Fixing Sleep Challenges in Mast Cell Activation Syndrome and Histamine Intolerance
About 80% of my clients with Mast Cell Activation Syndrome or Histamine Intolerance have some sleep challenges. Sleep issues in Mast Cell Activation Syndrome and Histamine Intolerance can include:
- taking more than 15 minutes fall asleep
- feeling unrefreshed when waking
- waking up a couple times in the night
- having trouble falling back asleep after waking
Sleep issues in Mast Cell Activation Syndrome and Histamine Intolerance are often mild to moderate. But they can be like my sleep issues were – very severe. I have both Mast Cell Activation Syndrome and Histamine Intolerance. And I had severe insomnia for several years.
What did this look like? I couldn’t sleep no matter what I did. Every doctor I saw told me that no one could go as long as I had without sleep. Counselors told me I just didn’t want to go to sleep. That I was avoiding something. But I had a really good life. I wasn’t that stressed. I started to wonder if I was crazy.
I tried everything for sleep hygiene – things like going to bed at the same time every night. I avoided caffeine. I didn’t eat after 6pm. I got sunlight first thing in the morning. I avoided electronics at night. I did everything I was supposed to do. I took melatonin, 5htp, and all kinds of sleep formulas.
Still…nothing. No sleep.
Benadryl Addiction with Mast Cell Activation Syndrome and Histamine Intolerance
Then a doctor told me to take Benadryl – that it was the safest sleep medication available. That it wasn’t addictive. So, I tried it. I at least got groggy. I still couldn’t sleep. But I could lie still long enough to rest.
I quickly became addicted to the Benadryl. I kept taking it every night for 4 years. I wasn’t really sleeping. But getting some rest was better than nothing. Eventually my adrenals tanked. I was so exhausted I became mostly bed ridden.
Then the studies came out linking Benadryl to dementia. I was very concerned.
I tried stopping Benadryl. But I couldn’t. I had become addicted.
It took me 9 months to wean off Benadryl. I had to start by snipping the end a dye free gel-cap off with scissors. Then I would put a toothpick in the gel cap and remove just the tiny bit that stuck to the toothpick. I’d take 1 gel cap minus 1 toothpick worth of Benadryl. Then a week later, I would remove 2 toothpicks worth. It took a really long time.
Why was my sleep so bad?
It was due to a number of factors:
- Airway obstructions (my tongue was blocking my throat)
- High glutamate
- High histamine
- High oxalates
- Brain mast cell reactions
- Gut issues
These are all, in fact, common root causes in Mast Cell Activation Syndrome. If you are struggling with Mast Cell Activation Syndrome or Histamine Intolerance, you want to deal with these root causes so you can actually get well.
Fixing my sleep was a long journey. I had to fix all the factors above.
I talked about this with Dr. Meg Haworth on her podcast Get Well Soon.
Below are the show notes from that podcast called “How to Get Better Sleep.” You can listen to the podcast here:
How can Mast Cell Activation Syndrome and Histamine Intolerance affect sleep?
There are a large number of mast cells in the brain. In those of us with Mast Cell Activation Syndrome, the mast cells become over-reactive. These mast cells release inflammatory chemicals, like histamine.
Histamine also acts as an excitatory neurotransmitter in the brain. The body naturally releases the most histamine around 3 am. And if your histamine stores are already too high, this 3 am histamine release can wake you up in the middle of the night. This is why those with Histamine Intolerance can have sleep issues too.
Histamine can even affect serotonin, GABA, and melatonin levels. These are all needed to help you fall asleep. If serotonin, GABA, and melatonin get too low, your sleep can suffer.
Learning I had Mast Cell Activation Syndrome helped me understand why I had so much trouble sleeping. If you have insomnia and Mast Cell Activation Syndrome or Histamine Intolerance, it is probably a big part of your sleep issues too. But don’t worry, there is a lot you can do to fix sleep when you have Mast Cell Activation Syndrome or Histamine Intolerance.
