New Member and PPPD/ Vestibular Migraine

[Sparklingsunshine]

Hope you wont mind me joining ? I've been lurking for a while but decided to take the plunge.

Long story so please bear with me. I've never been formally diagnosed with FND but the neurologist I saw about migraines and my ongoing balance symptoms said I had aspects of FND.

I have Fibromyalgia and Ehlers Danlos, a genetic condition which causes joint hypermobility, among many others. I know some with EDS can be prone to clumisiness as having EDS can cause a lack of proprioception, awareness of where you are in space. But I never experienced any difficulties and never had balance issues before.

In April 2022 I had a migraine the day before. I have had migraines with aura since teenage years but they were very sporadic and infrequent. I got diagnosed with hypothyroidism in 2020 and my migraine frequency and intensity massively increased. I probably had more migraines in those two years than I did in my previous 50.

I had a migraine, which was just my normal type. The day day I was walking home and went i to a supermarket. I started to feel off, like my balance was wrong, like walking on a trampoline. It was very unpleasant and disorientating. I hoped it was just the after effects of the migraine.

Sadly though it never went away. I mentioned it to the Neurologist who I was seeing coinidentally for something else. He said it could happen after a migraine but hopefully it would resolve. I tried various treatments from my GP, Betahistine, Stemetil, but got little relief. I asked to see the Neuro again as I wondered if I had vestibular migraine.

This diagnosis was agreed on ( rather too quickly for my liking) I did query PPPD as well but was told the treatment for both was virtually the same, low dose antidepressants. I started on Sertraline but found the side effects pretty unbearable. I then tried all the usual primary care options, Propranolol, Amytriptyline, Nortriptyline. Had to abandon all of them due to side effects.

My GP was in contact with the Neuro who then suggested Candestarten, a BP drug. That didnt work either. By this point I'd asked for an ENT consult to check it wasnt anything like Menieres. I'd also joined a very informative forum for PPPD, VM and other dizziness/ balance issues. Its an international site and in the US, an SNRI called Venlafaxine was being used more and more for these sorts of conditions.

ENT concluded no Menieres, hearing loss, tinnitus etc, suggested PPPD and referred me for some Vestibular Physiotherapy. I knew it would be a long wait so decided to give the Venlafaxine a go. I was on it for nearly 11 months. I started off very low and slow and gradually titrated upto 112.5mg. I tolerated it better than some of the others but it had little effect on my balance issues and the constant nausea was unpleasant.

I decided end of last year that it wasnt helping so came off it very gradually. Summer 2023 the Vestibular Physio contacted me. She's very good but they were phone consults only and therefore rather limited. Vestibular Physio is specialised and provision on NHS is very patchy. There are lots of NHS trusts where its not available. I am in contact with her again and have a follow up call next week.

I guess my issue is that I've been told its VM by one doctor, PPPD by another, the vestibular physio thinks additionally some of it could be cervicogenic dizziness or neck dizziness due to my EDS, which can cause spinal instability in the neck.

Its confusing being told all these different things. I dont feel its really VM as that has quite specific criteria. PPPD usually follows on from either a vestibular condition like labrynthitis or vestibular neuritis, neither of which I had. Neither was I anxious or depressed before hand, another risk factor. I've done a heck of alot of reading these past two years to tryand figure out what's happening.

I dont feel my symptoms really fit anywhere. Currently I'm not on any meds. I am prescribed Clonazepam which does really help with the balance problem, but Benzos arent ideal long term due to addiction concerns so I try to use them sparingly.

Additionally I've done vestibular/ balance exercises,taken antihistamines, tried cutting out caffeine and other lifestyle changes. Even tried CBT to see if I could change my thinking and mind set. I've thrown everything at this.

I just feel like whatever I have has taken over my life and its horrible. I hold my hands up to feeling anxious and depressed now. I've gone from someone who was fit and active to someone who sits around because standing up or moving immediately sets off the trampoline sensation.

Thanks for reading.

[Van604]

Welcome! Although this isn't a group anyone really wants to belong to - FND is no picnic - I have found it very informative and supportive. I thought it was interesting that, like many of us, your problems started, or got worse, in later life. This is something that really isn't given much attention by the medical community. So many of us have led fit, happy and productive lives, until suddenly the wheels fall off. I also had weird balance problems at first - I felt drunk and kept veering off to the left when I tried to walk in a straight line. What seemed to work for me was doing classes with strict patterning of movement, where I could watch the teacher and mirror their movements. I did all sorts of dance classes - the ones for Parkinson's were very useful. Also, I started playing music in my head while walking down the street, and that really helps. FND Hope does some classes online - have you tried those?

[Sparklingsunshine in reply to Van604]

No I havent I think my issue is that I've been told different stuff by different doctors which adds to confusion. I know doctors who deal with FND say that a diagnosis is important as it gives validation and understanding. I currently have 3 and the Neuro only said certain aspects were FND like.

