31 year old with a 9 year VM/PPPD history

Hello everyone,

Though I’ve never posted here, I’ve been on these forums a lot over the years and reading about all your experiences has greatly helped me both to self-diagnose as well as to see how this issue evolves over time. Let me start with a brief history of my MAV/PPPD experience.

In May 2014, at the age of 22, I’d just finished exams 2 days ago and remember a very WEIRD dizziness hitting me suddenly after dinner. No spinning, but very intense depersonalization/derealization type symptoms which didn’t let up after a couple of days. I was in Canada and went to the GP, was told it was labyrinthitis and would be gone after a couple of weeks. At that point I started researching vestibular disorders online and found this forum as well as Dr Hain’s website. Reading some labyrinthitis/VN forums, it seemed like it wasn’t uncommon for it to take a few months to go away, so I braced myself for a long road despite what the GP told me. The first month, I barely left the house as there was strong 24/7 dizziness (no spinning, but a sense of floating), oscillopsia (visual field constantly vibrates at high frequency), photophobia, phonophobia, eyes had trouble focusing, and a very high pitched tinnitus in my right ear. By the second month, I’d started to push myself to do things (in my mind, I was compensating from the labyrinthitis), and started an office job as a software engineering intern. Though it was a struggle and I’d have days where I felt very out of it, it was doable. I started even playing a bit of tennis, which felt terrible at first but started to get better over time. In fall of 2014, I went back to university. Though I had 24/7 symptoms (oscillopsia, tinnitus, dizziness), they became mild enough to where I started ignoring them and just going on about my life. I had no real impediments from this illness and was able to keep a normal diet, normal schedule, have a high stress job, travel all the time, maintain an intense workout routine, etc. In 2018 I had a brief blip where the symptoms worsened a bit (but I was still able to function normally) for a couple of weeks - at this point I finally saw a neurotologist in NYC who diagnosed me with vestibular migraines. Having been on this site a decent bit, I already suspected this diagnosis when my “labyrinthitis” never fully went away. I started taking magnesium supplements and that seemed to really help. Symptoms reduced again (though still 24/7) and I stopped thinking much about this illness at all.

Then, this past summer, I had my first episode of BPPV. I immediately knew what it was, having spent too much time on Dr Hain’s site over the years, and was able to get it resolved by a professional vestibular PT. However, the BPPV seemed to really kick up my VM symptoms for 4-5 weeks, even after the Epley cured the spinning attacks, and made work somewhat unpleasant, though still doable. The post-BPPV flare-up subsided somewhat, but it seemed my symptoms never went back to their pre-BPPV baseline.

Unfortunately, 4 weeks ago, I came down with an extremely mild case of COVID (second time getting COVID, first time was a non-issue), which seemed to kick my vestibular symptoms into overdrive. I’ve gotten quite bad now and for the first time with VM, afraid to leave my house because it exacerbates my symptoms so much. My symptoms have been 24/7 since 2014, but now just much more intense. I feel a false sense of internal motion a lot of times, can’t handle visual triggers (watching TV, using a computer), and have mild nausea/motion-sickness most of the time. I’ve been off work for the last 2 weeks as I can’t even imagine being on the subway or the office at the moment. It has now been 4 weeks since the VM was triggered and it doesn’t seem to be letting up. I did see 2 neurotologists already and started taking propranolol 60 mg ER last week, but haven’t noticed much difference yet (maybe 5% but not sure if I’m just imaging it). I’m also doing the HYH diet.

So I guess I’m just here looking for words of encouragement and any comments you all might have about my journey. I’m in quite a low place at the moment, because this had become a very manageable issue for me, and yet now I’m worse than I’ve ever been (the intensity of symptoms is also scary). For the first time with VM, I’m wondering whether I’ll be able to continue working, even from home. In the past, with this condition, I was on easy mode and I could do pretty much anything without having a ‘flare’ - eat unlimited junk food, have a very high stress job, travel all the time, drink often, etc. Only drinking to excess, not sleeping enough, and jet lag would make my symptoms worse, and even then only for a day or so (and it was still very very manageable and never disabling). Now, I’m in very poor shape and am really unsure what the future holds for me, especially as I got this illness at a relatively young age. I know that 4 weeks isn’t too long for a flare up, especially after COVID, but I have a tendency to catastrophize, unfortunately.

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Welcome and sorry to hear things have got worse recently but always remember the times when things started to clear again!