Many people with Mast Cell Activation Syndrome and Histamine Intolerance have sleep issues. We’ve already talked about how histamine release can make it hard to sleep. Mast Cell Activation Syndrome often also causes joint pain, bone pain, and muscle pain. All of which can contribute to insomnia as well because pain makes it harder to sleep.
Mast Cell Activation Syndrome and Histamine Intolerance also can contribute to Hypothalamus-Pituitary-Adrenal (HPA) Axis Dysfunction, more commonly called Adrenal Fatigue. When you have HPA Axis Dysfunction/Adrenal Fatigue, sleep cycles get out of whack. This can make you feel tired during the day and wide awake at night.
If you are having trouble sleeping, you aren’t alone. Dr. Afrin, a lead Mast Cell Activation Syndrome researcher, says likely around 14%-17% of the general population has Mast Cell Activation Syndrome. And a majority of people with Mast Cell Activation Syndrome and Histamine Intolerance have insomnia.
It is very normal to have sleep issues when you have Mast Cell Activation Syndrome and Histamine Intolerance issues. Hang in there, because I’m going to get to some very specific steps you can do to help you fix your sleep.
But first…let’s look at the root factors affecting sleep when you have Mast Cell Activation Syndrome or Histamine Intolerance
The 7 Common Root factors that underlie Mast Cell Activation Syndrome and Histamine Intolerance that also affect sleep
Here are the 7 Most Common Root Triggers in Mast Cell Activation Syndrome and Sleep issues:
- Food Triggers (beyond just histamine)
I always start with the food triggers with my clients. Especially high histamine foods that people often eat because they have been told these foods are healthy. Foods like kombucha, spinach, and bone broth.
If you have Mast Cell Activation Syndrome or Histamine intolerance, these foods can make your sleep worse:
- Fermented foods: Kombucha, yogurt, kefir, Bragg’s Liquid Aminos, and coconut aminos are all higher histamine
- Bone broth
- Spinach, strawberries, walnuts, cashews, peanuts, avocados, and eggplant
- Ground meats
- Leftovers left in the fridge
Other food triggers for people include Lectins and Glutamates. Glutamates are big ones. Glutamates are in foods like bone broths, mushrooms, collagen.
Before I knew that I had Mast Cell Activation Syndrome and Histamine Intolerance, I was following basically a GAPS diet (Gut and Psychology Sundrome). I was making a lot of bone broths, making my own kombucha and kefir, making my own fermented veggies. I was eating these every day.
I didn’t understand it at the time, but my sleep was getting worse and worse. Once I figured out what my food triggers were, my sleep got so much better.
- Infections and Toxicity
Systemic infections like
- Lyme coinfections
- Mold toxicity
these can all attack the blood brain barrier. This will make sleep worse.
Also, gut infections really affect sleep because 90% of serotonin is made in the gut, and serotonin is made into melatonin to regulate sleep/wake cycles. Histamine levels also regulate sleep/wake cycles, so when melatonin is too low and histamine is too high, sleep gets all out of whack.
Another one is heavy metals.
I have a client I’ll call Jane who didn’t realize she had candida overgrowth and bad gut bacteria. No matter how healthy she ate, her gut bothered her from these infections, and her sleep continued to get worse.
Another client I’ll call “Paula” had Mast Cell Activation Syndrome, but didn’t know why. She finally learned she had Lyme and long-term mold exposure from a damp basement that were making Mast Cell Activation Syndrome worse and affecting sleep.
Both of these clients were working so hard on their health, but not getting much better. They were feeling frustrated and hopeless when we met. When we identified and addressed these root causes of their mast cell activation syndrome and sleep issues, they started to get much, much better. Their bodies were able to heal.
- Genetic Factors (like detox and inflammation issues)
Anything that contributes to inflammation issues and detox issues can affect sleep. When I do genetic analysis, I look at over 10,000 genetic variants. There is a great kit out now called Your Genomic Resource that beats out anything else on the market for these kinds of health issues. You get it through a practitioner, like me. You can order it through our office if you become a client.
We have the technology and knowledge now to do really comprehensive genetic analysis, thanks to Dr. Bob Miller who designed that kit. We’re up to analyzing over 10,000 genetic variants involved in Mast Cell Activation Syndrome and Histamine Intolerance.
