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Symptoms shifting/becoming different

Is this a normal thing with MAV?

My symptoms more than “getting worse” are just changing into different, creepier ones, I used to feel like I was swaying side to side but my environment used to stay/feel the same, for the Past week this changed and I’m very scared.

On top of the swaying from side to side I now have rocking back and forward feeling but when this happens it feels like my environment is changing, everything feels wavy, I don’t think it’s coming from my eyes because I’ve experimented focusing my eyes on something and it doesn’t move or change, the wavy feeling is coming from my insides, inside my head, my extremities and my belly.

On top of this I’m having this “bouncy” after movement feeling, it doesn’t happen every time I move but it’s happening very often, I feel an after feeling of bouncing whenever I move, the only way I can describe it it’s as an echo of movement.

Im trying really hard to not panic but it’s becoming harder and harder. All this started on day 5 of nortriptyline and I became so scared that I stopped the meds on day 8 to see if it would stop but it didn’t, I’m freaking out about going back on the nort… Im anxious about losing the little ability to function that I still have, I hate this condition and I hate that stupid fact that life chose me to get it.

This is extremely normal with Mav. Probably more normal than having only the same symptoms over and over. For example I’ve had weeks with only rocking, then dizzy, then head vibrating, then sound sensitivity, and right now experiencing light sensitivity. Also many of them coming at the same time. But they always change, sometimes come back, sometimes morph. It doesn’t mean we’re getting worse I don’t think. The Mav brain is extremely hyper sensitive so it always reacts to different stimuli and manages to get stuck in weird patterns for a while. If you stay on the right preventative med long enough these should disappear. As I’m typing this I’m trialing topamax and have had several new symptoms arise but am trying to stick through it and not give up. The symptoms are probly the brain and not from the meds. Hope this helps

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I’m gonna jump on in and agree with Max. Super common for symptoms to morph, wax and wane. Change is the only constant.

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Yep. And I think it’s a good sign: after all it’s got to change to get better.

Mine morphed for the worse several times. Then morphed to ‘just as bad but different’ several times. Then one day I detected less symptoms and very slowly that has continued and symptoms fell away.

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A VRT therapist told me to be prepared to expect anything to happen during treatment/recovery. She was referring generally to any balance disorder because at that point I had not been diagnosed specifically with MAV. She was just treating constant 24/7 dizziness and balance issues.

The feeling when the car stops moving or your feet stop walking and internally you feel you are still going forwards? Common with vestibular condition.

I quote a comment made by Margaret @Revolving recently on another thread, and leave your to draw your own conclusions.

because I had to wait for over a decade for a diagnosis and treatment I am now chronic and will be likely to need meds for life

From my own experience I’d say meds offer the best way forwards. Helen

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When the rocking/vertigo/dizziness first starts being constant I suspect, just like me, everybody thinks “Well, if only this would stop, I’d be OK” and subconsciously we are all expecting it to ‘just stop’ as abruptly as it appeared to ‘just start’ but, as we now know, that’s not the way it goes at all. That constant imbalance is just one outward sign that there is something vestibular going on internally that needs to calm down and these outward symptoms will continue in some form or another throughout the condition’s duration. Quite often the feelings do appear to be coming from inside our bodies. Helen

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I’ve had that from the beginning but it’s not what I’m experiencing now. The new feeling is more like a repetition of small movements, let’s say I stomp my foot to kill a bug, after the action I feel 2-3 repetitions of the stomp even tho I only did it once, that’s what I meant by the echo of movement, it’s like a re-bound kind of sensation. Sometimes it’s so freaking hard to explain our symptoms, I try to explain them to my husband and he just stares at me like I’m speaking another language.

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That echo thing is one of mine, too. We speak your language here!

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& that’s exactly why this website is number 1 on my frequent visited list on my safari both in my phone and computer lol …as soon as I have problems making people understand what I’m going through I just come here and feel more at home lately

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Me, too. Hence my crazy long diary entries. This site must be what my indoor dog feels like when I take her to the dog park.

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OH MY GOD THIS IS EXACTLY WHAT I AM EXPERIENCING.
It is so bizarre-- but for me it’s like, after a forty minute car ride I’ll have the rebound sensation of being in the car for twenty minutes straight after I stop.

Is this common with vestibular disorders??

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Delayed reactions very common with me. Anything up to three days sometimes. With car journeys sometimes slightly queer getting out of car, feel like still in motion, settled down, then next morning 18 hours later unable to stand up. Just balance pushed too far to cope and it cuts out,

The rebound sensation I was told by GP is diagnostic of some/any/all balance disorders. Helen