A whole year of imbalance and uncertainty

New here, let me introduce myself 🤝
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Hi, guys,

I’m new to this forum and I spent a considerable amount of time reading topics here before I finally made up my mind and decided to post about my problem, because I saw so much support from everyone.

So I’d like to tell you about my symptoms and would appreciate if anyone comes forward with any ideas as to what the reason for this living hell could be.

A year ago I went hiking and took a mountain lift to shorten some of the hiking distance (I know, lazy, right?). I’ve had a considerable fear of heights ever since I was a grown person, and the lift had no roof over my head, with feet dangling and at times, it was pretty high, so I panicked a lot at the time, but I had to endure it when both climbing and descending.

A week later, after going home from work, I suddenly experienced my first sway/falling sensation. Ever since that first sway, during each step I take, I feel a sudden, very short (~1sec) sway/falling sensation, like a sudden descend or ascend, or like stepping in a hole and being drawn forward/backwards. Now that symptom is very common, however, I am able to provoke the same feeling when making circles with my torso, or when simulating some quick vibrations and movements up and down with my body even when sitting/lying down. As much as I shake my head, however, no such feeling manifests.

From that moment on, I started monitoring myself on a daily basis for these symptoms, as they are extremely unpleasant and prevent me from living my life as I did before - training and walking require almost 100% of my concentration, as for each step it’s uncertain what feeling I’ll get, which direction I’ll feel pulled towards and this really makes me very depressed and incomplete.

I’ve done all kinds of MRIs - from head to torso, visited several neurologists and otoneurologists, tried several medications (Betaserc, Azalonum, Cavinton Forte, Ginkgo Biloba) and Vestibular Therapy, done EEG, EMG, even polysomnography and multiple blood tests and hormones - nothing comes up EXCEPT a possible vestibular paroxysmia due to a very slight compression of my eighth cranial nerve by an AICA, my otoneurologist even told me it’s not actually compressed, but passing really close by. I’m currently treating this possible paroxysmia with lacosamide and so far, after 2 months and daily doses of 100mg the first month and 150mg the second, I’m not sure I see some progress with my symptoms.

Does anyone have any experience with similar symptoms? I would very much appreciate if we can share what we’re going through with each other and support ourselves! I’ll be looking forward to your responses!

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Welcome Marto

We can’t diagnose here, but we can theorise. I wonder in your case if anxiety/stress kicked this off, perhaps your experience in the mountains?

Your symptoms will be pretty familiar to many on this site. Feelings of fake movement are very common.

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I have a TERRIBLE time with elevators (and also have a fear of heights.) Sometimes when i look up at a building, i also get very dizzy. Always had that. It feels biological to me rather than psychological.

I was told my elevator issue was a variant of Mal de Debarquement Syndrome, which is a variant of migraine vertigo where people getting off boats still feel like they’re floating for days afterwards.

I’ve tried a lot of drugs and Amitriptyline has been most helpful, with tiny amounts of klonopin for flare ups.

Good luck!

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Hi, shazam, and thanks for responding!

I’ve come across Mal de Debarquement, but I’ve heard that standing completely still and feeling the floating sensation is typical for it, and my floating starts only when I start moving, move my torso or switch feet.

By the way, I also have TMJ disorder, I was diagnosed recently, and I just found out that it can cause the “floating” sensation. I’ll consult with my dentist on this matter.

Thanks for your suggestion!

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I’ve got a fear of heights as well since childhood. Also as I’ve got older I’ve noticed I’m really hesitant getting onto escalators for some reason, downwards ones. I lived in London as a Uni student, took the tube and those massive escalators daily and never batted an eyelid.

But when I went back several years later my fear of heights and feeling unsteady on escalators had kicked in big time. Making it a miserable, anxious trip. I’ve sometimes wondered if fear of heights is linked to MAV in anyway.

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Thank you for sharing! I do hope you can get better and this passes with time.
I never had a particular problem with escalators, boats etc., I am hoping that my problem also gets better with time… What’s scary is the actual lack of diagnosis or improvement and this is driving me crazy. I also haven’t experienced any headaches and such, which is typical for MAV I think…

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Its an odd syndrome. I have a fear of heights but love flying, even went gliding a few times. MAV seems to be strongly linked with motion or travel sickness but I’ve never had either. I’ve always been an excellent traveller. I get what you mean about the frustration about the diagnosis. Unless you know what you’re dealing with you cant look at effective treatments. You can definitely drive yourself crazy.

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That doesn’t mean always…

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The other things is, I don’t actually have attacks, i.e. as long as I start moving my waist/walking, I immediately feel the swaying and pulls. I don’t have symptom-free days, which I think is key here. I feel a bit more stable in the morning, but that stability wears off two or three hours into the day.
I start suspecting PPPD…

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You don’t have to have attacks for it to be migraine… think of migraine as altered state phenomena. It’s even been implicated as a prime source of IBS… but it just so happens the most common varieties are episodic headache…

Of course, that doesn’t mean your issues are migraine related at all…

pppd is a bit of a catch-all diagnosis, but it seems to me that although it gets thrown about as an almost psychiatric condition it’s intention is actually to describe the situation whereby someone has some kind of vestibular dysfunction but their brain never appropriately adapts to that injury (central compensation), often because the brain habituises the wrong strategy, and compensation is slowed or stopped by panic/anxiety… this was well documented before the term pppd was ever introduced. So in theory address panic/anxiety (cbt/meds), and address the physical (vrt) and it’s sorted…

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I’m sorry to hear about your situation Marto. It appears that you are under the care of a nuerotologist
which is a very good place to start. I had consulted the same type of doctor who diagnosed me not with Meniere’s Disease as my ENT doctor had but instead with Vestibular Migraine. Now I am under the care of a nuerologist who specializes in the treatment of Migraine disorders. My symptoms are much improved with the use of an antinflammatory diet, occasional use of sumatriptan tabs, avoidance of caffiene, good quality sleep, and avoidance of stress as much as possible.
Please see my prior posts on this site for further explanations if you wish, good luck.

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Thanks, JumbledJim, for the detailed response and elaboration.

Since I live in Eastern Europe, here doctors use different terms for PPPD, but basically offer the same course of treatment and also offer the same strategies to cope with this condition. I was lucky enough to consult with a Neurology professor and a neurologist who specializes in clinical research, and they both think that my dizziness is psychogenic, so I’m thinking of trying an SSRI, I was already precribed Duloxetine. I was wondering if I could offer some insight on more appropriate SSRIs for this condition, if any.

I hope you have great holidays!

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Thanks for the response, Explorer!

I was under the care of both neurologists and neurootologists, so I think I’m in the right hands, it’s just that my symptoms are kind of vague and we had to undergo quite a lot of tests and meds to figure out what the problem is. The last thing we tried was an antiepileptic due to a possible Vestibular Paroxysmia, but I’ve been taking it for three months and it didn’t make things better, maybe it made them even worse.
That’s why I think I’m heading towards PPPD and thus, an SSRI.

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I have seen Sertraline touted as the best SSRI for PPPD. But also Effexor, an SNRI is recommended as well.

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This is how i feel also… I feel pretty good in the mornings but as the day goes on my symptoms feel worse… is there any meds that worked for you? My neuro/oto currently does not want me on anymore meds. He thinks I will gradually heal over time.

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Venlafaxine is the standard SSRI for VM and many MDs first choice in meds overall.