The major genetic issues I see affecting sleep are the ones involved in:
- Histamine breakdown (there are 3 major pathways for this)
This sounds simple, but it is really about looking at how all the areas interplay.
Genetic analysis was the huge missing piece in my own health recovery. No one could figure out why things like L-glutamine and Curcumin were making me worse.
Now I understand it, though. L-glutamine is used for gut healing and curcumin as an anti-inflammatory. But for me, they were causing me a lot of problems due to my genetics.
Many practitioners thought I was crazy when I told them L-glutamine and curcumin made me really anxious and made it where I couldn’t sleep. The ones who believed me said I was more complex than they knew how to deal with.
This is how I got into this field. I had to figure it out for myself to be able to survive. And then I went on to become a Functional Naturopath and a Functional Genomic Analyst.
- Nutritional Deficiencies
Nutritional deficiencies are really common in the clients I see and can really affect sleep.
Nutrient deficiencies can be caused by eating processed foods or having a limited diet. If you have food sensitivities, it’s easy to become nutrition deficient due to having fewer food choices. Gut issues, like poor digestion, constipation, diarrhea, and malabsorption, can also affect nutrient levels. This is because when the gut isn’t working well, nutrients won’t be absorbed properly. This can lead to nutrient deficient states.
Also, our soils are depleted and it is harder now for even very healthy people to get all their nutrients through food alone.
There are a lot of nutrients that are critical for healthy sleep. These include:
- Fatty Acids like Omega 3s
- Right amino acid ratios
These are just a few. That is why I check Micronutrient status for my clients with sleep issues.
- Hypoxia (low oxygen)
The most common reason for low oxygen is caused by airway blocks. These obstructions keep you from breathing fully, such as with sleep apnea.
Airway problems can occur from carrying extra weight around the neck. The airway can also be restricted when the teeth are too close together, crowding the tongue. This causes the tongue to fall back toward the throat, partially blocking the airway. This can happen even in skinny people.
This is an area that not a lot of practitioners check. But is really critical for sleep. If your airway is obstructed and you don’t get enough oxygen, you can take all the supplements in the world and you still won’t sleep.
I didn’t take my airway obstructions seriously for years because I’m normal weight. I thought sleep apnea issues only happened to people who are overweight.
I technically don’t have apnea, but I still have airway obstructions. Addressing my airway with sleep appliances and targeted orthodontics did wonders for my sleep!
I now do a pre-screening for all my clients with sleep issues to see if we need to check this out. It is amazing how much getting this fixed can make a difference in sleep.
- Hormone Imbalances
Hormones affect the mast cells in many different ways. Women tend to have more
mast cell issues than men because women have more estrogen. Estrogen causes the
mast cells to release histamine. The rising histamine levels cause more estrogen, creating a snowball effect.
This is also why you may have experienced more mast cell issues and sleep issues at certain times in your cycle – likely when your estrogen levels were higher than your progesterone. Progesterone is calming and helps with sleep.
Another hormone that is very important in Mast Cell Activation Syndrome is cortisol. Cortisol is made by the adrenals and helps the body manage stress. It regulates the immune system, including the mast cells.
Cortisol also gives you energy to get going in the morning. And regulates sleep/wake cycles. Cortisol is made in the adrenal glands and can get out of balance due to stress or being sick for a long time. When cortisol gets out of whack, it is often called “Adrenal Fatigue.”
I have a client “Cindy” who was having very difficult periods and no energy in the
mornings. Her sleep never felt refreshing. But she noticed it got much worse right before her period started. Labs showed her cortisol and progesterone were low and she was estrogen dominant. By supporting healthy hormone balance, Barbara started having more energy and her sleep got much better.
- Stress and/or Early Trauma
It is really important to think about stress regarding Mast Cell Activation Syndrome, Histamine Intolerance, and sleep. Any chronic stress or traumatic experience puts the body in a fight or flight reaction. This triggers the mast cells to activate and can affect the cortisol rhythm we talked about before. Long term stress and trauma negatively affects gene expression too.
