Hello new to the forum :)

Hello fellow dizzy humans,

On 22nd May I had a migraine with aura in the evening that presented as any other, took some paracetamol and went to bed (my migraine was well managed, happened infrequently and unmedicated by GP) for the next couple days I had my usual yukky postdrome symptoms, tired, groggy, bit disorientated. I took plenty of rest and hydration and thought nothing of it.

Drove to work a couple of days later and felt that my vision still wasn’t right, felt like maybe a mild lingering aura, again thought maybe I needed some more rest (have had a bit of a stressful year) so had a cosy weekend, avoided anything making me feel worse (bright light, moving around too much, being outside in general) went to work after the weekend and again felt like I could not see properly when driving. This is when the anxiety kicked in! Spoke to a doctor client about an extended period of aura after migraine episode and she suggested speaking to GP. Since I was working I phoned for advice from out of hours and they asked me to come in. Light sensitivity was awful, queue me sitting in the hospital in my sunnies haha! They were pretty useless, suggested just perhaps an extended period of migraine. Checked temperature, blood pressure… gave me anti sickness meds and sent me to make an opticians appointment.

Next day off I go to the optician, he was actually really great, thorough check of the eyes he found slight astigmatism in my right eye but nothing he felt could be causing visual disturbances or headaches. He told me he had patients who suffer for weeks after migraine with visual symptoms and that it would likely subside in time.

When no change happened in a few days, I went off to my GP (I have an ongoing dental infection waiting to be retreated by a second root canal procedure so worried the infection might be the cause) she suggested perhaps BPPV and told me to keep taking the anti sickness and to do Brandt Daroff 3 times a day. I was going on holiday and bloody terrified of flying feeling like this, so took the meds and hoped for the best.

Holiday was actually ok, flight didn’t make things any worse… but walking around a city when you feel like your world is all skew whiff isn’t for the faint of heart. I’m a stubborn lady so I just got on with it.

After a bit of research and a chat with a girl I know who has MAV/VM I thought perhaps when I got home it was time to look outside of the NHS, so off I went to the private balance clinic and had an excellent 2 hour consultation and assessment with a Vestibular Rehabilitation Therapist, she was very comprehensive in her neurological assessment and confirmed a working diagnosis of VM, lots of information about SEEDS, vitamins (magnesium Q10, complex b vitamin) books to read etc, eye exercises to start once central nervous system calms down.

After another nasty attack during the working day that completely took my vision in one eye, my GP put me on Propanalol as a prophylactic for a trial of 3 months.

Currently my symptoms are better than the onset, I am managing to work, exercise (albeit sometimes it makes me dizzier than others), walk outside and even drive, although driving definitely still aggravates my symptoms the most. I still haven’t tried the visual exercises as I feel my body has been compensating doing normal tasks, I do fear them making things a bit worse again as she said they could provoke symptoms.

I found this forum when searching for various things and have found it to be very helpful, so thought I’d make myself a profile and introduce myself so that when I have my own questions (of which on this journey there are surely to be many) I can :slight_smile:

K x

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Welcome Kirsty! Sorry to hear you’ve got this crazy syndrome. I hope you find the site useful and continue to improve! :four_leaf_clover:

I lived in Edinburgh for 8 years btw :). Lovely City which has a special place in my heart still :heart:

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Thank you! I am suspected Neurodiverse and love a bit of hyper focus and research, so I have done a lot of reading these past couple months. Although I do now wonder if perhaps my feelings of overstimulation have been a vestibular disorder all along!

I am actually around 30 mins outside of Edinburgh but work in the city, it really is a beautiful place and I’m very lucky to spend a lot of my time there.

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Believe me, when my symptoms really hit I spent a huge amount of time doing research! It’s only natural to want to understand what may be happening and indeed want to try to work out how it might be fixed.

Unfortunately a lot of medical papers, particularly the ENT ones can be quite harrowing to read and there is a lot of catastrophisation in very direct language. Much of that is not applicable in most cases but it can make one very anxious.

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Hi Kirsty,

welcome to the forum! I noticed from your profile you are from Edinburgh. I am too and have the same ongoing problems. Can I ask what Vestibular rehabilitation Therapist you found? I would be interested in having a meeting with someone like that in the area.

G x

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Of course! I saw Dill Hurwitz, she’s out at Leith Links… I’ll pop a link below (hope that’s ok)

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