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Possible PPPD, but with vertigo/disequilibrium worsened by limb movement

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Joined: 9 months ago
Posts: 6
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So I've been down numerous medical rabbit holes since April/May this year (2020) when I first started experiencing this weird rocking/swaying/falling/bobbing sensation (like being on a boat), and I was hoping someone else had experienced similar symptoms to hear their story. Other symptoms:

  • Intense brain fog, especially when spending lots of time on the computer.
  • Intense eye strain when the brain fog hits.
  • The rocking/swaying/falling sensations would go away when lying down and being totally still for a while, but then would get intense when I moved my legs even just a little. Sometimes it could be triggered by pressing on the muscles at the base of my skull, but this was unpredictable.
  • Increased anxiety over my symptoms.
  • Within a week of the vertigo/disequilibrium starting, I started getting pins and needles and numbness into my arms at night, which woke me up every 2 hours. I suspect this was from neck tension from the anxiety and my brain trying to stabilize my head from the illusory motion throughout the day, because taking some muscle relaxants before bed immediately resolved the pins and needles.
  • The only objective way of demonstrating that I had a problem to my doctors was to do a Romberg test for them, where the moment I'd close my eyes I'd be rocking and swaying and almost falling over.
  • Occasional short-lived, but intense, headaches upon standing up quickly. Sometimes these result in a feeling of light-headedness for a little while.

My family doctor told me at the time it was most likely cervicogenic vertigo and recommended physiotherapy for my neck, and I went for about 20 sessions of physio with no improvement at all.

Testing I've had this year:

  • A brain/C-spine MRI in July 2020 (normal; incidental finding of small bilateral Tarlov cysts in my C-spine, but they say these are usually irrelevant and asymptomatic)
  • Tons of blood tests (e.g. testing for inflammation, B12 levels, signs of autoimmune diseases, etc.; all totally normal)
  • Heart tests (ECG, echocardiogram and 72-hour Holter monitor; all normal)
  • Carotid artery ultrasound (normal)
  • Auditory/vestibular testing - this is the only abnormal result, where the tests showed signs of "left-sided superior vestibular nerve/utricle dysfunction". My hearing's totally fine fortunately. This last set of tests happened in August 2020.

My ENT specialist said that this could've been caused by a viral illness that attacked that nerve, but this doesn't really add up to me because I wasn't sick when this happened, and the vertigo sensations seemed subtle in the beginning (my understanding of virus-induced vestibular neuropathy is that, when it comes on, it's really intense, but mine wasn't at all).

After my testing, it lessened my anxiety significantly and by about September/October I didn't notice any more of my symptoms. They may have transiently occurred but it seemed like I was totally fine again and had a really good month or two. I could concentrate on work again and felt really productive.

Then, around early November 2020 sometime, I think I was on the verge of a panic attack (my partner was told that week she would most likely lose her job due to a COVID-related restructuring at her company, and we're relatively new immigrants without any close family nearby), and within the week after that my symptoms came back.

I then went to see my ENT specialist again and he seemed perplexed by my symptoms. He said it's possible that I have PPPD and prescribed a low dose of Venlafaxine to try out, but I haven't tried it yet due to the potential side effects and wanted to exhaust all the more conservative options first before trying it out.

So I recently restarted vestibular rehab with another vestibular physiotherapist, and have been doing all the exercises and have been improving on all measures (gaze stability, balance exercises), but my symptoms seem to be getting more intense over time. They now seem to be present when lying down at night, which is new. I also now get this rocking/swaying/falling sensation even when I move my arms while lying down, and sometimes even when I take deep breaths.

Could this possibly be PPPD? Has anyone else ever experienced this feeling of increased rocking/swaying/falling when moving their body?

If I do have PPPD, from my reading of the BMJ article on PPPD ("Persistent postural-perceptual dizziness (PPPD): a common, characteristic and treatable cause of chronic dizziness", Popkirov, Staab and Stone, 2018), Figure 2 really resonates with me. I get this sense that my regular physiotherapy sessions earlier this year, where my physio kept prompting me to pay careful attention to which bodily movements trigger the vertigo/disequilibrium, along with my anxiety over my symptoms, have actually intensified the symptoms and made things worse.

Still, I don't understand what could've caused my superior vestibular nerve/utricle dysfunction. One of my theories is that it could be related to increased CSF pressure (long story as to why I think this), but it remains a mystery to me. One of my concerns is that whatever underlying process caused it is still ongoing, and I don't know whether or how to proceed with any further medical investigations.

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Ms. Cynthia Ryan MBA
VeDA Staff
Joined: 8 months ago
Posts: 46

There are many potential causes of dizziness, some of which come on suddenly, while others are more gradual. Treating your anxiety can help in a number of ways, regardless of whether you have PPPD or another vestibular disorder.