Very common I’m afraid and the stress of VM is itself surely an exacerbator?

you’d probably significantly benefit from amitriptyline or nortriptyline. A lot of the neurological effects from COVID are pointing to disruption of the Cholinergic system, which is not only responsible for activity within the brain, but the brain-gut connection through the vagus nerve.

Cholinergic supplements like Alpha-GPC or CDP-Choline are relatively harmless and worth a try.

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Thanks James. Yes, VM is definitely an exacerbator. My main concern is that something fundamental has deteriorated as far as my VM is concerned, i.e. that my baseline has become worse. Unsure whether this is likely or not, and by Occam’s razor I should likely be thinking about it as a simple ‘flare’ which will gradually resolve over a few months back to the original baseline, especially given that I’m taking medication for the first time ever, as well as the HYH diet.

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I guess ami or nor would be the next in line if this propranolol isn’t enough. The citicoline supplementation is a good idea actually - I’ll give it a shot once I’ve given another couple of weeks to the propranolol to actually evaluate it. Doc said if I didn’t notice anything by 3 weeks in, we’ll try something else. I have to say, not sure whether I’m imagining it but I feel maybe 5% better since I started the propranolol 7 days ago. Wonder if that means it’s working?

Propranolol takes a significant period of time to work. The evaluation period is more like 4-8 weeks.

Hi there,

Such bad luck with your flare up.

BPPV is a beast of a thing on its own and loves to stir up trouble with VM. That’s how my story started 3 years ago. I got BPPV twice in 3 months, and literally immediately after the Epley the second time, I was in VM torture, similar to how you describe. Lots of floaty feeling, vision off, (blurry and double), lots of vomiting, incredible head movement intolerance - the works.

BPPV recurs once you have had it once. This is what I am very afraid of as personal experience tells me how it heavily influences a VM nightmare. So, I am super strict on ways to help prevent it.

My best method for you (after reading copious amounts of research) is to up your vitamin D. My neuro said have the levels above 100 (I can’t find this research) but I make sure it is. It does wonders keeping those pesky crystals in place (I’m hoping in the long term).

As for VM - a bigger beast - it really is about finding the medication that best works for you. I started on propranolol first and lasted 3 weeks. Side effects were too much and was actually getting worse. I then went on pizotifen which slowly got me back on track. I’m now on Ajovy.

I would definitely chat to your doctor about medications that seem to be more effective for VM.

Cutting out alcohol and caffeine also helped me a lot. It’s a hard pill to swallow though.

The usual vitamins that I’m sure you’ve read about on here.

The biggest factor though is time. It’s takes a lot of time unfortunately for your brain to get right again.

Although it sends a chill to my core reading about people who have managed this well for a long time suddenly go down hill, it is only a phase that will improve. (You might need to give me the same reminder if it happens to me, I won’t be as calm). I’m pleased to hear you have managed without medication this whole time. Now it’s probably time you found the right one.

Good luck and speedy recovery.

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I am very sorry to hear about your situation. Covid also affected me. I can’t tell it is the reason of my vertiginous migraine, but for sure after Covid I felt something was not right. As others mentioned it will pass. Be patient for at least 1 or 2 months, and you will notice the difference. The medicine that works for me is Nortriptyline (10 mg).

Thanks for the words of encouragement. I’m wondering whether I should’ve tried a drug earlier and I could’ve maybe avoided my current situation, but that’s neither here nor there at this point. Anyway, from what I’ve gathered, flares are to be expected. I just hadn’t had a terrible one yet, since the initial episode.

WRT your particular BPPV story though, have you seen the below from Dr Hain?

Hydrops due to obstruction of inner ear plumbing by loose otoconia

Several authors have pointed out that the plumbing in the inner ear is precarious at best, and that having loose crystals embedded in a gelatinous matrix could plug things up even more. Yamane et al (2014) suggested that Meniere’s disease is sometimes due to blockage of the duct reuniens by saccular debris. Hornibrook (2018), provided more support for this theory.

Again, little is known about this. It seems plausible that one could develop hydrops after BPPV. We have encountered patients who complain of aural fullness together with BPPV, or after BPPV is treated. We have also encountered patients with hydrops on ECOG, after canalith repositioning. Overall, we think that this hydrops is an occasional complication of BPPV treatment.

Just a possible avenue to explore, since this all started after the Epley for you with BPPV. I wonder if some sort of hydrops treatment would help.

In my case, just hopes & prayers that the propranolol will do the job (some distant day in the future, lol)

Or what if BBPV is actually just a neurological phenomenon?

