I was going to write a different post and earlier but I got a bit sick from my vestibular clinic appointment and it took a few days to recover from that.
Anyway, they came up with a diagnosis. Sort of. It is a diagnosis of exclusion, as in they couldn’t decide where I fit so they put me in this category even though I don’t quite fit in this category either. At this point I really don’t care what they call it as long as they treat it and that they do aim to do. They have me on a waitlist for vestibular rehabilitation for some time in the near future pending pandemic setbacks and delays… so eventually.
The randomly assigned condition is PPPD- Persistent postural-perceptual dizziness
I don’t know if I have this or it was just a sort of convenient place to put me instead of the undiagnosable place they had me before. But I do know If I do, I also have severe vestibular migraines in combination. Because PPPD doesn’t account for enough of the issues I am having. Now they agree I have VM as well but now how it also got significantly worse at the same time when it was being effectively treated. And they can’t account for how PPPD started without an Initiating vestibular ‘event’ or ‘incident’ and just started by itself. Out of the blue. And was non-stop not episodic.
But I can’t explain the gradual onset that happened. How it isn’t really like my vestibular migraines at all. More like this persistent dizziness and my vestibular migraines smooshed together? Even the ‘vertigo’ I had initially almost seems like it was more like maybe I was actually passing out and the world was whirling as my head was falling? And less like spinning vertigo, I get with VM. And with VM it was never constant. Never had this woozy dizziness. Honestly, when this all started I didn’t think ‘Oh, vertigo’. I actually thought maybe blood pressure issues or heart blips. Some weird thing causing brief bursts of severe dizziness and cognitive issues. Up until it got worse and never went away And the more familiar VM symptoms kicked in it really didn’t occur to me this was anything to do with a vestibular issue at all.
Also, a defining feature of PPPD is anxiety which I do not have. I continued to do everything I was doing- including driving- until the symptoms became too severe to function at work and the ENT said I shouldn’t be driving (As in can’t drive at all in the state I was in). But I still continued to do all the things I normally did, paced, of course, since the symptoms exhaust me. And with PPPD they say people avoid situations that aggravate their symptoms. The only thing that stopped me from my normal activities was the damn pandemic. Because I know from chronic pain things like socializing are really good for mental health, so of course, I wouldn’t Avoid them.
But I get how people would get anxiety and avoid certain things with some vestibular disorders- like Meniere’s disease, for example. I sure wouldn’t like having a severe MD attack in public and it might make me think twice about doing it again. But vestibular migraines never bothered me much and never prevented me from doing anything, ever, so even if I had VM at the time of the onset of the dizziness it wouldn’t have been a trigger… and never was for all the time I have had it. I have had bouts of that at work, didn’t bother me any. It was just a new migraine type. It just wasn’t much of an issue. My daily migraine attacks Way more of an Issue for working. My VM just wasn’t severe enough prior to the onset of the constant symptoms to ever cause issues. When it did become constant it is not so much anxiety or avoidance as much as completely unable to do things that were actually the problem I had. And without medication, I still have that problem. I have serious functionality problems.
people with PPPD often become anxious about losing their balance or falling. They may avoid situations that make their symptoms worse, to the point where it can start to interfere with their lives.Balance & Dizziness Canada
That may be true for most people with PPPD but maybe not all. I find doctors like to make these assumptions. But I’m chronically ill and I have been coping with that most of my life. I do not avoid things that may or may not make me worse or I’d have no damn life at all. If I have it it doesn’t apply to me. I do not avoid things, I adapt to things. I do not have anxiety about falling. I Do fall. So that sucks. I fell down the stairs which was quite the ride and messed up my shoulder but I still go down the stairs. I have fallen in the bathroom. I have fallen into furniture. Into walls. Almost right on my face a few times. It doesn’t give me anxiety but Also doesn’t actually stop me from falling. Only medication stopped that.
It interferes with my life substantially in the sense I am so damn tired. I am constantly off balance. I can’t focus. Everything exhausts me. So doing things means really, really pacing things. So that is what I do. I pace things. Prior to the pandemic, I didn’t avoid any situation I would normally go into. I value my social time immensely. I adapted- I stopped drinking alcohol (that makes things substantially worse). I got a cane to help me so I do not fall into things, people, whatnot. The cane Also helps so when I am in line at a store I do not look drunk in public because I can’t walk straight or stand straight.
PPPD can often develop with another vestibular disorder. It seems to be a condition associated with the brain going wonky because of the vestibular dysfunction it is under and then becoming perceptually over sensitive to it. Which makes sense to me. You are assaulted with sensations. I can imagine the brain has a hell of a time adapting to all of that. I can also understand how our nervous system would trigger anxiety from this insane influx of sensations and panic attacks as well. In fact, some vertigo attacks seemed to jack my heart rate up a whole lot so I can see how anxiety would be something of a trigger event in the body. I mean, you try feeling like you are falling abruptly, then not, then falling, then not… repeatedly for no reason. And that is just One type of sensation. I can see how a vestibular condition would lead to PPPD entirely.
