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symptoms worse with different activities


You are probably right, as just trying to control my negative thoughts and relaxation seem to make a big difference. Anxiety and stress are probably the main triggers, but with something that has been going on for 5 years I have lost a lot of my independence and confidence and that in turn triggers more anxiety.

split this topic #48

3 posts were merged into an existing topic: Migraine glasses / Lenses


Peter Goadsby I’d imagine. I very recently posted an article he wrote in The Guardian I think on Visual Vertigo which as your therapist said is a symptom of vestibular migraine. Indeed I’ve read it’s a symptom of most vestibular conditions including PPPD.

Well you were lucky to find Nicola Harris I’d say. I liked her description of Visual Vertigo. Some symptoms are so difficult to describe. She sounds as if she knows what she’s talking about. Vestibular physiotherapists in UK must be rarer than hens’ teeth and I doubt you’d find one my side of the Watford Gap. I bet there are virtually none outside of the Home Counties. It’s a shame more investment doesn’t go into such things.

Good for you. MAV and anxiety can be a self fulfilling vicious circle.

You’ll find lots of info in threads on here about how tinted lens help. Glad to find you are beginning to find ways of coping with the sensory hypersensivity ie photophobia, visual vertigo etc that is being thrown at you at the moment. Helen


Thanks for the update and glad you got on ok. At least you seem to be in good hands. Nortriptyline seems worth a go. Seems good you are getting relief with the vitamins. I am getting fed up with it. I had a better day Thursday until the evening but it doesn’t last. My fears have escalated as I have got to go to the hospital about my eyes and that is enough to do my head in. I am awaiting a appointment for a operation for something else if I can still have it gone and my stress levels are soaring!I hope you keep improving.R.


Thank you Helen your posts are always so informative, thanks to you I have just discovered PPPD. I was lucky to find Nicola Harris, it was completely by chance, I was at my wit’s end and just googled “vestibular physiotherapist”. I went there not expecting much but I was wrong. She gave me a diagnosis right away, something nobody had done in 5 years. I think she used to be at the Medway too.
I would think vestibular physiotherapists are very rare anywhere on the planet, and she gets what you are talking about, having suffered from MAV herself. It is such an unrecognised condition and she sees more and more people affected by vestibular problems, maybe as a result of our overstimulated brains.


Your search for assistance sounds a bit like mine. After twelve years of misdiagnosis and when symptoms really escalated I stumbled on the word ‘neuro-otologist’ somewhere on the internet, researched it, and found one I could get to see. Makes sense your lady’s description of visual vertigo that she’s had MAV herself. Don’t see how anybody else could have come up with such a perfect description other than by experiencing it. Wouldn’t have been possible. Helen


Sorry you are feeling so stressed at the moment, any visit to the hospital sends me in a spin too, I don’t sleep for 3 nights beforehand and my blood pressure is sky high. Of course that makes the vertigo so much worse. Had a better week but the dizzy feeling has returned tonight.
I hope you can find a way to calm your anxiety and that everything goes well at your appointment.


Hi thanks. Its not good is it. I had not too bad a day on Thursday accept for a hour or two in the evening then its back! My eyes are my no 1 priority but sitting in the opticians or for any appointment is a nightmare!R.


sorry, I missed the description of visual vertigo, cant seem to find it.


hey, what diagnosis did you get?


Here it is:

Could only have come from a fellow sufferer. Brilliant description I thought. Somebody knows what she’s talking about which is reassuring. Helen


Hi Cassandre. Can I ask what symptoms of visual vertigo you get?

I get where if I’m looking at a patterned rug or floor, it looks like it’s breathing slowly.


You’ll find it in this thread under one of my posts answering her. Helen


Patterns, particularly stripes, and checks apparently. Very much ‘migrainey’ symptoms. I was very slow on uptake with this one. When quite acute couldn’t undersrand why every time I looked down at my dinner plate sitting at the table I’d feel so extra sick and dizzy then, one day, as I rushed in the direction of the bathroom, I knocked the table and it shook and the orange patterned tablecloth vibrated, and I twigged. Plain white tablecloth. Plain is good. Helen


Hi, I got a diagnosis of vestibular migraine.


Hi, I get all the ones Helen highlighted in post 33, I also get the patterned floor ones, from the slabs on the underground passages, the pavement, to the black and white diagonal tiles just outside my door. I could not understand why I felt dizzy as soon as I went out, then I understood. That’s why the vestibular therapist is trying to make me rely less on my eyes and trust my vestibular system again and the prioperception in the body. Sometimes I feel like I have lost gravity or that my head is being pulled backwards.


To the lady in the US who recommended the Axon Optics migraine glasses, I wanted to say thank you, I seem to have lost you, your posts have disappeared.


Thanks Helen. I need plain in my life :joy: everything seems to busy for my brain. Luckily I don’t have a table cloth thou.

When I have a shower and look at our shaggy bath mat it lookes like small waves! I basically just shouldn’t look at the floor. I remember being in bed and my patterned duvet was breathing and I freaked as that was the first time.

I think I am coming to realise that no drug is really going to help and that passage of time is probably the biggest healer.


Thanks Cassandra. I hope you do well with your exercises. My head and eyes feel physically different like they have been pumped with helium and I’m going to float away!


Cannot quite agree with you there. This visual vertigo is very much a sign of hypersensitivity and low tolerance thresholds so the preventatives should help there. That, and trigger avoidance (plain duvet covers, tinted lens in supermarkets, avoiding bending forwards etc), will go along way towards helping as will reducing the accompanying anxiety and panic. Helen