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
henryroth SLJoosten
Posted
I have word for word and symptom for symptom everything you've just described. I've also had just as much testing (probably a bit more actually). I apologize but I have yet to find a diagnosis, and it's been two years for me. If you want my personal opinion, I believe it's a vestibular migraine.
Do you present any ocular issues? (Sensitivity to light, difficulty focusing etc.)
Have you tried any medication or supplements?
Do you live in the U.K. Or the us?
SLJoosten henryroth
Posted
I'll answer the last question first. I'm in the U.S. (not that I would mind if I were in Europe instead when it comes to health care).
As far as ocular issues, I really haven't noticed much, or at least I haven't noticed anything conspicuous enough that I can be confident it isn't just me overanalyzing things. I guess there was one time there was a flickering light at a restaurant that kind of bothered me, and I think I recall sometimes having some kind of mild flashing spots in my vision when I first move into brighter lighting conditions than where I had been (such as going outside on a sunny day), but these seem pretty subtle even if I'm not imagining things and may have no significance. I haven't really noticed a difficulty focusing visually, but I might've just never separated it from the difficulty focusing mentally. I would say that when I'm "zoning out" I have to keep trying to stop myself from staring off into space if that's what you mean.
As for meds and supplements, they've been changed around quite a bit since this all started. When this all started, I had been on Prozac (fluoxetine) and Vyvanse, which is a stimulant because I'm something resembling adult ADHD, for over a year at least. I say "something resembling adult ADHD" because I was diagnosed ADHD as a kid but barely fell short of criteria when I was tested again at an older age. I also don't seem to have the hyperactivity or impulsivity anymore, though I do have some attentional issues at times (even then, it's not normally nearly as bad as it's been since symptoms started). I did ask my psychiatrist if he thought my symptoms could be side effects early on, and I was told it was extremely unlikely, especially since I'd been on them for so long. I started on a probiotic about when my symptoms began because I was also having stomachaches, and those went away, unlike everything else. Once I learned my vitamin D was low, I was prescribed a high dosage prescription form of vitamin D to take weekly for a few weeks, and I've been taking a simple over-the-counter vitamin D supplement since getting done with the prescription one. There've also been a few medications I tried without success and tweaks made with my psychiatrist since then. I was given a week of prednizone (don't recall why) and it didn't do anything helpful (the first time I noticed my face feeling hot was when on that, but it continued afterward). In 2012 I had had some similar symptoms including dizziness that I don't recall very well anymore. At the time, I had been diagnosed with Meniere's Disease (don't know if it was the right diagnosis) and my symptoms went away after I was prescribed a diuretic for it and started trying to cut back on sodium. Therefore, due to past events, I initially suspected my symptoms could be Meniere's Disease brought on by allergies (which I think I've ruled out since then). Because of this, I was taking that same diuretic and antihistimines for a while before going off of them because they didn't help this time. Also, I eventually got my dose of Vyvanse bumped up a little and switched from Prozac (fluoxetine) to Welbutrin (bupropion), but neither change seems to have helped noticeably. And finally, just this past Thursday when I saw my psychiatrist again he put me on Cymbalta (duloxetine) in addition to the Welbutrin and Vyvanse. I've had the hardest time sleeping both nights since I started taking it, though, so if that doesn't stop happening pretty soon we'll have to change my meds again. And through all of these med changes I really haven't noticed a consistent change in my symptoms beyond the usual fluctuations.
As for vestibular migraines, I considered the possibility myself, too, but certain things about it don't seem to fit. For one, I was told it should've showed up on the MRI if that were what it was. I did also ask about the possibility of an EEG because my mom claims that's how they discovered her (non-vestibular) migraines, but I was told it wasn't a good test for vestibular migraines, so I gave that up. Apart from that, the headaches are typically one of the less frequent or less bothersome symptoms, and the other symptoms often occur without them. I'd expect vestibular migraines would also be more episodic in nature than what I've experienced. I still wouldn't rule it out completely, but it still seems quite iffy to me.
Anyway, I still don't have a diagnosis for it or any suggested treatments other than what I already mentioned, but I forgot to mention that the neurologist seems to think that I have a problem with proprioception rather than a problem with my inner ears themselves.
henryroth SLJoosten
Posted
I find it interesting that a dieuretic ceased your symtoms. I would focus on what has changed since then till now.
In regards to the MRI and EEG, I've had both done and came back completely normal, but they still believe here is migranious activity that is indiscernable through testing.
