Mysterious dizziness and other symptoms
Posted , 4 users are following.
For about a year now (I noticed symptoms last February but feel they got worse around Easter) I've had bunch of strange, disruptive symptoms that have never completely gone away, one of the most notable being dizziness or lightheadedness. Over the last year, I've had numerous doctors appointments with multiple specialists and had a number of tests done trying to identify the cause and alleviate the symptoms, but I've had little success.
The dizziness or lightheadedness, which is probably the most notable symptom, fluctuates in severity over time but has never gone away completely since it began. I'd describe it as a floating, rocking, or swaying sensation and sometimes a feeling of being pulled in a direction (not always the same direction). I think I can safely conclude this isn't vertigo because there isn't a spinning sensation or feeling that I'm going to throw up and I had a VNG that came back normal. The dizziness also seems to worsen with head movements, in the dark, or with my eyes closed. This dizziness is accompanied by actual balance problems, although these are not severe enough to have made me fall over so far (but I've come close once or twice). These also worsen with head movement or darkness.
On a potentially related note, I've had other symptoms that may be connected to the dizziness but are less disruptive and/or less frequent. For instance, I've had either headaches or pressure in my ears/head. I don't know how to distinguish which it is, but it's basically a throbbing, congested sort of feeling in my head that can be very bothersome but not necessarily outright painful. Although I don't experience a lot of ear ringing and it's not that loud when I do, I have noticed faint ringing in my ears multiple times while lying in bed, usually along with a headache. These come and go fairly unpredictably, but they don't happen every day and they vary in duration (usually a few to several hours).
Apart from these, I've had some disruptive cognitive and psychological symptoms. The biggest, most noticeable one is difficulty focusing and tending to involuntarily "zone out." This happens pretty often and definitely seems more extreme than before symptoms started. Additionally, I sometimes have felt drained of energy and/or physically weak (though I don't know whether I really was any weaker physically). This is less frequent but can be very problematic when it happens. Finally, although I've had Generalized Anxiety Disorder since childhood, there have been some issues with anxiety and mood on and off. However, I think these are a result of my ongoing symptoms and the inability to explain or treat them effectively more than they are symptoms themselves.
Last comes the really weird stuff that doesn't seem like it'd be connected but has been occurring together with those other symptoms. One of the first things I noticed pretty suddenly was a tendency to get "winded" way too easily by relatively mild physical tasks that had never given me trouble before. I was working retail when this began, and one day when I was stocking shelves (which I'd done many times before without issues) I got tuckered out and had to stop to catch my breath, at which point my boss asked if I was okay. I also feel like I may have started sweating more than I should at times. When I was doing vestibular rehabilitation exercises (before putting them on hold when they didn't seem to help after over a month), I would end up drenched in sweat by the time I was done even though they weren't that strenuous and I was in a cool basement. Also, at times my face just randomly feels hot. Normally this happens when I'm in bed for some reason, but it has also happened elsewhere.
I've already seen multiple types of doctors and done multiple tests, but it hasn't gotten me very far. I had blood work done twice, and the only thing outside of the normal range was my vitamin D. I got it back up to normal levels, but my symptoms didn't change. I had a VNG and an MRI that both came back normal. I've had a low-frequency hearing loss in my right ear since childhood, but hearing tests didn't show any changes to my hearing loss. I had neuropsychological testing done, which didn't show any indications of a neurodegenerative disease, and my only noticeably low score was in processing speed (which also dragged down the overall score for attention/concentration). I also was referred to a neurootologist by my ENT after he told me he couldn't do anything more to help me. The neurootologist did a bunch of quick tests involving head movement, eye tracking, a tilting chair/table, etc. and found no signs of anything wrong with my inner ear. The only test that showed anything wrong with me was balance testing I did before then in this machine that looks like a voting booth with tilting walls and floor. And the neurologist didn't have much to tell me either after all that apart from mentioning vestibular rehab exercises similar to the ones I had tried previously and other activities that may improve balance (like martial arts, etc.).
At this point, I'm at a dead end in terms of doctors to talk to and potential explanations and treatments to pursue. And my symptoms are still the same as ever. Our best guess for a cause is something called Persistent Postural-Perceptual Dizziness, but I've never had trouble with things like grocery shopping, reading, or looking at computer screens, I can't identify anything at the time likely to have triggered its onset, and it doesn't explain all of my symptoms, especially not the weird ones. Plus the main treatments for PPPD seem to be vestibular rehab exercises, which I tried and didn't seem to help, and antidepressants, which I've already been on the entire time both before and after symptoms started.
Does anyone have any possible causes, treatments, or other suggestions that I might not have considered?
