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symptoms worse with different activities


What is “Conservative” therapy?! Something to do with Brexit I’ll wager!


Yes, I’m also a Dr S fan and advocate, as I saw him 6 months ago for a diagnosis (privately). He was great and I’ve been on the MAV food regime which is very do-able. I also find stress a major factor and will be sure that anxiety always steps in to scupper my resolve.


How interesting that the symptoms disappear on holiday. Gives me to believe that they’re highly influenced by anxiety?


I thought I would update on my visit to Nicola Harris. I asked her if there was any point going to see Dr S. privately as I am not keen on medications anyway and she thought probably not. She mentioned another Dr at the Portland hospital who tries other things before drugs, I did not get his name, just that he is called Peter. She also told me that the drugs I tried were not the best for my case. Amitriptyline is an old tricyclic and makes you very drowsy, Nortriptyline would be better and Escitalopram applies mainly to problems with mood.
She told me that my visual vertigo as described by Helen is part of my vestibular problem, a symptom of it and not a separate entity, and that the symptoms are similar to BPPV. But with BPPV the room spins around you and it lasts only a few moments. As I am feeling a bit better since last week she did not think testing me for BPPV was a good idea. So we reviewed my VR exercises and in 2 weeks I have to start more complex ones with balancing on a balance pad… She also thought that maybe the vitamins are starting to kick in.
3 things have helped me this last week, first when an upsetting thought comes into my head, I say “No”,
when I feel myself getting tense and panicked I mentally say a word, “flop” or “relax” and let go, and the third and most surprising I wear sunglasses in the supermarket. I discovered it by chance and probably look silly, like someone trying to look cool, and it is difficult to see the labels, but I was able to do some shopping and to walk in the street afterwards without having a migraine episode. First time in a long time. So maybe those bright lights in supermarkets are triggers too.


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.