My symptoms more than āgetting worseā 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 Iām 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 donāt think itās coming from my eyes because Iāve experimented focusing my eyes on something and it doesnāt move or change, the wavy feeling is coming from my insides, inside my head, my extremities and my belly.
On top of this Iām having this ābouncyā after movement feeling, it doesnāt happen every time I move but itās happening very often, I feel an after feeling of bouncing whenever I move, the only way I can describe it itās as an echo of movement.
Im trying really hard to not panic but itās 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 didnāt, Iām freaking out about going back on the nortā¦ 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 Iāve 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 doesnāt mean weāre getting worse I donāt 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 Iām typing this Iām 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
Yep. And I think itās a good sign: after all itās got to change to get better.
Mine morphed for the worse several times. Then morphed to ājust as bad but differentā several times. Then one day I detected less symptoms and very slowly that has continued and symptoms fell away.
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 Iād say meds offer the best way forwards. Helen
When the rocking/vertigo/dizziness first starts being constant I suspect, just like me, everybody thinks āWell, if only this would stop, Iād be OKā and subconsciously we are all expecting it to ājust stopā as abruptly as it appeared to ājust startā but, as we now know, thatās 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 conditionās duration. Quite often the feelings do appear to be coming from inside our bodies. Helen
Iāve had that from the beginning but itās not what Iām experiencing now. The new feeling is more like a repetition of small movements, letās 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, thatās what I meant by the echo of movement, itās like a re-bound kind of sensation. Sometimes itās so freaking hard to explain our symptoms, I try to explain them to my husband and he just stares at me like Iām speaking another language.
& thatās exactly why this website is number 1 on my frequent visited list on my safari both in my phone and computer lol ā¦as soon as I have problems making people understand what Iām going through I just come here and feel more at home lately
OH MY GOD THIS IS EXACTLY WHAT I AM EXPERIENCING.
It is so bizarre-- but for me itās like, after a forty minute car ride Iāll have the rebound sensation of being in the car for twenty minutes straight after I stop.
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