Has BBPV ever been imaged in vivo?

I’ve written up my scepticism on the subject at https://mvertigo.org/t/bppv-or-not-bppv-that-is-the-question/21441?u=turnitaround but access requires a high trust level gained via contribution over time.

I would just caution that much of vestibular science is dogma and hypothesis and there is a long way to go before we have objective proof of any specific aetiology.

Thanks Maria. It’s only been 1 month since my COVID (and VM flare) started, so I’m definitely mentally prepared for it to take a couple more months. One of my doctors prefers nortriptyline, but the other prefers propranolol, so I figured I’d try the propranolol first. So far, not many side effects from propranolol, but no obvious relief either (but it’s only been 2 weeks, and my dose - 60mg extended - may be too low). I’ll give the propranolol as long as I can, probably another 6 weeks, even though amitriptyline/nortriptyline sound pretty tempting, given others’ results with them on this board.

Propranolol doesn’t seem to be very effective around here, but at least for conventional migraines, it seems as close to a home-run drug as you can get. Lots of great reviews here:

I agree with you, but more likely to think of migraine being secondary to a physical issue rather than BPPV being neurological, simply because it is so easy to physically move your head and fix it. I gave myself a canal conversion with my BPPV by doing the self-Epley at home (posterior canal to horizontal canal), and then the physical therapist was able to easily see that it was horizontal canal & treat it with the log roll and the spinning went away completely. That degree of precision in diagnosis and treatment wouldn’t be possible I think if it was a neurological issue.

In my case, while I definitely do accept my diagnosis and am happy to be treated as a migraine patient because we know that’s what works, I can’t help but wonder whether there’s some weird type nerve/vascular issue in the inner ear which is causing the migraine. I have never had a migraine headache in my life (I get tension headaches and hangover headaches like anyone else), nor any sort of clear ‘episode’, ever. No family history of migraines. No obvious dietary triggers, except that alcohol made my dizziness a bit worse (which it does for pretty much everyone!). I just have a history of motion sickness and perpetual, low level (until this recent flare) dizziness, tinnitus & motion sickness which never really got much worse. I was literally riding motorcycles on racetracks and never really lost any athletic/balance ability (though I’d feel very out of it playing tennis or something with lots of head movement). All of that seems like it’s a bit too mild to be VM and looks more like PPPD (insofar as that’s a real disorder, lol).

Anyway, I digress - doctors say it’s VM so I’ll believe them and treat it as such. Just getting my thoughts out because it’s nice to talk to people who have any interest in this stuff, since it’s been so prominent in pretty much my adult life :smile:

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I hear (ahem) you. I’ve made similar arguments myself. But there are big problems with the explanation too. For example, otoconia are kept in a tissue matrix. So what’s with the loose story?

I am very wary of anything which is not backed up by direct imaged evidence.

There is also a recent finding of a pressure valve in the inner ear which might respond to centrifugal forces that occur when doing certain manoeuvres …

When I had to select a medicine, a friend helped me (she is a pharmacist and suffered vertigo from an accident). She only told me to stay away from Topiramate. I selected Nortriptyline and I noticed the improvement since the second day I took it. And the relief increased with the months. To be honest I am never 100 percent ok, and I have relapses. For instance, I got sick with a bad cold after getting the flu vaccine, and it took 2 months to get back to what is my new normal. In my case the bad side effect of Nortriptyline is that my pulse increased. My new normal is high 60s to low 70s when resting, which is ok, but no optimal like it was before. Anyway, no drug is perfect. You will get better, and if Propranolol is not helping, you can try other options.

Maria - For me topiramate has been a life-saver – the only drug I’ve tried that has calmed my brain down enough to live a mostly normal life. Yes, there are side-effects, but every other drug I’ve tried also had side-effects. Unfortunately, finding satisfactory treatments for this awful condition is mostly trial and error, and different for each of us. Good luck as you continue on the road to good health.

Update: had a follow-up with my neurotologist again after 2 weeks, and he seemed happy with my propranolol response - I have low side effects from it so far and I was clear that I couldn’t be sure whether it was helping, though I do feel perhaps 10-20% better some of the time. He upped my dose to 80mg ER and said we should next meet in 6 weeks. Hopeful that he saw something he liked.

Yes you’ve got me thinking. I’ve never explored hydrops as a possible cause. Previous to research just now, have never known primary hydrops is Ménière’s disease.

