Could this be MAV or PPPD

New here, let me introduce myself 🤝
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Hi

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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Hello
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.

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Good evening,
Your symptoms sound similar to mine. I don’t have room spinning vertigo but I feel dizzy or off balance like rocking on a boat. It started with migraines and dizziness but they have stopped but the dizziness is still there daily. I was diagnosed with chronic migraine and PPPD. They prescribed Lexapro for the dizziness so we will see if it works. I also see a chiropractor and vestibular therapist regularly.
I wish you the best getting help.

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I’m more and more convinced its PPPD or even neck related. I have a ridiculously bendy neck due to hypermobility. Some people with my condition end up with cervicogenic dizziness caused by the neck muscles and tendons being too lax.

I’ve made a diy neck collar out of newspaper and a scarf to wear at home and it definitely helps reduce the balance issues. I’m considering seeing a chiropractor or asking to see the hospital physios again. I wear the collar at home and I’ve noticed my neck feels less heavy and achey.

I was noticing my neck was hurting at the back. I’m also trying to avoid poking my chin out when looking down on a phone or at a tablet. Very very common postural issue in our digital age and it puts tremendous strain on the neck. I wish you well too.

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Very common with dizziness / migraine stuff. Trying to sort out which causes which is pretty difficult. I have a congenital fusion between C6 / C7 and had lots of neck issues long before I was dizzy. Now that I’m not dizzy, I still have neck issues, so for me I don’t think it was the cause but could have been exacerbating things I guess. Anyways, I have some basic PT exercises that help a lot. Massage also helps a great deal. Chiropractors scare me these days, especially with my fusion. PTs have also warned me about chiropractors.

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I have moderate disc degeneration at c5 and 6, I dont know if thats contributing but my neck aches at the base of my skull and sometimes feels like my head is too heavy for my neck. The physio I saw said most people of middle age would show signs of neck wear and tear if you x rayed them and its just part of getting older.

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These are classic vestibular symptoms where your brain stiffens your neck in an attempt to stabilise your vision to improve your balance.

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They can also be symtoms of hypermobility where the neck structure has to work harder than normal to support the head due to lax and stretchy tendons and a greater range of movement. Being hypermobile was great when I was a kid and could contort myself into different positions but as a post 50 year old woman its actually a bit of a curse now.

One thing I’ve found interesting is that much of the medical literature I’ve read regarding PPPD is that it doesnt respond to antihisamines like Certrizine, Promethazine or Betahistine for example. Doctors are told to try SSRI’S or SNRI’S, combined with CBT and VRT.

However all 3 of the above have helped me to a certain extent. Certainly my symptoms have definitely lessened when I’ve taken them. Its not a cure but it makes them more bearable. Any thoughts on why that is? Its making me doubt whether the diagnosis was accurate.

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Slowing the brain down probably helps reduce the extremes of the perception of symptoms which reduces anxiety which probably helps prevent a negative feedback loop.

Diagnosis is just a label. Many conditions don’t have definite aetiologies least of all MAV and PPPD. They are not much more than sets of symptoms with some data on responses to certain treatments.

Common comorbidities are left unexplained: Fibromyalgia, POTS, BPPV etc. Why?

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Fibro is central sensitisation so I can see why that one fits, plus its a hyperactive response to pain. Its weird because i have a high pain tolerance to pain from an obvious cause ie i walked around for 4 days with acute appendicitis, by the time I realised it was a bit more than an upset stomach my appendix had gone gangrenous and i needed IV antibiotics.

Same with childbirth, my second son was born with just gas and air. Yet I seem super aware of peculiar sensations in my body like pins and needles all the time in my hands and feet, twitching muscles in my legs, sudden stabbing pain for no reason.

When my Fibro was very bad I used to be on slow release morphine. I just didnt respond or was allergic to lesser pain meds. These weird and annoying symptoms probably wouldnt bother or even be noticed by someone with a normal CNS but those with Fibro and migraine are super sensitive.

POTS is dysautonomia or a malfuntioning of the autonomic nervous system, which controls functions which we cant control like digestion, blood pressure, temperature, pulse rate etc. I have aspects of dysautonomia, common in both Fibro and hypermobility.

I’ve seen several posts mentioning POTS here. Interesting as POTS shares many symptoms that overlap with Fibro. I’ve sometimes wondered if my balance issues are a sign my Fibro has worsened or I’ve developed POTS, sigh.

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That’s fine, but then, for example, why not call it Fibro not VM and add the VM symptoms to the definition of Fibro? Ditto POTS.

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If you look at the symptoms for Fibro they’re already as long as your arm and many are pretty vague and could be attributed to a lot of other things. The diagnosis of Fibro is pretty specific, to do with tender points on the body and comes under a Rheumatologist, where as its a Neurologist for Migraine and a Cardiologist for POTS. No joined up thinking is my guess. And of course there’s often a degree of overlap with co morbidities.

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A quick Google:

“Doctors diagnose fibromyalgia based on all the patient’s relevant symptoms (what you feel) , no longer just on the number of tender places during an examination. There is no test to detect this disease, but you may need lab tests or X-rays to rule out other health problems.”

:man_facepalming:

So:

  • Subjective
  • Based on list of symptoms?

I do wonder about medicine sometimes!

So what if Fibromyalgia is actually a vestibular condition that causes the symptoms of Fibro as a side effect?

Or an anxiety condition that causes both the vestibular and fibro-specific symptoms?

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I was diagnosed in 2008 so things might have changed, as you said above there’s no definitive test for Fibro, in my honest opinion its a bit of a dustbin diagnosis. A diagnosis of exclusion, ie we’ve excluded everything else we can think of, here’s a label now go away.

I’ve seen many theories about what Fibro is over the years, post viral, similar to CFS, autoimmune, neurological. It wasnt that long ago doctors didn’t even believe it was real. Many thought patients were hypochondriacs or malingerers. Its a female centric condition, like migraine, and medicine has an unhappy history of treating female complaints.

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It surely must be real. I wish we had better understanding.

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The huge rise in Long Covid and the money that has been put into researching that may shine a light on other diseses like CFS, Fibro and even MS. Many cases of MS are now linked to Epstein Barr virus, but of course not everyone who catches EB goes onto develop MS.

In the same way getting Covid doesnt mean you’ll get Long Covid. Its seems as though genes play a part as well as how reactive your immune system is. Post viral complications aren’t new of course, after the Spanish flu epidemic doctors saw many people with mysterious, lingering symptoms. Maybe in time they’ll discover the mechanism for why some people get a virus and shrug it off and why others are left chronically ill.

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14 posts were split to a new topic: … and more migraine debate

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Sorry to be replying a year after you posted! I’m also hypothyroid and receive expert advice from the thyroid forum on HealthUnlocked site. This is a UK site but has many members from other countries.

When you increased Levo did the brand change? Your reactions seem like an intolerance to fillers in the Levo.Fillers that can cause problems for some people include lactose, mannitol and acacia.

(Sorry, which country are you in?)

I expect you know that other meds must be taken about four hours away from the levo and that a lot of meds classed as antipsychotic, like Prochlorperazine are contraindicated when hypothyroid. But you have to make choices!

I haven’t discovered a link between thyroid and dizziness except that the thyroid is connected to all the cells in the body. However, I have read that some people get a fibromyalgia diagnosis when it’s thyroid causing those problems all along - so hopefully if you’re on the right dose and your FT3 is high enough maybe your fibromyalgia is better.