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New here & sharing my story

Hi all,

I, like many others, have been a ‘lurker’ on this site for some time now and have found it massively helpful in understanding this condition. So I thought it’s about time I share my story to give back and help anyone else struggling with MAV. I’m a 30 year old female.

In Feb 2020, I suddenly experienced tingling – a pins and needles type sensation in my feet which spread upwards in my legs and then from my hands up my arms within one day. After trying to move and ‘shake it off’ I realised it wasn’t shifting. I went to see my GP and had some blood tests done. They said I was a ‘bit low’ in Vitamin B12. They suggested going away and orally supplementing this vitamin. However, things got worse – I started to experience a lot of joint pain, sore tongue etc. so I went back and they started me on a loading dose of Vit B12 injections. The day after my first injection I went to get out of bed and I felt incredibly dizzy, feeling like the room was moving around me. I had to go back to bed and the GP said this was likely a side effect of the injection as they give you a huge dose. After several more injections, I often felt dizzy 24 hours afterwards. In this period of time, I felt a LOT worse – it was like someone had turned the volume up on my nervous system. I was jittery, on edge, easily startled, experiencing muscle spasms and generally feeling unwell and exhausted. This led the GPs to question whether it really was a B12 deficiency as I didn’t seem to be getting better. I convinced them to do a second course of 6 injections but still didn’t feel a whole lot better. By this time, I was feeling anxious about what was going on and it seemed like my symptoms could also fit with MS. Also, all of this was happening during the first covid lockdown and so it was difficult to access healthcare during this period (plus allowing ample time to worry about what was going on with my body).

I went privately to have an MRI done and thankfully this was normal. At this point, I had started to notice feeling a bit like I was on a boat most of the time. When sitting in front of a computer, the rocking motion became more noticeable. I had a phone triage with an NHS neurologist who said that he thought it could be related to my history of chronic classic migraine. I had started to get much more frequent migraines at this time too. I had been taking 40mg of Propranolol for the past few years to great effect – had very few migraines and was living life without making any adjustments to manage this. The NHS neurologist asked my GP to prescribe me Amitriptyline 10mg and to taper up 10mg every few weeks. Unfortunately, I started to feel a lot worse while taking the Amitriptyline. I was struggling to walk for longer than 10 mins. I kept feeling really light-headed and having to come back home rather quickly. This was also when the old ‘trampoline floor’ sensation started. After about 6 weeks on the Ami, I decided it was making me feel much worse – I think it might have been causing my blood pressure to be too low (on top of the propranolol and I already had low blood pressure). So I stopped the Ami – my GP said no problem to come off 20mg without tapering down as only on it a short time. Boy, was this not the case. I was a little apprehensive so I cut the pills in half and tapered over about 2 weeks but even this triggered constant headache, awful nausea and I wasn’t able to do much for about a week.

A few months later, I heard about a friend of a friend who had very similar symptoms to mine. This was very lucky as he pointed me in the direction of Dr Surenthiran. He diagnosed me with migraine variant balance disorder and started me straight on the 7 Cs diet and 10mg Nortriptyline in August 2020. After reading on this forum, I now realise that I have been lucky in getting a diagnosis very quickly (5 months after dizziness started). I have been increasing the Nortriptyline 10mg every 4/5 weeks and I am now on 50mg. My migraine (headaches) frequency has substantially decreased (~1-2 a month & quite often after I’ve eaten something I shouldn’t have) so I am grateful for that. I haven’t noticed any drastic improvements to the vertigo yet. I think the rocking sensation has become less intense and sometimes feels more like a rotational movement now. Some days the trampoline floor feels less bouncy – it is such a relief on these days I want to walk and walk! Unfortunately, I think I’ve now hit my limit with going up on the Nori as the side effects have become a bit of an issue. I feel constantly bloated and constipated (despite taking magnesium oxide & lactulose). So, I made another appointment with Dr S a few days ago. He advised me to go back down to 50mg (I was on 60) and he has now prescribed me Pizotifen which I started yesterday (0.5mg for 7 days, then double for 7 days, then triple).

I know I am one of the luckier ones with MAV as I don’t seem to have episodes where the vertigo really flares up. It’s just a fairly constant feeling of movement which some days is more intense than others. This has meant that I have been able to keep working throughout although it has been challenging at times. Anyway, I remain hopeful that I will get better over time (thanks in part to this forum). I hope my story might be useful for others. Would be particularly interested to know if others have had issues with Vit B12 deficiency too.

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Hi MaryGoRound (liked that).

SO glad you were eventually brave enough to join us(and to all those other long-term lurkers ‘out there’ have you yet to realise if we all ‘lurked’ for ever there would be nothing to read?)

