It's Not in Your Head
I struggled with chronic hives for years. Was ADHD to blame?
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When I was in my late 20s, I quit smoking cigarettes.1 It was by far one of the hardest things I have ever done. It makes sense that it was difficult. Nicotine is a pretty effective stimulant, after all. Smoking gave my ADHD brain a boost of dopamine, and helped me focus. It was startling how easily I became addicted as a teen, and how much it helped me manage my workload.
When I quit smoking, my ADHD symptoms got worse, even though I didn’t know I had ADHD. I was unknowingly self-medicating my symptoms with nicotine, and I had completely cut myself off from it. Not long after that, I began to experience weird symptoms. At first, I was experiencing severe vertigo and nausea, to the point where I couldn’t get out of bed. I went to multiple doctors over the course of many years. I had my hormone levels tested, blood work, you name it. Since I had anxiety in my chart, I was treated like an overly paranoid person. All of the doctors told me either to lose weight, exercise more, or they wrote it off with a shrug. Not one of them suggested food allergies. The only thing that helped was cutting soy milk out of my diet, which frankly, I didn’t like anyway.
I don’t know if quitting smoking caused any of this, but I don’t think it helped. There is evidence that quitting smoking can change your gut biome, and maybe that had something to do with it. Or, the problem had always been there, and my ADHD symptoms just made it worse. Who knows.
My symptoms escalated. I started breaking out into hives, as well as a host of other symptoms: nausea, stomach cramps, bloating, diarrhea, hot flashes, canker sores, severe itching, joint pain, fatigue, and more. What’s worse is that my allergic reactions were often accompanied by crippling anxiety, and made me more susceptible to panic attacks and meltdowns. By 2019, I had done enough research entirely on my own to realize that I was likely allergic to something I was eating, and finally got in to see an allergist.
My allergist is probably the best doctor I have ever been to2. I avoid male doctors whenever possible (for reasons), but he’s a lovely exception to this rule. When I met him, he was warm, sympathetic, and didn’t immediately dismiss the research I had done on my own. He thoughtfully answered all my questions, and asked several of his own.
I was so relieved to be taken seriously that I broke down and cried in his office. We talked a lot about how the mind-body connection is undervalued, and his attitude was refreshing. When I told him I was going to give up wine for good because it triggered my hives, he was like, “I’m European, this makes me too sad. If it gives you pleasure, I want you to be able to have it. We should enjoy our life”.
A doctor - a MAN DOCTOR - who cared if I derived pleasure from my life???
It was clear to both of us by the end of our conversation that the allergic reactions were fueling my anxiety, and the anxiety caused more stress and inflammation, which made allergic reactions more likely. It was a dog chasing its own tail. If we could get the allergies under control, it would go a long way to alleviate some of the anxiety. In order to do that, we had to run tests.
The first test was a skin panel, which is a bunch of tiny needles filled with allergens to see if you react to certain things, like mold or ragweed. If you have an allergic reaction, a wheal (a hive, basically) will form where the needle broke the skin. They did panels up and down the length of both of my arms. The nurse left me alone to wait and see.
After a few moments, I looked down at my arms. Every single needle prick from the test had formed a wheal. It looked as if I’d been attacked by a swarm of mosquitos, and the itching was so intense that the effort not to scratch made me cry. After what felt like an eternity, the nurse came back, and was as alarmed as I was. She acted quickly. She covered my arms in Benadryl cream, gave me an antihistamine, and told me to stay in their office at least another hour to make sure I wouldn’t go into anaphylactic shock.
They sent me for bloodwork, since there was no way I could be allergic to literally everything. After my bloodwork, the only thing that came back positive for allergies was pine. Since most of my symptoms seemed related to to food, this was surprising, though in retrospect my symptoms were always worse near the holidays. I’d been unwittingly poisoning myself with my own Christmas tree. The rest were negative, including soy and all forms of seafood, both of which I was convinced I was allergic to.
My doctor sat with me for a long while to discuss further, and he diagnosed me with Chronic Idiopathic Urticaria, a fancy term for “hives of unknown origin”. We didn’t know why this was happening, or how. After we tried (and failed) to treat it with antihistamines, he prescribed me Xolair shots every month. It is an expensive treatment (even with insurance), it has a few side effects, and the injections are unpleasant, but it works. I wasn’t cured, but Xolair and an occasional antihistamine kept the worst of the symptoms at bay. I just try to ignore what Xolair is derived from3.
There was also the possibility that I had Mast Cell Activation Syndrome, but we decided not to test for it because the treatment is the same (antihistamines and Xolair), and it involves a painful bone marrow biopsy, which we didn’t think was worth it. I’m pretty sure I have it, though. The symptoms line up.
