It was a Saturday morning when something in me snapped. I had no strength to get out of bed, and even if I did, it seemed like nothing I would do today would matter. The massive weight of the numbness pinned me to the sheets, and tears began to flow. But what was I upset about? I had no idea. All I knew was that I couldn’t stop, and this meant the all-too-familiar brain inflammation-induced depression was back.
In hindsight, there were signs all week that this was coming. I’d had a hard time staying on task with my work despite how much I enjoyed it. I’d had more difficulty than usual getting started on anything. Yesterday, it had gotten to the point where I realized it would be better to take a day off from productivity rather than slog my way through hours of frustration.
And yesterday, something else had happened: my seasonal allergies returned in full force.
For years, I’ve dealt with allergies every spring, but I’ve always had more pressing concerns––or so I thought. At times, I was fighting for my life against brain inflammation. I was sometimes in true danger from the suicidal thoughts or food restriction that defined my flares. So suffice it to say that a stuffy nose wasn’t exactly at the top of my list of concerns.
But on that recent Saturday morning, my whole perspective began to change.
After three hours, when I’d finally made it downstairs, I made a beeline for the medicine cabinet and popped two Alleve’s and an Allegra. I didn’t think it would work. I thought I might need steroids instead, but I figured I’d give this a try. But sure enough, thirty minutes later, I was completely myself again. My family marveled at the dramatic change in my demeanor. I carried on the rest of the day as if nothing had ever happened.
To most people, the thought that a painkiller and an antihistamine could arrest a depressive episode in mere minutes is preposterous. It doesn’t make any sense. Depression is a mental health condition that can’t possibly have anything to do with inflammation or allergies… Right? Wrong. In many of us, depression is a symptom of a brain physically under attack. Stop the attack, and you stop the depression. Just as naproxen (Alleve) or ibuprofen (Advil) would reduce the swelling of a sprained ankle, they can inhibit the same inflammatory chemicals in the brain.
But why would I get inflammation in my brain in the first place? In the past, I’ve had flares from viruses and infections. But I’ve been isolating with my family for almost a year and a half. I had no other symptoms to suggest I’d caught a bug… But I did have allergies. It seemed like way too much of a coincidence that both my allergies and this flare up would happen at the same time.
More Evidence for my Allergy Hypothesis
At this point in my neuroimmune journey, I feel like I’ve tried it all: months and months of antibiotics and antivirals, steroids, NSAIDs, IVIG, Rituxan, and countless vitamins and supplements. I tried going to the more-local research hospital for immunology a few years ago, and they just ran some allergy blood tests and sent me on my way with no real help. But I’d never done an allergy skin test, and I thought I’d try a different immunologist. What did I have to lose anymore?
In the seven days I had to go off my Allegra before the allergy skin testing, I began declining all over again. It was the same lack of concentration and the same mood lability as earlier in the spring. By the morning of the test, I felt so unhinged that I was slamming doors and felt like I wanted to crawl out of my skin. It’s a truly awful feeling when PANS comes and takes you over and makes you feel like someone else.
“The first thing I’m doing when I get home is taking an Allegra,” I muttered to my dad as the nurse walked in with the trays of test serums.
“I know how you feel,” she said. “I used to have really bad allergies myself.”
Oh yeah? I thought to myself. Do your allergies make you lose your mind, too? But I smiled back.
Skin tests are the most accurate form of allergy test for most people. Blood tests often miss allergens. You can test negative in blood and still have a significant allergy.
The skin test caught even more allergies than the blood tests I’d had years ago.
Read more: Skin Test vs. Blood Test
As it turned out, I’m allergic to almost everything, but especially dust mites and grasses. The problem with being allergic to dust mites is that they’re everywhere all year long, and it’s almost impossible to avoid them completely. And I’m so allergic to these things that I’m asthmatic, with my lungs functioning as well as an octogenarian’s. The asthma was a complete surprise because I’ve never had a true asthma attack, but those lung function tests don’t lie.
And again, my typical allergy symptoms are not that bad. Sure, I get a stuffy nose, and my eyes water if I’m around grasses a lot, but I wouldn’t have sought out an allergist just for these symptoms… Yet as it turns out, my allergy symptoms are far more insidious.