What doctors have you been too. What state do you live in
SLJoosten henryroth
Posted
Well, the problem with comparing my symptoms in 2012 with my current ones is that I remember nearly none of the details about what they were like back then. It didn't last nearly as long back then, and if I try too hard to remember I may just end up confabulating. I'm pretty sure I had some form of dizziness then, although I think it was less frequent, less severe, or both. I also think I had some kind of headache or congestion in my ears at that time. I also remember at the time that there was one occasion where I felt some kind of shortness of breath in the shower due to the heat and had to step out of the shower to recover and catch my breath, but our shower at the time didn't leave much space for hot air and water vapor to escape, so it may have just been too much steam collecting in there with me (I've always taken way too long in the shower, usually 30 minutes to an hour). In any case, while I'm still uncertain if Meniere's was the right diagnosis, especially since I had a VNG that came back normal then, as well (which it shouldn't with Meniere's), my symptoms did in fact go away after taking the diuretic (which was to get sodium out of my system in my urine) and cutting back on sodium, so either it was something that would also respond to less sodium in my system or it was just a coincidence that it happened to go away when it did. Either way, comparing to back then doesn't seem especially helpful since my memory of it is so limited and I don't know if it's even applicable to my symptoms now.
As for the state and doctors questions, I don't want to get too detailed with the information I give on a public forum or give doctors' names unless it's absolutely necessary, but I am okay with saying that I live in Wisconsin. As for the specialties of doctors that I've seen, I think you can infer most of them from my first post.
henryroth SLJoosten
Posted
SLJoosten henryroth
Posted
I don't mean to sound paranoid, but, even if it is in a private message, why do you need such detailed information from me as doctors' names or the specific area of the state where I live? Even if it turns out to be nothing to be concerned about, it comes across as suspicious for someone I don't know on the Internet to ask for details like that. If you haven't lived nearby and aren't a doctor yourself, you wouldn't know any of the doctors even if I mentioned them, nor would you know of people near me to suggest, right?
In other words, before I tell you, I'd like to know why you want to know and/or what you intend to do with that information to make sure you're not just planning to stalk me or something. I don't seriously think it's likely that you are, but it pays to be cautious with identifying information on the Internet. It's totally fine if you want to explain in a private message yourself, by the way.
SLJoosten
Posted
I've read a few things since my original post that I figured were worth mentioning. Specifically, I looked at a website with more information on Persistent Postural-Perceptual Dizziness and related disorders (http://www.neurosymptoms.org/#/dizziness/4533197313) that was linked to in another discussion by someone with similar symptoms. I also saw a term/disorder I hadn't heard of called Migraine-Associated Vertigo mentioned in yet another discussion, so I googled it and read some of the information about it on another website (http://emedicine.medscape.com/article/884136-overview). As a result, I now find myself thinking that either PPPD or Migraine-Associated Vertigo (perhaps even one brought on by the other with the two blending together) would be feasible as explanations, but each has its own inconsistencies. As it happens, this is nearly the same as what the neurootologist said at the end of my appointment (he said vestibular migraines rather than Migraine-Associated Vertigo, but otherwise those were the same two causes/diagnoses he mentioned as possibilities).
Migraine-Associated Vertigo seems to fit my symptoms relatively well with a few exceptions. The sensitivity to light and sound and ocular symptoms that I've noticed has been relatively minimal if not absent (although I now recall that I was sound sensitive during my symptoms in 2012, too), and, more importantly, my dizziness does not seem to be vertigo, as I don't get the impression of the world around me moving (and I haven't felt unsafe driving with it provided I can adequately focus at that moment). However, other parts of the description fit me almost like a glove. As the site mentions, "throbbing" is exactly the word I would use to describe my headaches when I have them, and some of the indicators seem to fit me almost too perfectly. Both my mom and my sister suffer from migraines, and in my mom's case she has migraines without the headache (which may relate to the perceived mildness of the headaches I've been having). Even more telling is that Migraine-Associated Vertigo, like Meniere's Disease, is associated with unilateral sensorineural hearing loss at low frequencies especially. My hearing loss was one of the big reasons for suspecting I had Meniere's in 2012, so this is noteworthy. The key difference between it and Meniere's Disease seems to be that with Meniere's the hearing loss worsens over time but with MAV it tends to remain stable. I hadn't been aware of this distinction, and, now that I am, I'm left to wonder why my ENT suspected Meniere's instead. As far as I can recall, my hearing loss has been more or less consistent since we discovered it in 2nd or 3rd grade, so either I'm recalling it incorrectly or my ENT was not paying attention to that distinction.