0 likes, 22 replies
margaret22116 SLJoosten
Posted
If it is that it needs a good rheumatologist or an immunologist to diagnose it. Ent specialists, gastro, neurologists, you name it....were unable to diagnose me and I spent years going from one to the other. I got a proper diagnosis after a visit to a rheumatologist who referred me on to an immunologist. Diagnosis still took a year with her.
12 years later after long treatment I am in remission. I had all of your symptoms, including the zoning out and more. Obviously I cannot diagnose something like that. I am not a dictor but recognise everything you talk about.
You may benefit from contacting The Vasculitis Foundation in the US. I believe they have a helpline. They can discuss symptoms with you and advise on good doctors.
SLJoosten margaret22116
Posted
Well, I've had the anxiety issues since long before any of this started. I also question if my dizziness is vertigo at all (seems more like presyncope), and at this point I'm not sure if it's actually affecting my vestibular system at all. Nonetheless, it's definitely worth considering all the possibilities, and Lupus is one I never even looked into. Actually the hot face thing is one of the hardest symptoms to explain on the basis of migraines, so if it can explain as many symptoms as you claim, including that one, it may be worth considering. I'll have to look up some information on it.
margaret22116 SLJoosten
Posted
I must admit I didn't know what presyncope was. Just looked it up and that more fits what I had going on too. Sometimes it is difficult to explain these things.
The feeling hot in the face or head thing is so classic Lupus. Sometimes it is accompanied by actual flushing in the face and or upper torso but not always.
When you read about it though it will list all kinds of symptoms you may not have. You can have some of the symptoms. They are so many and so varied. Some of them quite extreme.
You may or may not be aware that Venus Williams has Sjrogren's...very very similar to Lupus in terms of symptoms. Yet she obviously can still play and live a 'normal' life. These illnesses have a big impact but are not always as limiting as they may look on paper. Different for everyone and disease control is so good now.
margaret22116 SLJoosten
Posted
I am tempted to send you some links to read but would have to pm them to you. The site doesn't seem to like us posting links.
SLJoosten margaret22116
Posted
Well, I'll be honest; I read up a bit on lupus from multiple sources, and I think it seems like a stretch at best given my symptoms and other details about me. I can't rule it out completely, but, even with the unusual parts and details that don't fit, both migraines and even PPPD seem more probable to me. Really, it seems like the fatigue, "zoning out," and maybe the facial flushing are the only parts that seem to fit well (some of the other things can occur with Lupus, but they seem to be uncommon).
However, there are some seemingly important details that just don't seem to fit. For starters, Lupus is a lot more common in women (migraines are more common in women, too, but by a much smaller margin) and also more common in racial minorities, and I'm a white male, so I'm not exactly in a high-risk demographic group. Also, while I do sometimes get a feeling of weakness in my joints especially, I have not had any actual joint pain. There are other inconsistencies, but I don't feel like mentioning them all right now. Long story short, I'm highly skeptical about the possibility of Lupus. Thanks for at least putting the possibility of an auto-immune disorder on my personal radar, though.
margaret22116 SLJoosten
Posted
I think also that a lot of auto disorders have overlapping symptoms so not necessarily Lupus. I also think that reading all the symptoms and comparing your symptoms can be misleading. There is not really a classic disease pattern as such. Seems the symptoms of sufferers are so disparate and range ftom very mild to very acute. That is why diagnosis is terribly difficult.
Anyway, good luck with trying to find answers. I still feel a visit to an immumologist or rheumatologist might be a positive step.
SLJoosten
Posted
Well, I haven't been officially diagnosed and treated by a doctor yet since I'm still waiting on appointments, but I think I've finally figured out what my symptoms are after two more discussions in other boards and lots of research, so I thought I'd share here, too, for those of you wondering.
It seems that my symptoms are actually an autonomic nervous system problem called postural orthostatic tachycardia syndrome or POTS. I'm almost certain about this because I did a self-test at home using my mom's pulse occimeter and I met the diagnostic criteria for it in two ways. I won't go into the specifics of POTS or the test I did unless someone wants me to, but my heart rate, which wasn't even my most noticeable symptom, went as high as 140 beats per minute from simply standing in place in front of my bed for 10 minutes. That's the kind of heart rate most people would only get from strenuous exercise.
This also would seem to explain why those vestibular rehab exercises made me so miserable and sweaty. Most of them just involved balancing while standing still without moving my feet under varying conditions, so they were a lot like the standing still I did for the heart rate test only worse. Anyway, it seems that my vestibular system probably has little or nothing to do with any of this, and, if it's involved at all, it's probably because, like my brain, it's not getting enough oxygen, especially when I stand up.
Basically, then, I've just got to wait for the appointments, referrals, tests, and so on to get properly diagnosed and treated by a doctor for this (and they'll probably want to verify the results I got with the self-test) while working on some of the lifestyle changes and such in the meantime. I don't know how smoothly or not smoothly treatment will go, but it's a relief to feel like I finally have an answer, at least.