Normally, you don’t consciously notice all these different sources of information. The balance system combines them for you in the background, and you can stand, walk or turn your head without needing to think about keeping your balance. But with PPPD, the experience is no longer seamless. You start to notice the different signals, especially if they do not all agree with each other. This can make you feel like you are moving when you are standing still, or like you are about to fall.Balance & Dizziness Canada
Symptoms of PPPD
- Dizziness without vertigo and fluctuating unsteadiness provoked by environmental or social stimuli. (I do also have vertigo, of course. And my balance issues without medication are fairly constant and not dependent on stimuli unless my house during the pandemic is Very Simulating)
- Persistent sensations of rocking or swaying
- Symptoms persistent on more days than not or daily
- Worse with: Sitting upright; standing; head or body motion; exposure to complex motion rick enviroments
- Initiated by a vestibular event (That can be vestibular migraines though but if so I’d had VM since 2009 and no issues with PPPD. It was being treated with Sebelium and I had no VM events at all when this all started… so no initiating ‘event’)
- Fluctuates in intensity depending on triggers (If they mean the dizziness, then no, that is constant. Starts in the morning, gets worse as the day goes on. Regardless. Vertigo fluctuates depending on triggers though but that isn’t a feature of PPPD)
- Symptoms primarily related to posture- severe when walking and standing, less severe when sitting, minor or absent when laying down (And this I agree with. Except it can be pretty severe when sitting. And obviously vertigo and that ‘falling sensation’ do not matter if you are laying down)
Vestibular rehabilitation and SSRIs are the treatment for this
I can’t take SSRIs due to depression/suicide risk factors. But VRT I am all for, regardless of diagnosis, frankly.
VBRT reduces the severity of vestibular symptoms by 60%-80%, resulting in increased mobility and enhanced daily functioning;VEDA
PPPD and severe Vestibular migraine?
So maybe I have this. Maybe I don’t. If I do, I also have pretty severe vestibular migraine which wasn’t the case before all this. Or something is making me very dizzy and that pissed my VM off which could also happen, I suppose.
I do have all the vestibular migraine symptoms smooshed in there as well. And that would confuse the issue. But if so, those are Also really, really frequent now. Like fullness in the ears. Hearing loss with severe ringing. Vertigo bouts. Disequilibrium- severe to mild depending on medication suppressing it. Extreme sensitivity to motion. Severe balance issues. (feel like a pinball in a pinball machine). Anyway, it would indicate that the med managing my VM abruptly stopped working shortly after PPPD started and got severe. And then the VM started and Also got severe and very frequent at the same time. And that means PPPD triggered my VM, not the other way around. And coincidentally the VM medication that had stopped my VM completely stopped working completely and utterly.
Or maybe it is all wrong
Another scenario that is possible is that since it took so very long to get to the vestibular clinic is that whatever caused this cluster fuck of symptoms was never determined because it was never tested at its onset (when I was unmedicated and falling all over the damn place and had presented with nystagmus which I do not now.) And then after a year or two of That plus my usual episodic vestibular migraine attacks I Then developed PPPD, without the anxiety issues.
I wonder if that is the most probable explanation. Because That would have been the ‘initiating event’ for the PPPD… but that initiating event was Never diagnosed and whatever it is, is just underlying all this crap… more hidden than it ever was under medication and other symptoms that were not originally there. And if so, I don’t think that will be diagnosed at all and may not be ‘vestibular’ at all- it may be some other medical condition that causes severe dizziness, that then triggered my VM due to that. And maybe whatever that was is gone. Or not as severe. And all that really matters is that it ticked off my vestibular system.
All I know is that whatever that is made it impossible to function at work and made me extremely fatigued all the time. With profound dizziness. Severe balance issues. And most of my falls, like my wonderful trip down the stairs, were during that time. When I was put on .5 clonazepam 3 times a day I was slightly functional with it. It suppressed it except when it was more severe at night. So if I got up at night and attempt to walk I would rapidly stagger and slam into a wall… that sort of thing. Before I stopped working due to it it made me pretty sick. Trying to function when you can’t led to a lot of vomiting. And an inability to communicate with customers. And a lot of errors I didn’t know I made or recall even making. I would get vertigo and then after severe dizziness where my brain just felt like it shut down. I couldn’t think through it. That state became constant.
And that makes sense my brain being in that state all the time would trigger something like PPPD. Where it no longer understood what it was perceiving anymore and trying to adjust to motion and sensed motion more and more, making it all worse.
So who even knows
So I find the diagnosis limiting at best. Since it fails to explain what initiated it. The fact I don’t fit some of the main criteria at all. And it doesn’t explain how or why my well-managed vestibular migraine attacks apparently also got way worse at the same time this PPPD spontaneously manifested for no reason when I was still on my VM medication. However, that doesn’t mean I don’t think this may be a factor because some of the criteria does fit (like it IS worse standing and sitting and better laying down – aside from the vertigo and the internally repetitive falling sensations). I do really question if this was what started it all though… or if this is something that happened when I wasn’t treated with anything and not investigated for a while and my brain just couldn’t adapt to all of it. And it just ‘jumped on board’ to confuse the issue.
Also confusing the issue is my failed caloric test. Clearly, I bombed that test. Something in the past damaged my left year. But that was a long time ago. And my brain must have adjusted to it. I told them I am pretty sure I know when and how. And if so, my brain has since adapted to that. So that does explain that faulty test. So I do not think any of this is an ear issue. I do think if I do have a vestibular issue and not some other dizziness issue, then it is a brain one.
But I am sick of this crap. And I Want to do vestibular rehabilitation because I feel like no matter what happened and no matter what the cause was- whether they figure it out or not, diagnosed it right or not, VRT is pretty good for all vestibular issues. I want to improve my functionality and quality of life and if that does it- I really couldn’t care less what they call it, frankly. An accurate diagnosis matters, of course. In the sense that if they are missing something VRT might not be that effective. Or an underlying condition may progress. But if it is some vestibular issue I doubt it really matters much because VRT should help with Most of them Anyway. And if it is a vestibular issue plus PPPD same thing. Hopefully, giving me the stability to stop falls. Functionality to have focus all day. And balance. I would love it to heal my brain but I’ll take a massive reduction. Maybe my brain would compensate by itself over time but I know VRT definitely is the way to go to help that along.