However, PPPD seems to fit me relatively well, too. I do have a history of anxiety (though it was relatively manageable at the time symptoms started). I also have symptoms like a faint, "floating" sort of dizziness (in fact, when symptoms began I was concerned I might faint in the middle of work, though it's become clear over time that I only feel faint), "spacing out" or dissociating, fatigue, difficulty concentrating, and so on. PPPD also seems to have some association with Irritable Bowel Syndrome, which is what I was diagnosed with due to the stomachaches that started around the same time as my other symptoms. The main inconsistencies with PPPD are two things that seem to be absent: an illness or stressful event that might've brought it on and a sensitivity to complex visual stimuli when grocery shopping, reading, using a computer, etc. Regarding that second one, I'm on my computer quite a bit and had been going to tech school for a programming-focused degree when my symptoms began, so I would be pretty much screwed if computer screens were a problem.
It's also possible that I might have or have once had both Migraine-Associated Vertigo and Persistent Postural-Perceptual Dizziness with one leading to the other. After all, that may solve the problem of no triggering illness/event if it was MAV followed by PPPD, and people with PPPD can later develop migraines, making the reverse possible, as well.
Anyway, that's WAY more than enough hypothesizing for now.
SLJoosten
Posted
I don't know if anyone is actually reading this anymore given all the walls of text that I've posted already, but I feel like I should at least follow up and say that, since my last post, I've done a good deal of reading up on Migraine-Associated Vertigo and migraines in general on the Internet, and I've come to the conclusion that chronic migraines of an unusual nature are the best explanation for my symptoms. I'm not sure if they qualify as vestibular migraines since my dizziness doesn't seem to be vertigo and I'm unsure if my vestibular system is involved, but some form of migraine just seems to make more sense than any other potential explanation I've considered before now.
The thing that made me overlook vestibular migraines as an explanation before now was the fact that I really don't seem to fit with the typical symptoms that are most strongly associated with it. My dizziness doesn't seem to be vertigo, my headaches are often mild and inconspicuous (although the one I had yesterday was awfully bothersome and lasted from the night before until late last night), and I've only noticed a very slight amount of light and sound sensitivity or visual abnormalities. I don't seem to experience nausea (although that may have just gone away with the stomachaches after I started taking the probiotic). I also can't really tell when a migraine is coming or even be sure when I'm having one due to the headaches not always being noticeable and having no real visual warning signs. For these reasons, I'm far from the typical pattern of symptoms one expects in a migraine sufferer.
However, I've slowly been concluding as I read more information on them that migraines are actually a mysterious, unpredictable, and highly varied condition that can cause a wide range of symptoms to virtually every system in the body. When I turn my thinking around and look at how the diagnosis fits my symptoms instead of how my symptoms fit the diagnosis, the pieces suddenly start fitting together very well. Unlike PPPD, chronic migraines can potentially explain every single symptom I've had, even the weird or barely noticeable ones. My family history and the nature of my hearing impairment also fit with migraines as an explanation, and my mom rarely has headaches with her migraines, so it's entirely possible that my mild headaches are another case of silent (or almost silent) migraines. The fact that my dizziness fluctuates and most of my other symptoms come and go would also be consistent with migraines, since symptoms would vary depending on whether I'm having a migraine or are between attacks, as well as varying from one attack to the next. Dizziness can often occur between attacks even if it isn't vertigo, and in my particular case it would be very difficult to distinguish between the different phases of a migraine when the headaches are not always conspicuous and I don't have any obvious visual or auditory indicators.
Anyway, even if it's not a typical pattern of symptoms for migraines, I find it hard to believe that it could be coincidental for chronic migraines to fit with and potentially explain every single strange symptom I've had as well as their fluctuating nature. Therefore, I'm feeling more convinced than I've ever been before that that's what my symptoms are. I have an appointment with the neurologist I've been seeing on the 20th, so I'm hoping I can convince him that my symptoms are caused by chronic migraines, too. That way, hopefully he can prescribe me something for them and suggest other ways to treat them or reduce their frequency and severity. I just hope he'll be convinced in spite of my highly unusual presentation of symptoms. Wish me luck!
Hayhue SLJoosten
Posted
I've been here a while now and one of the things a lot of MAV (migraine associated vertigo) sufferers will tell you is that one way to diagnose migraines is by taking migraine medication.
If it works, that's what it was. If it doesn't, then you're back to where you were.
Also, it doesn't have to be vertigo to be associated with migraines: it can be off balance/dizziness. To each his own, basically.
I, myself, have trouble convincing my neurotologist or neurologist of my possibility with migraines even though I have ocular migraines (flash of light) and visual disturbances that I've never had before until 2015 after dealing with an idiopathic vestibular disorder for the last 13 years. Oddly enough, I was finally diagnosed last summer with atypical Ménière's Disease.