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Joined: 9 months ago
Posts: 6
Topic starter  

Thanks for your response Cynthia! Yes, I've read up quite a bit about PPPD now, and it's starting to look like I don't actually have PPPD. Or that there's perhaps an underlying process that's still ongoing that's affecting my vestibular system (e.g. increased CSF pressure).

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Joined: 5 months ago
Posts: 2

I'm new on the forum and am responding to THANE...there was no place to reply after reading all the info you provided.  I have been "dizzy" and walk like I feel I've had more than enough to drink except I don't do drugs OR drink.  I've been to every doctor, had MRI, CT Scan and accidentally read on YouTube a story by Alicia Wolf who wrote "The Dizzy Cook" cookbook.  She has VESTIBULAR MIGRAINES and she started me on a quest.  Soon thereafter I sent a nasty note to the ENT doctor who flipped me down, flipped me back up and told me the Epley maneuver didn't work.  I told her in plain ENGLISH that when people come in with my symptoms I was wondering WHY she didn't after the MRI, send them to a specialist to figure out what was wrong.  She didn't write back until I really pressured her I wanted help and she needed to move forward with this.  I immediately got a referral to Dr. Sweeney at Baylor (here in Houston).  After he and another physician examined me, he told me I did NOT have vertigo and wanted me to go to a neurologist to see if I had Vestibular Migraines.  He also wanted me to go through some tests and to my surprise since I'd been looking for this special "chair" I'd read about, put me ON that Rotator Chair with other tests and I was told I had a Vestibular problem but again, NO VERTIGO.

His physical therapist explained to me that both my ears had a problem communicating with my brain and that I did NOT have a dizzy problem but instead a BALANCE problem.  Apparently the part of the brain that deals with balance for some reason is miscommunicating with my ears and has now, hypothetically FALLEN ASLEEP forever. 

So.  What we do is this.  Work with a physical therapist to RETRAIN a new section of the brain to take on the responsibility of the now sleeping part.

The exercises must be done slowly so the brain doesn't get confused.

In the meantime I did go to see a 3rd neurologist who like the first 2 told me there was NO SUCH THING as VESTIBULAR MIGRAINES because I didn't have a headache.  THEY ALL ARE WRONG.

THere is a much younger doctor, Shin C.. Beh who did a video WITH Alicia Wolf on the subject AND he has a book out called:  Victory Over Vestibular Migraine, which not only proves to ME I have this problem, but is filled with a lot of answers to many people's questions.

In the meantime, I'm working on the exercises...and also since I get very dizzy shortly after I eat, WHICH IS A SYMPTOM OF VESTIBULAR MIGRAINES, I am changing the way I eat.

I have started to juice....will be taking the vitamins Dr. Beh explains about in his book...have been paying very close attention to the food that makes me quickly dizzy like breads, rice, baked or any kind of potato, anything ANYTHING with sugar or a HINT of sugar, cereals, probably more but that's what affects ME.

The worst part are the doctors who pretend they know it all yet know nothing and are bound by the monster American Medical it is and has to be UP TO US to do a lot of research instead of feeling sorry for ourselves.

I decided a long time ago I wasn't giving in to these symptoms and get up each day to what I describe as water sloshing in my head all day and night long and keep on going.  WE are who will come up with the answers NOT THE DOCTORS WHO DRUG US....we don't need drugs so stop being dependent on them...they are nothing but a CRUTCH with a whole lot of side effects.  MY OPINION OF COURSE but I'm just no into taking medication...

Get on YouTube and search for THE DIZZY COOK and if your neurologist tells you because you don't have migraines you don't have Vestibular Migraine because THAT IS NOT TRUE and they are too lazy to do the real research which means, YOU HAVE TO.












Active Member
Joined: 4 months ago
Posts: 5

Hi flourshoppe, your journey into this thing is really interesting. Are you finding your aggressive approach to rehabilitation exercises helping? What kind of progress have you seen and is it super gradual or do you actually notice it the progress?

New Member
Joined: 4 months ago
Posts: 1

I have been going through with the same symptoms but now it is much less and at tolerate level... I was on medication but now not using.. Imbalance all the time the visual kind of thing.. Fast moving things. Rich enviorment and noise sensitivity.. 

New Member
Joined: 2 months ago
Posts: 1

@mactavish83 Thane, are you still there? I have EXACTLY the same symptoms. It's been one year now. I feel terrible. Especially when I'm sitting still or lying, every little movement of one limb, deep breaths or even blinking of the eyes causes extreme dizziness (rocking, swaying, bobbing, spacing out)

New Member
Joined: 1 month ago
Posts: 3

@mactavish83 Thane, couldn't reply to the post directly. I am something similar for the last 4 years. the pressure improved in my ear but it's a bit there occasionally and finally after 1 year and half it improved was nearly normal or pretty much so which was nice. then stress from 2020 affected it. i find diet affects, just be healthy mostly. i had a good hearing too thankfully. blood tests were fine back then. however, getting tingles and nerve pain since the vaccine not back then in my arms and parts of my body to a lesser extent.