I'm not even sure that I believe in the FND label, seems to me its a dustbin diagnosis for when doctors dont have a clue. I've experienced this as someone with Fibro and I know a lot of people get fobbed off with Chronic Fatigue.

It could be that years down the line they find its actually a physical issue they havent discovered yet. Frankly FND sounds a lot like patient blaming and not far removed from the old " hysteria" label from the 19th century.

[Van604 in reply to Sparklingsunshine]

I completely agree with you. I was initially diagnosed - by two neurologists including a movement disorders specialist - with either Parkinson's or dystonia. I was on Parkinson's drugs for two years. A student doctor then diagnosed me with FND and it stuck. No idea why. I then had a nightmare two years under the "care" of a Freudian neuropsych who tried to convince me it was all in my head. So I ditched him and now I just do my own thing. I know that this is a physical thing and no one can convince me otherwise!

[Sparklingsunshine in reply to Van604]

MS used to be known as the " hysterical" disease, before they invented MRI and discovered its an autoimmune disease that attacks the myelin sheath on the spinal cord.

I wish doctors would just admit there is a lot they dont know, rather than coming up with silly labels like FND, CFS, IBS and other word salad. I swear they sit there with Scrabble tiles trying to invent the latest medical acronym.

There is nothing wrong with admitting you dont know, but a lot of doctors lack the humility to admit it and resort to patient blaming and gaslighting.

[Van604 in reply to Sparklingsunshine]

Yes, to be fair, the student doctor who diagnosed me with FND did say that they probably haven't yet invented the machine that can see it. But that label has caused me so much trouble. I was treated so well when I was a Parkinson's patient and so badly as an FND patient. The stigma is terrible. They just think "mallingerer" and are rude, dismissive and even physically abusive. I even ended up with medical PTSD and hate hospitals now!

[Misstea in reply to Van604]

There's a type of MRI machine that was used on a woman in Australia who suddenly started to speak with a wildly different accent. This MRI is not used here for diagnosis purposes here in the US but it can actually provide imaging for functional faculties in the brain.

[Cornelia35]

Hi, Pppd takes for some people many years to settle , watch the Steady coach on YouTube. She is more helpful than benzos which are extremely dangerous and you need to stay away from.. mine got a little better after 3-4 years… stay away from vaccines antibiotics etc don’t trust just anyone many doctors have zero idea what fnd or pppd is. You are lucky you live in Uk i live in Cyprus so am in Gods mercy regarding help! Also definitely you can drink caffeine its not the diet the problem its your brain the circuits.. they don’t communicate properly mine was triggered from vaccines and now there are studies that prove covid vaccines trigger fnd .. always remember there is no cure to this condition… be patient and strong ! 🙏🏻

[RubyRena]

Hello Sparkling Sunshine,

I am 66 and suffer myoclonic jerks, an off balance feeling, episodes of vertigo (having it today!), depression, multiple and possible migraine-caused episodes of weirdness. It all started when I was 48 in perimenopause.

I am in otherwise good health--I exercise, dance, hike, ski (maybe not until I get my knee fixed)

Things I have discovered that smooth things out are clonazepam, despite most negative attitudes towards it in med community, a small amount of prozac (10mg per day), CBT, lots of water, apples, socializing despite some occasional reluctance and trying to eat a low meat low processed food diet.

Most of the time I feel physically and mentally well despite vertigo bouts and anger about our horrific government situation in the US!

I have tried to taper off the clonazepam but am not into taking anti-epileptic drugs (I do not have epilepsy or other chronic brain conditions) It seems to have worked the best over the years but my guilt over taking it has led to two second opinions, with high end doctors who seem to agree that there is are risks, but I CAN keep taking it.

My neuro is OK either way, but most neuros will refuse to prescribe it, and getting off this med is holy hell I read! I may try tapering again soon, but truthfully I hate to fix what isn't broken!

[Sparklingsunshine]

Thank you, I know that Benzos arent ideal but I have tried so many things over the last two years and realistically is Clonazepam any worse than the other drugs they offer? antidepressants, BP drugs, anti epileptics are no walk in the park either.

I think Benzos get a bad rap and there seems to be a lot of hysteria over them. I've stuck to no more than 0.5mg every other day tops and went for weeks at a time without using them with no ill effects so I'm pretty sure I'm not addicted. However they are the ONLY thing that works. And I have to be able to function.

I cant tolerate a lot of drugs due to having Ehlers Danlos, I've tried CBT ( a waste of time for me) vestibular physio. I was even on a clinical trial from the University of Cardiff using a computer programme game designed to combat visual vertigo and motion sensitivity.

I'm waiting for a referral to the migraine clinic to see if the new CGRP drugs might be an option. Silly question but I'm assuming the fact Clonazepam works so for me indicates my issue is vestibular. I find part of my frustration is not knowing exactly what I'm dealing with.