When I was diagnosed with ADHD and put on Adderall, my anxiety and my allergies improved dramatically. Up until fairly recently, I hadn’t had a single outbreak of hives in over a year, and the gastrointestinal issues that used to come with it ceased entirely. My allergist decided to space out my shots to every two months, and my condition is more or less in remission. This allergy season was tough, so at the height of the blooming flowers, I did get a few hives and hot flashes (hey, at least they won’t be a mystery when I go through menopause!). They went away within a day as long as I took an antihistamine. At least I didn’t get the relentless nausea and stomach cramping.
A few days ago,
of posted a link to a medical study in Notes. It is a recent study of neurodivergent women and co-morbid physical conditions. From what I understand, this is the first time that this has been studied in females. Considering that medicine knew next to nothing about the clitoris until a decade or so ago, this doesn’t shock me.4The study is from The British Journal of Hospital Medicine, and the summary is as follows:
Research and education into conditions that cooccur with neurodivergence are essential in shaping clinicians’ approaches to people who may present with a wide range of symptoms. Neurodivergence may influence a person’s style of communication, learning, attitudes, and behaviour, and they often experience inequity and rejection. This review highlights the huge burden of cooccurring conditions carried by neurodivergent women and girls whose medical issues have largely gone under the radar.
That had my attention. I read the whole study, and this section jumped out at me (obviously):
Neurodivergent females also report an increased tendency to develop allergies and skin rashes including eczema and hives (Chua et al, 2021). They have an increased prevalence of mast cell activation syndrome (MCAS), a condition that is attracting greater interest through its links with hypermobility and autism. Related to this observation is the finding that the prevalence of airway disease, and especially of asthma, is much increased among neurodivergent females (Weir et al, 2021). A relationship between intestinal dysbiosis and the occurrence of asthma and eczema in children with ADHD has now also been established. An increase in drug sensitivity and intolerance is recognised among both autistic females and those with ADHD, which may in part relate to MCAS.
I knew that my allergies and ADHD might be connected, but to see it laid out like that was incredible. I had definitely read literature that said people with ADHD had a higher rate of allergies than the general population, but I didn’t know about the link to MCAS.
The list of comorbidities goes on: fibromyalgia, IBS, gluten sensitivity, connective tissue disorders (like Ehler-Danlos), polycystic ovary syndrome, POTS (which is also connected to Long COVID), chronic pain, and more. Several of these disorders - like fibromyalgia - are difficult to test for and diagnose, and I know more than one woman who suffered from one or more of the above and were told that their symptoms were psychosomatic.
We know that women are often not believed at the doctor. We know that our pain isn’t taken seriously, as it is 2024 and we’re still expected to endure the pain of an IUD being shoved past our cervix with no pain relief except topical numbing and Advil (meanwhile, for a vasectomy, men get Valium and all kinds of good shit). We are told that we are overreacting, that we “just” have anxiety, or that we need to lose weight. If I had a dime for every time a doctor wrote off my symptoms due to my weight, I’d be a wealthy woman. What’s especially entertaining is that at the height of my health issues, I was the thinnest I’d ever been in my life.
Neurodivergent women face additional challenges in the doctor’s office. We may use masking to cover up our suffering. We may be anxious at the doctor due to sensory issues and/or ruminating on worst case scenarios. We may have a difficult time following verbal instructions, or we may have difficulties with interpersonal communication. Our rejection sensitivity makes us especially vulnerable in a health care environment, especially when we feel we are not being taken seriously.
Of course, this problem is much worse for women of color, trans and nonbinary people, and the poor/uninsured. I have good health insurance, I’m cisgender, and I’m white, which lends me a degree of privilege. Even with this privilege, it has been a struggle. I lived with untreated ADHD for almost thirty years, and suffered with allergy symptoms for nearly a decade before getting treated for either.
I have a follow-up with my allergist in July, and I can’t wait to touch base with him on this study. The more we find out, the more we discover that ADHD is not simply a disorder that affects behavior and executive function. More research needs to be done before there’s a clear answer as to why neurodivergent women are prone to these disorders, and I will be paying close attention to this as time goes on.
If we can’t have all the answers, we should at least be treated with respect and compassion. We deserve at least that, and as much as we are able, we should demand it from the doctors we trust with our care. While we don’t know exactly what causes these issues, or how to prevent them, the one thing I can tell you is that you know your body better than anyone. Don’t let anyone tell you that it’s all in your head. The facts and evidence say otherwise.
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It is here that I admit I started smoking again in grad school, and I switched to vaping. A lot of people with ADHD really struggle with letting go of the nicotine. My doctors are aware and they all say the same thing - they’re glad I’m not smoking cigarettes. When I feel ready, I will quit. I’m not there yet.
If you live in the NYC metro area and need an allergist, message me and I will send you his info.
Chinese hamster ovaries. No, I’m not kidding.
This article sent me into a Hulk-level of rage. They effectively (accidentally) castrated women during routine medical procedures, and then gaslit them about it. Cute!