I'm going to warn you in advance that this is a long story and I suck at being brief, but I've been experiencing a number of very problematic symptoms for over a year and a half now that I STILL am trying to explain and figure out how to finally feel better. It's a long list of symptoms, many of them constant or very frequent, that includes dizziness/lightheadedness/faintness, mild balance problems, difficulty concentrating or feeling "spaced out," and fatigue/lethargy that can sometimes be very difficult to deal with. Some less frequent symptoms include a feeling of muscle weakness (percieved or actual is uncertain), a mild, usually brief feeling of numbness or tingling in my arms and legs especially, mild headaches, often accompanied by a subtle, difficult to notice ringing in my ears, and a number of other things I haven't yet mentioned.
Before I continue, it's worth mentioning that I previously started a few threads about this in the process of trying to figure out the cause(s) of my symptoms, so I may as well link to them if anyone wants to look at them.
https://patient.info/forums/discuss/mysterious-dizziness-and-other-symptoms-567591
https://patient.info/forums/discuss/unusual-chronic-migraines--570711
https://patient.info/forums/discuss/some-kind-of-autonomic-problem--583855
Although I'm still trying to find a cardiologist who isn't an a*****e and waiting for the medical system to take its sweet time before I can get officially tested and diagnosed with it, I'm 90+% sure I have a form of dysautonomia called POTS (postural orthostatic tachycardia syndrome) and have been pretty sure about it since March or April of this year. POTS fits many of the frequent symptoms I haven't mentioned yet VERY well, such as getting "winded" and noticing an elevated heart rate much more easily than I should, sweating excessively, occasional temperature regulation issues, and so on, but that's not the only reason I'm so confident I have it. I did a home test with my mom's pulse occimeter sometimes called a "poor man's tilt table test," (I'd link to the YouTube video where I learned about it, but I don't think that's allowed here) and my heart rate gradually went from under 90 bpm lying down to over 130 bpm after 10 minutes of standing next to my bed, a result that would fulfill the diagnostic criteria for POTS in two ways if it were replicated in an official tilt table test. Furthermore, after wearing a holter monitor for a day, I've been officially diagnosed with tachycardia if not POTS just yet.
However, that's all just contextual information. This thread isn't about POTS and what I think I do know. It's about what I still don't know: what could be causing my POTS, and how do I explain the symptoms that POTS doesn't seem to adequately explain on its own? POTS is a syndrome, not a disease, so it has to have something else causing it. Many of the possible causes happen to be autoimmune disorders of some kind, but I'm a lot less clear about what is or isn't likely as a possible cause for my POTS.
Many of them have been uncommon occurrances and/or not particularly noteworthy, but I have had at least a few symptoms that POTS doesn't seem to explain well. Starting from very early on, I've occasionally had a flushing or hot feeling in my face, a vague hoarseness, dryness, or burning sensation in my throat (sometimes with an isolated cough or two, but never a series of them), mild "sniffles" or running of my nose, or watery eyes. These have been infrequent and felt mostly like minor annoyances. Even more rarely than that, I've had one or two instances of feeling sensitive to light or noise. Also, a month or two ago I seem to have had some alopecia; I just shed hair and developed an unusual, oval-shaped bald spot on the right side of my head that looked nothing like male pattern baldness (I'm only 27 and have excellent genes on my dad's side of the family regarding hair loss). And finally, I only recently noticed that I seem to be getting red marks on my skin that don't go away, particularly on my chest, legs, and maybe my butt. When I showed the ones on my chest to my mom, she seemed to think they were hives. On a related note, I do recall having one or two isolated instances of feeling inexplicably itchy in the past.
At the end of the day, I'm not sure what to conclude about what this all might mean regarding the cause of my POTS. I have relatives on both sides of the family with Multiple Sclerosis, but it doesn't seem likely it's that. I've read about a few autoimmune conditions, such as Sjogren's, lupus, or scleroderma, that seem like they might fit at least some of my symptoms that POTS can't explain, but it's hard to say whether I fit the profile of symptoms overall. Although POTS itself is also a good deal more common in women, I also seem like about the LEAST likely demographic group to have some of these conditions as a 27-year-old white male. This is especially true of Sjogren's; apparently about 90% of people with it are women, and it's also more common among older people of color. With statistics like that, I'd be lucky not to be laughed out of the doctor's office for seriously considering it as a possibility.
Another possibility that goes along with POTS is Mast Cell Activation Syndrome, which I believe is considered an autoimmune condition if I'm not mistaken. After all, it is true that a number of the symptoms I mentioned seem to resemble those of an allergic reaction and/or are listed as possible symptoms of MCAS. However, I actually did consider allergies as a possible contributor early on before I knew POTS even existed, and a few things don't fit. For one, I was taking antihistimines for a while, and they didn't seem to have any appreciable benefit for me. Secondly, I did get allergy tested, and none of the allergies it revealed were severe like I would expect if that were the main culprit. Finally, although my symptoms fluctuate a lot over time and seem like they might have some loose connection to the weather, they have NOT seemed to vary on a longer-term, seasonal basis. That suggests that seasonal, outdoor allergies probably don't play a major role, at the very least.
Admittedly, I'm REALLY hoping it's not MCAS because that sounds like even more of an ordeal to go through in the medical system than POTS is. It seems like, compared to POTS, it's just as poorly understood, just as likely to get doctors dismissing you as a hypochondriac, and MUCH harder to test for and diagnose. More importantly, I might be unable to do much about it for financial reasons. I KNOW there are plenty of potential allergy issues with this house, but I don't have the financial resources right now to fix them or move somewhere without them.
Anyway, what do you all think? Are there any particular conditions that you think are likely to be causing my POTS? Do you have any advice on what to do about the situation?