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symptoms worse with different activities


#61

Hi, I got a diagnosis of vestibular migraine.


#62

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.


#63

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.


#64

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.


#65

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!


#66

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


#67

Hi, do you feel that there is a disconnection between your eyes and your brain? I remember sometimes my friends would tell me that my eyes looked “dead” (I love my friends!). That was because I was avoiding looking around me as that would make the dizziness worse. Another VR exercise is to look around your surroundings more.
I have problems with showers too, probably because the head goes backwards and specially if the water hits my feet. I also seem to hear patterns in the water flow, not only seeing them on the floor.
I agree with Helen that there are lots of things you can do to help. Trigger avoidance, migraine diet and supplements plus trying to control stress/anxiety. Have you looked at the article on visual vertigo on Dr Hain’s website? While it does not cure everything, sometimes understanding what is happening is a great help. Vestibular/ocular reflex exercises always make me feel better for a while.


#68

Often this can feel like a time lag. Guess it probably is.

Excellent point. I’ve always found a deeper understanding of something, anything not just MAV, demystifies it, takes away the fear.

Interesting. I say that because alot of people with unstable migraine or MAV find it actually makes them much worse (me for one). Dr Hain doesn’t recommend it for MAV only for peripheral vestibular disorders and I’ve seen other medical papers stating the same. I know you are lucky and have a knowledgeable therapist and it’s good you find it helpful. I certainly wouldn’t encourage anybody to try going it alone with exercises off the internet. I think they would need a knowledgeable therapist of which the UK boasts very few unfortunately. Helen


#69

I agree about the VOR exercises and that nobody should try them without a therapist advice. They actually made me feel worse at the beginning, I had to go very slowly and increase repetitions very gradually. I just wish there were more specialised therapists to help us all.


#70

Hi, I just feel like my whole head and eyes are disconnected. Like I can see everything but I feel visually detached from it, I suppose like when you are drunk but mine feels more dreamlike. I can physically feel it coming from my head thou. Outside is a lot worse and a lot more uncomfortable. I am taking mag and supplements daily and will continue with the ami and gab! Yesterday I had tingles down the right side of my face and I’ll sometimes get a shooting/stabbing pain in my head or tingles/vibrations on my scalp. I will check out that website thanks


#71

Thanks as always Helen. I think I just feel defeated at times and put my wall up against meds! Need to learn the act of patience.


#72

Better to put your wall up against panic, anxiety and triggers.

A very difficult lesson to learn particularly in this day of instant everything. Not sure one can learn it but it’s worth a try. Helen