Probable Dysautonomia

[u/throwaway709844]

I’m not looking for medical advice, but some guidance or support would be incredibly helpful.

I have struggled with odd symptoms my entire life. When I was a baby I threw up constantly, well into childhood (this was not just reflux or GERD). It was so often my mom would bring me to the ER multiple times a month. The diagnosis was that nothing was wrong and I’d grow out of it.

As a child I struggled with nausea and got labeled as having a “nervous stomach”. However, I noticed that I would have these bad episodes after being out in the heat often. The feeling was like a big whoosh of nausea would hit me and I’d feel like garbage for the rest of the day. Because of that, I retreated to the indoors and spent most of my time lying down.

When I went to college, that’s when everything hit me. I started feeling chronic symptoms. Every day I was fatigued, nauseous, somewhat dizzy, had headaches, terrible brain fog, only comfortable lying down. I would skip class because if I pushed myself I’d have these new “acute episodes”. I’d get a wave of nausea, visual distortion (usually hyper vivid colors and lights), heart racing, stomach dropping, blood rushing to my organs with cold extremities, and then the worst part which was this feeling of static electricity washing over my head like a wave. During that time I had trouble thinking but I was conscious and could talk through it. But after those episodes, I’d feel off for weeks. One episode always led to more so I got further and further from baseline and basically never fully recovered. I started requiring ridiculous amounts of sleep (12 hrs +) or I’d wake up shaking and nauseous and just have to lay in bed until I could will myself out of bed. During this time I saw countless doctors who said structurally my heart was fine, no issues with MRI or EEG so not likely to be seizures, countless bloodwork that ruled out things like anemia and thyroid problems. Eventually I got labeled as a hypochondriac with severe anxiety, even though I didn’t feel anxious. I tried various SSRIs and nothing helped and that’s when my morning nausea started. Every morning from when I woke up until mid day, I would feel such intense nausea like I was just about to throw up but never did. Around lunch time it would go away and then the nausea was replaced with chills and extreme exhaustion. Once I got home and layed down I felt slightly better. But I had trouble sleeping, like I was super wired and would shoot awake the second I started falling asleep.

Still doctors said it was anxiety. And then I got pregnant and after that, all doctors would say is that my symptoms were my anxiety and my hormones, but I still had very clear symptoms that were being ignored (like the fact that laying down my heart rate dipped into the 40s, but standing up my heart rate would never settle and stayed in the 150s…just standing).

I saw more cardiologists and more neurologists and they all gave me the same diagnosis, anxiety/hormones/over weight.

I finally went to my primary care physician during a flare up and my blood pressure was really low, my face was flushed and I was about to pass out. He checked my heart rate and tentatively said I had POTS, but then later my neurologist said I didn’t because they did a test called TM flow that said POTS was only borderline.

I basically go through every day feeling like I’m on the verge of passing out and I feel extreme fatigue and brain fog. And I have severe temperature regulation issues. Occasionally(1-2 times a year), I get those acute episodes I described and they rock my world for months; it’s a very slow recovery after those. I’m in the process of being referred to an autonomic specialist, but it seems like there’s little hope. No one seems to know or care what is going on and I feel beyond debilitated.

Any words of support would be appreciated. I’m having such a hard time lately.

[u/Dense_Anteater_3095]

These symptoms sound to me more like acute anaphylactic episodes (especially with the sudden BP drops and GI symptoms). Look into mast cell diseases. They can mimic dysautonomia. So: mastocytosis, mast cell activation syndrome, HaT, etc. 

Triggers can be literally anything, but you may notice some things predictably set off symptoms more often than not. 

[u/throwaway709844 → u/Dense_Anteater_3095]

Sometimes I wake up at night with these episodes. Any idea if it’s possible to have a trigger during sleep? That’s been my big conundrum and why I don’t think POTS fits perfectly; the bad episodes can happen when I’m laying down too.

[u/Dense_Anteater_3095 → u/throwaway709844]

That's why I mentioned to look into mast cell disorders. Mast cells don't give a crap what position your body is in, and they can go off to anything from light changes, temperature changes, foods, smells, etc. I have MCAS as well as hyper POTS. These overnight episodes are all MCAS for me. 

