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This discussion will mark the third lengthy discussion I post on this site about the symptoms that have stubbornly continued to plague me for over a year now with no diagnosis or solution. Still, I think I've been getting closer to an explanation slowly but surely, hence switching to more appropriate forums here to ask about things. I plan to explain the important points again right now (I've gotten used to having to explain it over and over again even if it gets tiring), but, in the event that you want to take the time to read the many lengthy posts in my other two discussions, I will link to them here.
Anyway, I've been experiencing a laundry list of fluctuating, debilitating symptoms on a more or less constant basis since around February of 2016, and, even after seeing multiple doctors (general practice, ENT, neurologist, neurootologist, physical therapist, psychiatrist, etc.) multiple times and having multiple tests done (MRI, VNG, hearing test, various tests of vestibular or cerebellar function, neuropsychological testing, balance testing in a booth with tilting floor and walls, blood tests, neck x-rays, etc.), I still haven't figured out what is causing all my symptoms or what I can do about it. The only results that haven't been normal (other than the hearing impairment in my right ear that has been consistent since we discovered it in 2nd or 3rd grade) were the balance testing, which was all over the place, but verified that my balance was impaired somewhat, my vitamin D, which I got back up to normal with no change in symptoms, my mental processing speed, which was in the 8th percentile but was the only cognitive function in the neuropsychological testing that wasn't average or better, and not quite enough curvature in my C3 and C4 vertebrae. My symptoms have significantly impaired my ability to function, so needless to say it's kind of an urgent matter for me to do something about them.
As for my symptoms themselves, the most consistent and noteworthy are a constant sense of dizziness/lightheadedness and mild to moderate balance problems. Both of these are my only symptoms that have never gone away, but even they vary in severity on a day-to-day basis. My dizziness is basically a lightheaded, "floaty" feeling like I might faint (in fact, I used to be concerned that I might pass out in the middle of a work shift when symptoms started) combined with a swaying or rocking sensation. I do not get a feeling of myself or the world around me spinning or of feeling like I'm going to throw up. Therefore, my dizziness seems to be some combination of presyncope and possibly disequilibrium. After all the vestibular stuff I've gone through that has gone nowhere, I think I can say with confidence that I don't have true vertigo and my vestibular system has little to nothing to do with the problem, however. Both strangely and thankfully, I have never once passed out (to my knowledge) or fallen over in the over a year that this has been going on to a varying degree 24/7; I think I've come close to both at least once or twice, though.
There are a few things that make my symptoms worse that I've noticed. For one, it tends to become worse the more upright I am, being worst when I'm standing or walking and best when I'm lying down (with sitting falling somewhere in between). Next, it consistently worsens with head and neck movement (it usually worsens for a while after shaving or showering due to the neck movement, for instance), though up and down head movement seems to exacerbate it more than side to side does. Physical activity, even mild activities that I had no problems at all with before symptoms started, worsens symptoms quite reliably, too, but I'll get into more about that later. Finally, while I'm not sure of the specific relationship, it feels like stress or weather changes can also worsen my symptoms sometimes.
Other than the dizziness and imbalance, there are quite a few other symptoms that tend to come and go with varying frequency. Some of these are cognitive, like difficulty focusing, tendency to "zone out," lack of physical and mental energy, and so on. I sometimes get a feeling of weakness when symptoms are bad, especially in my knees and my limbs in general. It's not uncommon for me to get headaches with a pulsating, throbbing feeling (sometimes with a low-pitched, quiet, and hard to notice ringing in my ears). These range from barely noticeable to highly uncomfortable, but I wouldn't call them painful. At times I have gotten "chills" or felt hot and sweaty for no good reason (in a basement that's under 60 degrees Fahrenheit, for instance), so my temperature perception seems to be off at times, too. Although uncommon and brief, it does also seem like my limbs go numb or fall asleep more easily than they used to, especially my left arm and the pinky and ring finger on my left hand. Finally, I used to have stomachaches that started at the same time as my other symptoms, but they went away after I was diagnosed with irritable bowel syndrome and started taking a probiotic. It may be that they were not actually IBS and it was no coincidence that they started at the same time, but I'm not sure.
Not that I've ever been especially athletic or fit (in fact, my gross motor coordination has always been kind of clumsy, although my fine motor coordination is considerably better), but one of the most conspicuous aspects of my symptoms (and one of the first I noticed) has been an exaggerated intolerance for physical activity. In some cases it's even been routine activities that I had done many times before symptoms started with no problems suddenly starting to give me trouble. Things like stocking when I was still working retail, picking up dog poop in the back yard like I had done every so often in the past, going up and down stairs multiple times with laundry baskets/hampers, or even just making my bed have often made me notice my heart rate going up and left me hot, sweaty, and "winded" as though I had just finished running laps or something. Back when I thought something might be going on with my vestibular system and was doing vestibular rehab exercises (which I stopped after they didn't help at all after over a month), I would do these exercises in a cold basement that mostly just involved balancing in place, stepping, or marching in place, yet I would almost invariably be overheating and drenched in sweat after finishing them. I've also had a burning sensation in my throat on rare occasion, which I think is probably dryness from catching my breath, or tremors, which are mainly in my hands and sometimes my legs; these typically seem to happen with activity, but I think there've been at least some occasions where they occurred without it.
Anyway, those're the important details about my symptoms. Along with the multiple doctors' appointments and tests, I've gone through stages in what I suspected might be causing it all. At first I thought it was Meniere's Disease brought on by allergies due to another period of time in 2012 when I also had dizziness and was diagnosed (perhaps erroneously) with Meniere's. But nothing was pointing to actual vertigo or vestibular problems, and allergies seemed to have nothing to do with it. For a while, I didn't know what to suspect, with something called Persistent Postural Perceptual Dizziness being the best guess, although even that didn't seem to fit in certain ways and couldn't explain certain symptoms. Later, I thought maybe it was vestibular migraines or some other unusual form of chronic migraines. However, my headaches weren't painful, light and sound sensitivity, as well as ocular symptoms, were extremely rare and relatively mild, and there didn't seem to be distinct "attacks" with any kind of warning or distinct pre- and post- phases. Then I was informed of something called Atlas Subluxation that can cause migraines and many of my symptoms themselves and would explain symptoms worsening with neck movement. However, I really had no neck pain and hadn't noticed stiffness in my neck, and just neck x-rays just recently showed that my atlas and axis (the first two vertebrae) were completely normal.
Very recently, though, I ended up looking into vasovagal syncope and various types of autonomic problems, and it seems like a lot of the symptoms and stuff I'm finding match what I've been experiencing very well, almost to a T. There seem to be two main questions regarding this possibility. Why does it appear that I've never actually fainted when I've been feeling faint 24/7 for over a year? And, if my autonomic nervous system has been going nuts for a year straight, why would it possibly go so crazy on such a consistent basis for such a long time?
So, after saying all of that, my question to all of you is this: do you have an ideas about what specific autonomic problem I might have or what might be causing it? Also, what kind of doctor would I even see about diagnosing and treating this? I do appreciate your reading this long post and any useful possibilities or advice you can provide. Slowly but surely, I feel like my hunches about possible causes are getting closer and closer to matching up with my symptoms, so I can only hope I really am getting closer to root causes.
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