Could it be migraines instead? Possibly. But if you figure out a way to convince your doctors that migraines is what it actually may be, please let me know. I'll have to try your tactic.
SLJoosten Hayhue
Posted
When you say "migraine medication," do you mean short-term medications that you take when a migraine is coming on or during one to stop the attack or long-term preventative medications you take every day to reduce the frequency and/or severity of attacks? Or maybe you mean both/either?
In any case, I think the short-term variety of medications would be difficult for me because, with only mild headaches and very few ocular symptoms, I really can't even identify when each attack begins and ends a lot of the time or whether I'm in predrome, attack, or postdrome at a given moment.
I think the daily preventative kinds of medications may have more potential in my particular case, though. Many of the medications that are often used on a daily basis to reduce migraines, such as beta blockers and tricyclic antidepressants, also have benefits for anxiety (which, as I've said, has been an ongoing issue for me). The potential for killing two birds with one stone seems to make them well worth giving a try.
In fact, I think my symptoms in 2012 may easily have been migraine-related, as well, and I can think of a few reasons why the treatment approach we took thinking it was Meniere's would also have helped with migraines. First of all, I was on a diazide diuretic, which, while sometimes used for Meniere's, are usually used to control blood pressure. As it happens, blood pressure medications are often prescribed for migraines, as well (although beta blockers are generally used rather than diuretics), and I think I recall seeing a discussion on the migraine board involving someone's migraines improving with a diuretic. Also, one of the main ways that I cut down on sodium was by going cold turkey on all the canned soups and chilis I used to eat. Many of these also contain MSG, which can be a trigger food for migraines.
Anyway, my plan with the neurologist is basically to make the argument that, when you look at how the diagnosis fits my symptoms rather than the other way around, it seems to potentially explain every single symptom (and fit with my hearing impairment, family history, and fluctuating symptoms), and that would be difficult to do purely by coincidence. I might even make notes for myself before going into the appointment if I feel like it would help. I guess we'll see.
SLJoosten Hayhue
Posted
When you say "migraine medication," do you mean short-term medications that you take when a migraine is coming on or during one to stop the attack or long-term preventative medications you take every day to reduce the frequency and/or severity of attacks? Or maybe you mean both/either?
In any case, I think the short-term variety of medications would be difficult for me because, with only mild headaches and very few ocular symptoms, I really can't even identify when each attack begins and ends a lot of the time or whether I'm in predrome, attack, or postdrome at a given moment.
I think the daily preventative kinds of medications may have more potential in my particular case, though. Many of the medications that are often used on a daily basis to reduce migraines, such as beta blockers and tricyclic antidepressants, also have benefits for anxiety (which, as I've said, has been an ongoing issue for me). The potential for killing two birds with one stone seems to make them well worth giving a try.
In fact, I think my symptoms in 2012 may easily have been migraine-related, as well, and I can think of a few reasons why the treatment approach we took thinking it was Meniere's would also have helped with migraines. First of all, I was on a diazide diuretic, which, while sometimes used for Meniere's, are usually used to control blood pressure. As it happens, blood pressure medications are often prescribed for migraines, as well (although beta blockers are generally used rather than diuretics), and I think I recall seeing a discussion on the migraine board involving someone's migraines improving with a diuretic. Also, one of the main ways that I cut down on sodium was by going cold turkey on all the canned soups and chilis I used to eat. Many of these also contain MSG, which can be a trigger food for migraines.
Anyway, my plan with the neurologist is basically to make the argument that, when you look at how the diagnosis fits my symptoms rather than the other way around, it seems to potentially explain every single symptom (and fit with my hearing impairment, family history, and fluctuating symptoms), and that would be difficult to do purely by coincidence. I might even make notes for myself before going into the appointment if I feel like it would help. I guess we'll see.
SLJoosten
Posted
It seems that last reply got posted twice due to an error in posting. I'd delete the duplicate, but I don't seem to be able to. Sorry about that!
margaret22116 SLJoosten
Posted
Hi. Just read over your post again and something very interesting jumped out at me. You mentiomed something about flushin in your face at some point can't seem to find it now though but yhere is a lot on here. Am I wrong? If not do you still get that symptom?
SLJoosten margaret22116
Posted
Yes, I did mention my face feeling hot sometimes, usually when I'm in bed for some reason. I do still get a bit of that sometimes, but it doesn't happen that often and doesn't bother me that much when it does. It's more weird to me than anything. It's a very similar to a feeling I got when I was on prednisone for a week or so, but it continued afterward. I was only on a low dosage of prednisone, I think, and I was eased off of it, so I don't think the prednisone is the culprit for that.
margaret22116 SLJoosten
Posted