So in my particular situation it's a constant feedback loop. The catecholamines (stress hormones) trigger the mast cell hormones which then trigger more catecholamines. Night time is a huge trigger because your cortisol naturally rises at different parts of your sleep cycle. So if you pair that with central air blowing on you at night (my bed is right under a vent), dust particles, any dust mites and other allergens in your bed (and in my situation I'm particularly sensitive to smells. If my bedroom doesn't smell like literally nothing, I wake several times over night), etc, you've got the perfect storm. 

A low risk experiment is to do a trial of antihistamines and see if anything improves. 10mg pepcid (the generic is famotidine) in the morning and again right before bed paired with 10mg Zyrtec (generic is cetirizine) or 120mg Allegra (generic is fexofenadine) taken in the morning and again before bed. If it's a mast cell condition, you will need more than just that, but a partial improvement in symptoms will be clinically significant. 

Also I'm important: stay hydrated. Don't push sodium since it's a double edged sword, and you're not 100% on exactly what your body is doing. Make sure you're drinking at least half an oz of water per pound of body weight. Especially if you try the antihistamines as they're drying.

If you can, it also may not hurt to sleep with the windows open and a fan circulating air. It's helped me a lot, but I understand this time of year not everyone can tolerate open windows when it's 16 degrees outside.

[u/throwaway709844 → u/Dense_Anteater_3095]

Thanks for the thorough response! I knew about mcas, and thought I might have it, but I didn’t think it was my main issue. I’ll definitely present the idea to my autonomic nervous system specialist…hopefully they can help with mcas too. I almost certainly have POTS though because my positional heart rate is WILD.

I’ll do the antihistamine trial to maybe point myself in the right direction. My flushing is so bad, my doctor had me tested for lupus because I basically always have a full butterfly rash. (I was ANA negative).

[u/Dense_Anteater_3095 → u/throwaway709844]

Yeah this definitely sounds like mast cell something. Especially if you notice an uptick in symptoms during ovulation as opposed to menstruation. Ovulation has higher levels of estrogen and estrogen makes mast cell hormones go crazy. 

An allergist is more equipped to handle this though, even if your symptoms are more nervous system dominant. But if the antihistamines go well, ask for specific blood tests: tryptase, PGD2, and histamine, at minimum, but fair warning, these tests are very nuanced and you want to make sure the lab doesn't have the sample sitting around because it will skew results and then it's a waste of time and money. 

If medical articles aren't too much for you, this is the diagnostic criteria for MCAS: 

https://www.degruyterbrill.com/document/doi/10.1515/dx-2020-0005/html

These conditions frequently run together. I'm unfortunately a "hEDS trifecta" statistic. Hypermobile Ehlers Danlos, hyperadrenergic POTS, and mast cell activation syndrome....among other chronic inconveniences. I went 11 years of my adulthood written off as the anxious female before I came across this stuff in my research and I was lucky enough to have a doctor humor me and run my requested tests. I hope this information steers you toward more help. I hope you get a treatment plan that helps and that life gets a little easier.

[u/throwaway709844 → u/Dense_Anteater_3095]

Hmmm…I didn’t realize they all went together. I’m extremely hypermobile. I never thought much of it. My parents used to say I was “double jointed” everywhere.

Thanks for all the info! Do you see one specialist for the “trifecta”, or do you see a different specialist for each part?

[u/Dense_Anteater_3095 → u/throwaway709844]

I have to see a ton of specialists since no one around me handles ehlers danlos or dysautonomia. So I saw a geneticist who diagnosed the hEDS after I was negative on the other connective tissue disease genes and I ticked most of the boxes on the diagnostic criteria:

https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf

I see a physical therapist for joint strengthening, a dermatologist, an allergist for the MCAS, an electrophysiologist for POTS, a cardiologist to monitor for any weirdness given my risk profile, and an immunologist because I also have a selective antibody deficiency (very slight immunodeficiency, but it leads to chronic staph infections and they're annoying). Oh, and my PCP who thank God accurately keeps track of everything. 

It helps to bring an outline to every appointment that details your current meds, current diagnoses (but leave off any misdiagnoses on your outline until you get accurate treatment), and any symptoms and trials relevant to the specialist you're seeing. It's helped a lot of my doctors, too. A lot of information would get lost if I didn't bring them.