Not “Just Allergies”
What exactly is an allergy? It’s an abnormal immune response to a harmless substance. For most people, that immune response looks like sneezing, runny nose, or watery eyes. But for people like me, it also looks like depression, mood lability, panic attacks, and tics––in other words, allergies can trigger PANS.
I’ll say it again for the people in the back: Allergies can trigger PANS.
If you have a neuroimmune condition like PANS, you may be overlooking a major driver of symptoms if you’re not addressing any allergies you have. And if you have a psychiatric diagnosis and tend to get worse during allergy season, you might also want to look into allergies. As I tell many people who have written to me, just because you don’t fit the narrow definitions of PANDAS or PANS doesn’t mean your psychiatric condition doesn’t have an immune component. The mind is inseparably connected to what’s happening in the body.
When it comes to allergies, you have to keep in mind that they may be constantly provoking your immune system. If you let them run wild, you’re potentially getting systemic inflammation. If you have a neuroimmune condition, you’re already in an inflammatory state. The last thing you need is any additional source of inflammation.
I once hoped that treating Lyme disease and any other infections would get me better. I thought it was all a matter of treating the infections for long enough and addressing the autoimmune component at the same time. But my doctor thinks that the inflammation from allergies is often what causes people to not be able to deal with infections and get symptoms that are attributed to chronic Lyme. Essentially, getting something like Lyme, Strep, or EBV is the proverbial straw that breaks the camel’s back.
It’s sort of like everyone has a bucket’s worth of inflammation that they can handle. If the bucket is only partly full, your body functions as usual. Plenty of healthy people are exposed to Lyme or viruses and go on with their life as if it were only a blip. But if something causes that bucket to start running over, you can get all sorts of symptoms that negatively impact you, including PANS. In other words, allergies can put your bucket already at its max, and then all you need is the wrong trigger to get it spilling over. Empty the bucket a little and your body may be able to deal with any lingering pathogens and may stop attacking itself.
What Can You Do About Allergies?
For people with mild seasonal allergies, the advice is usually avoidance of triggers and taking antihistamines as needed. However, it’s important to keep in mind that antihistamines are just bandaids––they don’t address the underlying problem.
With my allergies as severe as they are plus the asthma, my doctor felt like I needed to do allergy shots.
Allergy shots are when you get injections of increasing amounts of substances you’re allergic to. Over time, this desensitizes your immune system to the allergens, and you get less inflammation and allergy symptoms over time. The trick is it has to be done gradually enough to not make your symptoms worse.
If you can’t do needles, then sublingual immunotherapy is also an option.
I attempted to do a faster version of allergy shots called cluster immunotherapy at first, and after four rounds, it started making all of my PANS, ME, and POTS symptoms worse––strong evidence that my allergies are at least contributing heavily to these conditions for me. So now I’m going to do only one or two, rather than six, shots one time a week. Hopefully I’ll be able to tolerate this more gradual build-up schedule. People with PANS and ME can have very sensitive immune systems, so I’m going to take it very slowly to be safe. The only major downside to going slower is that it takes longer to see benefits from the treatment.
As of now, I’m not planning to do any more rounds of Rituxan if I can help it. I’ve also managed to go over three months without any IVIG! Both helped tremendously before, but it’s become abundantly clear that IVIG and Rituxan are neither complete nor permanent solutions for me. As far as my doctor and I are concerned, the worsening of all of my symptoms related to allergen exposure is a smoking gun. Finally, after all of these years, I may have gotten to the bottom of why I’ve not gotten all the way better.
Of course, everyone with a neuroimmune condition is unique. We all have different triggers and often different treatments that help us. But I’m sharing all of this because I wish I had known seven years ago, when I started this blog. So if you are just starting out your neuroimmune journey, please consider a thorough allergy workup. And the great thing about allergy treatment is that it’s typically covered by insurance, and it’s not the slightest bit controversial. You can go to a local allergist rather than traveling hundreds or thousands of miles.
Even if you’re like me and don’t think your allergies are a big deal, you never know… Your allergy symptoms might actually be your neuroimmune symptoms.
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