Could this be MAV or PPPD


I’m new and have been reading the boards for some time trying to get to the bottom of what is going on. I thought I’d type a bit of a timeline as I have several medical/chronic issues I’m contending with at the moment.

2008, diagnosed with Fibromyalgia, Joint hypermobility Syndrome/Ehlos Danlos (very bendy joints, stretchy skin)

2020 Was diagnosed with underactive thyroid, started on Levothyroxine.

I also have history of iron deficiency anaemia, Pernicious Anaemia meaning I need 3 monthly B12 injections and Vitamin D deficiency.

I also get migraines with aura, always the same symptoms, flashing lights, jagged patterns, zig zag breaking up my vision. I’ve had these very infrequently since adolescence but in the past two years, whether due to thyroid problems, they’ve got a lot more frequent.

I’ve probably had more migraines in this time than in my previous 50 odd years on the planet. I never bothered getting any treatment for these, just took generic painkillers, but now they are more frequent I get Sumatriptan prescribed.

This is going to be long so please bear with me but I want to include as much background as I can as I’m pretty stumped. Last September 2021 I had a routine blood test which showed my thyroid levels were still too high (TSH) so my Levothyroxine was increased from 75mcg daily to 100mcg. Within a few days I was experiencing itching, prickling, pins and needles on my head, mainly my scalp but also in other areas. I’ve had them in my hands and feet for years but always just learnt to live with them. They were annoying but I was just told they were likely part of the joys of having Fibro.

However I took antihistamines but this weird prickling didn’t go away. I’ve got a history of anaphylaxis to medication so was concerned the increased thyroid meds might be causing an allergy. I got stronger prescription antihistamines but nothing helped. I was getting migraines every 2 weeks to 10 days at this point. I came off the Levothyroxine, went back on it and again nothing helped. It was like ants crawling around under my skin and my scalp was particularly affected.

In the end I asked for a neurology consult, I was concerned that maybe I had been misdiagnosed with Fibromyalgia and it was in fact MS. There are no definitive clinical tests for Fibro, honestly its a bit of a dustbin diagnosis really, a we’ve ruled out everything else sort of label. My GP did ask if I was anxious to which I replied no I wasn’t until these weird symptoms started.

In mid April 2022 I had a migraine, took the usual paracetomol and toughed it out, I know it was a nasty one. I didn’t have the triptans back then. The next day I was walking home and started to feel very odd, like my feet were spongy or I was walking on a trampoline. I thought It was maybe fatigue or just feeling the after effects of the migraine. I hoped I’d wake up the next day and it would be gone.

Unfortunately its never gone. I’m here nearly 4 months later still struggling. I’ve had nerve conduction studies, MRI of my brain, all normal, so at least its not MS or a tumour. The neurologist when I saw him again suggested an FND or functional nerve disorder, another dustbin diagnosis. I’ve read up on FND’s and there seems to be a strong link with anxiety and depression, neither of which are relevant as before this started I was pretty happy and certainly not anxious or depressed.

I asked to try Sertraline 50mg as I thought it was maybe PPPD, unfortunately I seem very drug sensitive and it gave me some awful side effects, sweating, nausea and insomnia. I managed 5 weeks on it but found the S/E intolerable.

Sadly as part of my Fibro I’ve tried many SSRI’s/SNRI’s anti epileptics before, notably Amytriptyline, Noratriptyline Cymbalta, Prozac, Gabapentin, Pregablin, and had no luck with any of them. I was on Amytriptyline for a number of years for nerve pain and sleeping problems but had to keep increasing the dose to get the sedative effect I needed and of course with an increased dose comes increased side effects. I managed to get off of them and was doing pretty well, Fibromyalgia speaking, on greatly reduced meds. Just the occasional painkiller for pain relief.

I’ve been reading up on what meds you guys take and most of them are ones I’ve tried and failed with which makes me anxious about treatment options. I don’t even know what this is. Weirdly since the dizziness/imbalance started I’ve not had a migraine which seems significant somehow.

I’ve tried Prochlorperazine, which helps a little, I’ve tried Betahistaine which did nothing. I’ve had a negative BPPV test done. I’ve had intermittent ear pain for a few seconds, popping and crackling in my ears but the GP checked them and there’s no wax or sign of infection. No hearing loss and my dizziness is more in the nature of imbalance, not spinning.
If I was a drinker I’d feel like its being tipsy. Its worse when I walk but when it first started I could be sitting down and feel like I was lurching off. I’ve now asked for a referral to ENT. Thoughts please.

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I’m sorry to hear you’re going through this. I am not familiar with fibromyalgia or thyroid issues. Sorry I can’t share experience for those. I’m new to this group as well, and new to experiencing migraine & dizziness issues since January 2022 (which caused hospitalization). I’m still fighting to get well and still trying to understand & manage this new condition. I’m either currently on or have had some of the same medications mentioned in your post, as well some have been effective but most have not. I didn’t have luck with the ENT, they just gave me a hearing test rather than a diagnosis for ear ringing. Hopefully you can get effective treatment for recovery with your condition. It is comforting reading posts in this support group & finding that we are not alone. Wishing you the best in your journey.