I do know that I had major ear fullness after the Epley for a long time and never could understand how a migraine could cause that. But I did have blurry and double vision and not sure how an ear issue would cause that.

I kind of have this is mind now as to succession of what went wrong. Bppv ~ secondary hydrops ~ vestibular migraine. Each causing the next. The ear fullness disappeared as I got better.

But this isn’t my post so I’ll stop talking about me.

Glad the appointment was promising. And a 20% improvement ‘sometimes’ is better than no improvement.

What’s your job? Have you returned working from home?

Also, silly question but are you male? No mention of hormones ?

Catastrophizing is so easy to do. I am unfortunately elite as this. So easy to tell someone else to think positively but your posts hint that you’ve accepted it and are confident that you’ll improve - and that’s true!! So here’s to more improvement in the next 6 weeks.

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Yes, I returned to working from home just yesterday. I’m a software engineer here in NYC but I work at a finance firm which is big on in-office work, so I’m not sure how long they’ll accommodate this WFH arrangement. I’m having some trouble, but with small breaks, I’m able to work. I’m much more fortunate than many professionals whose jobs require in-person presence, but on the flip side, looking at small text on multiple computer screens for many hours each day is … literally part of the job description :smile:

As for the second question, yes I’m a guy. I’m not sure what that means for my prognosis, but I think it does simplify migraine management for me, since I don’t have to worry the additional layer of unpredictability that hormone fluctuations introduce.

And on the last point, it is very difficult to grapple mentally with how disabled one can get with this, and I don’t have it figured out any better than anyone else. I’ve had very good luck so far with my course of this thing - though I got it at a very young age, and have had 24/7 symptoms since the age of 22, I’m now 31 and can say that it barely affected my life until just a month ago. I lived out my twenties just like any normal guy and the symptoms didn’t stop me from doing 99% of the things I wanted. ‘Pushing through’ the symptoms became second nature, and that was how I was able to cope! This time, I’m not sure that pushing through won’t make ‘it’ worse, but I don’t even really know that. Yesterday, for example, I was feeling absolutely terrible (dizzy, about to faint, disconnected from reality, etc) on the subway to the Dr’s office, but I forced myself to deal with it, and while I was still quite ‘out of it’ & symptomatic on the way back from the Dr’s, I think my brain had simply resigned itself to the fact that it had to keep me operational, and there was no anxiety, no feeling of being about to faint or puke, etc. I even pushed it and went to a grocery store and simply shopped. Again, was quite symptomatic, and things were moving in my vision, etc, but nothing dramatic happened. That sort of experience leaves one quite confused - does the migraine actually impair my functioning or is it the anxiety? I’ve never actually had any objective deficits in ability while symptomatic - for example, I was in very rough shape when I developed the BPPV, but I was in the middle of a solo motorcycle trip in the desert in Nevada. Somehow, despite having 24/7 symptoms as strong as any I’ve experienced, I was able to ride my motorcycle through the desert, twisty mountain roads, and busy highways back home in a day. Now, it definitely was hellishly unpleasant and I was having a panic attack basically the whole way through, and when I stopped at stop lights, I felt like I’d drop the motorcycle because of how dizzy I felt, but the point is I wasn’t actually able to find any objective deficits with my balance or anything else, and my riding was functionally unchanged from any other time, even though I felt so ‘out of it’ and dizzy & disconnected from reality that I almost stopped right out the gate, thinking I wouldn’t manage. Yet somehow I was able to, and 2 hours into the ride, I actually started to feel better instead of worse!

Point is, this is an extremely strange illness, and in my case, it’s almost like my brain is just throwing a tantrum, and once it realizes that it needs to function nonetheless, it’ll grudgingly ‘turn down’ the migraine a bit and continue functioning. Does that sound completely crazy?

I think the technical term is compensation?

I’ve often wondered if migraine is a the state the brain gets into when compensation is lost significantly.

I’ve wondered if migraine is the state the brain gets into when the learning gaps are high or as an unwanted by-product of the compensation process.

Therefore chronic migraine might be due to always chasing an unstable foundation where the rules of the game keep changing.

That’s why I gave a lot of thought to the possibility that the underlying aetiology was a fluctuating hydrops that was difficult (but not necessarily impossible) to compensate for.

Somatic tinnitus is a great example of a lack of compensation.

This is a can of worms.

the pathogenesis of familial hemiplegic migraine is greatly helpful and foundational to understanding what could be at play in migraine that is not inherited by single-gene deficits