I also do stress assessments with clients to see how much this might be affecting sleep. It isn’t a matter of it being all in your head. It is about whether you are stuck in the fight or flight response and how to shift out of it. I really like Coherent Breathing for this. I have a post that tells you exactly how to do this:
I used to be stuck in fight or flight – I felt like I couldn’t calm down at night. It wasn’t that I was ruminating on things or worried about anything. I had a really nice life. But I always felt revved up. I started doing the Coherent Breathing 2x a day and within about 3 months, my nervous system switched over from fight or flight to the parasympathetic mode – the rest, heal, restore mode. It takes commitment because you have to do it daily and stick with it. But it really does work.
And if you have chronic stress, it is really critical to work with someone who can help you address this.
What issues have you had with sleep and how did you fix your sleep?
My sleep issues started when I was 9 years old. I probably already had mast cell activation syndrome. I would get hives easily and had bad allergies. But then I got kicked in the head by a horse and had a traumatic brain injury. I grew up in the country, and back then they really didn’t know much about concussions. So, there wasn’t any treatment for it. But my sleep got worse then and I started getting anxiety.
Then it got a little more worse when I entered puberty and my hormones changed. Stress in college made it worse. In my 20s, I tried fixing my diet by eating healthier. I started eating all these high histamine and high glutamate foods: spinach, bone broth, kefir, kombucha…Then my sleep got really horrible. I got to where I could only drift, but never drop into deep sleep.
I was told by a doctor to take Benadryl because “it is one of the safest drugs.” Well, we didn’t know then that Benadryl causes dementia. I took Benadryl every night for sleep for over 4 years. I’m really concerned about this now – about my brain because the dementia symptoms from Benadryl may not show up for 20 years.
The Benadryl didn’t really fix my sleep, either. It just made me groggy enough that I could lie still for a few hours. I was severely and chronically sleep deprived for close to 10 years. When the dementia study on Benadryl came out, I knew I had to get off it.
When I tried to stop, I couldn’t sleep. I was addicted! So, I had to wean off so slowly. I started with cutting open of the gel caps and putting a toothpick in and removing just that amount. Then a week later I would take two toothpick amounts out. It took 9 months to get off of it. But then, I still couldn’t sleep well.
I was a really, really bad case. Practitioners who didn’t understand what I was going through told me that no one could go more than a few days without sleep – well, we know that is wrong. I was told I didn’t want to sleep. That it was psychological. That I was attention seeking.
I was told this so often that for a period of time I decided maybe I was crazy. So, I tried just doing therapy. But then I kept getting worse and worse. And I was trying so hard. So, finally I decided I wasn’t actually crazy. It was just that those practitioners didn’t have the skills and knowledge to deal with this level of sleep issues.
I slowly figured out I had all of the root causes I talked about, so I stepped through them one by one. Each one that I addressed, my sleep got better and better.
- First, I lowered my histamine and glutamate levels through diet and changing the supplements I was taking.
- Then, I dealt with my air way obstruction. I got sleep appliances first. I finally bit the bullet and got braces to open my dental arch and make more room for my tongue.
- Then I started balancing hormones – my cortisol, estrogen, and progesterone were all off.
- I had heavy metals, so I worked on those.
- I had been dealing with stress, early childhood traumas, and my stuck nervous system all along, so I did a lot of therapy, somatic trauma release, and Coherent Breathing. These helped, but they didn’t fix my sleep on their own. I also had to fix the airway issue and the biochemical issues.
- I got my nutrient deficiencies balanced. I had things show up on my micronutrient testing I never would have guessed I needed to take, so this made a huge difference.
- Now I’m dealing with my gut. I’ve had Lyme and I have mold toxicity. I also have had bad candida, even though I don’t eat sugar or many carbs. This is probably because of the mold. These all really affect the brain. I’ve had to go slow so I don’t make the mast cell activation worse, but clearing up the mold toxicity really helped.