You seem to be well on the way progress. Well done. I know it’s not easy.

When it comes to Vitamin B12 you will find lots of posts if you use Search. Your reaction to the injections are pretty typical. I know several people who are B12 deficient but without MAV who react that way. As MAV is a state indicative of central (hyper)sensitisation you could have a bit of a double whammy there.

@LucyLabrador takes both Nori and Pizotifen. She found the combo quite successful.

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Hi, great that you joined. I’m also on pizotifen and found it great. However I still have good and bad days. The feeling you describe, to a lesser degree, has never left me. I’m hopeful though.

Hoping things improve. So good you were able to continue work. Fantastic.

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Hey, welcome to this forum. Hope everything works out soon.

Hi Onandon03,

Thanks for the warm welcome! I hope so, feeling a bit more wobbly this week but assuming that’s my body adjusting to the Pizotifen, will try and be patient.

Thanks for flagging up how to check for other B12 posts, I’ll have a look. Yes, I was pretty sure it wasn’t just a coincidence that the MAV symptoms started at that time. And it’s always useful to hear about some success from others on similar meds - keeps the hope alive!

Thanks :slight_smile:

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Hi Belindy,

Glad you’ve found some success with Pizotifen! You might have said this elsewhere but have you tried combining with any other meds? Also, my doctor said that we can also become hypersensitive to the normal rotational movement of our bodies and we almost need to train our attention to stop focusing on it (I would be sceptical but I’m a psychologist and am fully aware of the role of attention in exacerbating symptoms). I’m not saying this is what remains for you but it could be one explanation and something that I would hope would improve with time and adjustment back to usual activities.

Hey bcrouth,

Thanks for the warm welcome!

Thanks for your tips @Marygoround. I am fully aware of the psychology behind it, and know how being hyper vigilant about movement can delay recovery. I also teach Psych. I try not to be, I’m mostly distracted at work all day now and do find it’s less noticeable. But, it’s still there if you know what I mean. Brains are so difficult.

No I haven’t yet combined with other meds, but seriously thinking about suggesting this to my neuro in June when I see him next. I’m just not sure which one? I’m having an awful day today, lots of symptoms back and having a couple of days off. Praying I improve. I’m really scared about returning to rock bottom - a place I was inhabiting only a few months ago!

Welcome to the forum. :slightly_smiling_face: Really interesting to find someone whose symptoms also originated from the feet! Back in February 2019 I’d contracting a flu and after 10 days it died down but I started getting weird tingling, numbness, pins & needles in my feet and legs and I found myself unable to walk. I was also extremely scared that it was MS or something. Took a few months, but I was finally diagnosed with vestibular neuritis, followed by vestibular migraine. My blood work, including B12 was all normal.

Annoyingly, I still get tingling in my feet when my vestibular system flares up which is currently being investigated (had a brain/spine MRI and nerve studies 1 week ago). Drives me crazy at times. I’ve spoken to 5 different doctors and none of yet been able to 100% confirm if the tingling is due to my vestibular condition. One of the more recent doctors I spoke to at the London balance and hearing clinic, said that tingling feet does occur with vestibular conditions but its on the rarer end of the symptom spectrum. Awaiting my test results now to see if they can conclude why it occurs.

Keep us updated on your progress!

Oh yep, then you’ll definitely know all about this @Belindy yes I do know what you mean, I think it must only be a very slight bit left if we are only hypersensitive to the usual body rotation. Sorry you’ve not quite got there and seem to be having a flare up. It might be worth considering another med, it seems lots of people do well on a combo. I can only go on my experience but Nortriptyline has helped me a bit (not as much as others it seems but that might be as I wasn’t able to increase the dose any further). Yeah it’s hard knowing that you can technically undo your progress but then again you’ve also come this far in a few months so you’re not likely to get ‘stuck’ there!

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Hi @ak90, oh no, it sounds like you had a confusing set of symptoms like me - that seem to overlap with many conditions. GPs were also suggesting Guillan-barre syndrome to me which also sounds like what you had, especially after an illness. Glad you got some answers in the end, the hardest part for me was the uncertainty of what was going on and it was made more confusing by the fact my tingling had actually started while I was travelling in South America - so had to go to the tropical diseases clinic too but they didn’t find anything.

I also still have tingling, numbness & nerve pain which comes and goes but is so much better than it was last year. One thing I will mention is that I’ve heard of quite a number of people that have had a vitamin b12 deficiency but their B12 result shows up ‘low normal’ and so it gets missed for a long time. This may not be the case for you but advice on the B12 forum I’ve used is to always get print outs of your blood results.

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