Or where you can eat it on a day when the Histamine Bucket’s fairly empty but if you have it on a day where the histamine levels are high, boom—a reaction. Exercise—especially cardio—dumps histamine into the body. Hormones also cause histamine releases. Some medications do. So do high-pollen count days. And stress…stress and lack of sleep? Hello, histamine.
So it’s a balancing act, and not easy to explain. I can’t just say “I can’t eat peanuts” or “oh, I’m allergic to dairy” anymore. Now, it’s “Well, I can’t have this/this/this and some days I can manage a little this but only if I don’t exercise and if I get enough sleep”…And frankly, my levels of sensitivity are sky high right now and I feel like I’m a walking histamine bomb.
Next time: What I can and can’t eat. How I manage my carb sensitivity with the need to watch histamine foods.
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Have you tried DAO supplements before meals? Just a thought.
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I’m so sorry to hear about this. I know it is not easy to live with at all. Benedryl hasn’t worked for me for years. I have a lot of health issues and the one that kicks my butt besides my back and RA is allergies. I live in Oklahoma and am literally allergic to everything here. Grass, weeds, tress, etc. My kids have the same allergies and if it hadn’t been for them I wouldn’t have found a way for all three of us to avoid being sick all the time and needing allergy shots every week. I kept forgetting o give them their Zyrtec before school so I switched to nights when I gave them their vitamins. Imagine my surprise when allergy season hit hard and they were doing tons better than I was. I realized that zyrtec was a 24 hour allergy med so logically if you took it at night after a shower then it would be at its strongest when you went out into the Oklahoma wind full of allergens. Then when you come in you take your shower washing it all away and start a repeat. This isn’t saying we still don’t suffer, but one little red Sudafed once or twice a day for a few days when our sinuses get inflamed along with a hot steam humidifier stops it all. Everyone I know that has tried it says it works for them too and they suffer a lot less. Oklahoma is one of the worst states to live for allergy sufferers. I don’t think this will help you, but it would be nice if it did, but maybe it would help some of your other readers. You’ll be in my thoughts and I hope this is something you can find a balance for and it doesn’t continue to impact your life so much. How you manage to work through it all astounds me and you have my respect because I know it’s hard especially if you have the hives and problems breathing. Hives I swear are like acid lit on fire. Thank you for bringing adventure and escape to my life with your wonderful books. Best wishes on this trial in your life. Tell Sam thank you and give him a hug from all of your readers for taking such good care of you.
So sorry to hear you are not doing well. I also have severe health challenges, and so know how difficult it can be. I must say I admire how you continue to write regardless of your health – indeed, you are a very prolific writer. I love your Otherworld series, and will be beginning your Fury series next, I think. I know how difficult it is for me to be active due to my health, so it is indeed admirable how you are able to continue your work while having these health challenges. Thank you from a dedicated fan. Best wishes and I hope your health soon improves. Blessed Be.
I have a condition called myasthenia gravis. Causes your antibodies to attack your good cells. The musk (worst) form (which I have) can cause your voluntary muscles to stop working. This can include your breathing, leg, arm, neck, muscles to be weak. Also swallowing, breathing and speech. Diagnosed 12/2007 and had an episode that put me in hospital 1/2008.After that got on prednisone and cellcept. Only problem had since then is droopy eyelids. I am one of the lucky ones cause I could be a lot sicker. I am in the very small number of people that do well with the musk. Thankful for that and pray for those who are not as fortunate. Charlotte Copeland 67 years young.
I’m so sorry. I know how bad it can get. I have it to as well as allergies. I itch all the time and live on benedryl. Hope you feel better soon.
I’m so very sorry you have to live with this. Your allergies are enough to deal with, now this. Thank you for helping bringing awareness and understanding to others.