Now, I have deep, refreshing sleep 95% of the time. Coming from never having deep sleep for years, it really feels amazing to get to sleep like this. When I don’t sleep well, it is usually because I forgot to take my sleep support supplements. Or went to see a movie too late at night and got overstimulated or because I had something high histamine or high glutamate. When I stick to my protocol and my routine, I sleep really well.
It took a lot of work to fix my sleep, but it was completely worth it.
Another big thing for me is wearing blue light blocking glasses at night. I put them on around 8p and wear them until bed time. This has made a big difference. There are a lot of fancy ones out there. But I just wear these Uvex orange safety glasses I bought on Amazon. I like them because they wrap around the sides, tops, and bottoms of my eyes and really block the light all around.
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Reducing EMFs has been another big piece. Staying away from electronics at night and keeping electronics away from my bed, turning the wifi router off at night – these have really helped too.
If someone has already tried improving their sleep hygiene, what are the next steps in supporting sleep for people with Mast Cell Activation Syndrome or Histamine Intolerance?
It is definitely important to start with the basics:
- Not eating too late
- Stop eating gluten and inflammatory foods
- Reduce histamine foods and high glutamate foods
- No caffeine after 10am or better no caffeine at all
- No exciting movies at night
- Blue light blocking glasses
- Relaxation before bed
- Only use the bed for sleep
These are the easy first steps. You have probably already done all those things and are still doing them. But if you aren’t, definitely go back to the basics and make sure you have all of those things on board.
If you haven’t tried some of the basic supplements for sleep, I have a blog post on top supplements for insomnia relief in my blog:
After that, it is important to start stepping through the root causes. This is because if you don’t address your root causes, you won’t actually fix your sleep.
I’ve listened to hundreds and hundreds of stories of people with Mast Cell Activation Syndrome and sleep issues and almost all of them suffered for too long trying to figure this out alone or working with practitioners who didn’t understand how to help them.
It really breaks my heart when people have worked so hard and spent so much money and are still suffering. But working with a Functional Practitioner who really gets sleep issues and knows how to work with these root causes will save you a ton of money in the long run. Plus, it will get you better much, much faster.
And if you have Mast Cell Activation Syndrome or Histamine Intolerance, you want to make sure that your Functional Practitioner has a lot of experience with these. Because they are really complex and are definitely a specialty on their own.
The unfortunate thing is if you have Mast Cell Activation Syndrome and you do nothing – this is likely going to be progressive for you and your sleep issues are likely going to continue to get worse.
You can go the traditional route of medications like antihistamines and sleep drugs, but these are just masking symptoms and Mast Cell Activation Syndrome will still be progressive if you just use pharmaceuticals. Now some people do need medications. I’m not anti-medication. But what I’m saying is that if you want to get better, medications alone won’t do it.
The medications for Mast Cell Activation Syndrome have a lot of side effects. Some of them like Benadryl cause dementia. And people need more and more medications over time. I’ve seen this in hundreds of cases where this snowballed into a nightmare for people.
But managing sleep issues like the ones we see in Mast Cell Activation Syndrome takes work and requires changes and taking supplements. So. medication use is really the route if you don’t want to do a lot of work and take supplements.
These conventional routes don’t look at the root causes. But using a Functional Practitioner who really gets and understands how to work with these kinds of sleep issues and getting Functional Labs like the right Hormone Testing, good Gut Testing, Your Genomic Resource genetic testing, and other functional labs is where the real turnaround occurs for people.
There is a great lab called a Neural Zoomer I recommend when sleep issues aren’t responding to the normal protocols. It looks for underlying factors in blood brain barrier disruption. The right labs make all the difference
When we dig in and do the work to identify the root causes, then address those root causes, support the cofactors, address diet changes – then you can actually heal and improve. Your sleep comes back. You get your life back. This is the method I use and the method others use who are getting good results with sleep issues in Mast Cell Activation Syndrome, Histamine Intolerance, and related conditions causing sleep problems.
So, have you’ve tried the basics?
Have you already taken supplements like melatonin, magnesium threonate, or CBD oil?
If so, then the next step is to team up with a Functional Practitioner and really step through these root causes and get to work on getting your sleep back.