Hello all,
Anyone experience a sensation that everything is just rotating slowly all the time? I feel that way right now after like two days that were ok. Now Iām back to this feeling. Itās so hard to concentrate and even smile. Anyone having any advice on how to get through this or how to make this feeling get better? I have a Drs appointment in a week but not sure what to do until then.
With these crazy symptoms you simply have to do your best to ignore them until they pass. And they invariably will, always keep that at the front of your mnd.
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Thank you. I feel like there is something more that can be done!
If youād asked me this on Christmas Day 2017, Iād have answered āIāve felt as if I were rotating slowly, and when under stress/balance extra challenged, faster, all the time for more than 3 yearsā.
(Itās only eased off a couple of months ago for the most part presumably as a result of taking preventatives).
It is ārotaryā this sensation? In what way exactly? Do you mean the room/environment is rotating around you, Am I correct?
That, by my understanding, is true vertigo. You or the environment rotating. True vertigo. According to the top neuro-otologist I saw who originally shocked me by giving me a diagnosis of probable MAV, the true vertigo was a positive sign of MAV. I was shocked because It was so many years since Iād had a āsickā headache as I know them, Iād forgotten them and why I never eat chocolate.
Have you been given a MAV diagnosis yet? Iāve been given it twice by two different neuro types but they always include the word āprobableā. There doesnāt seem to be any way of getting a definite MAV diagnosis. However the top N-O I saw did say if I responded to preventatives MAV was the most likely cause.
Yes, we all feel like that. It always seems amazing thereās no magic pill. Friends and relatives expect you to come back from the consultant with pills and a cure but MAV doesnāt seem to work that way. The N-O told me itās so multi-factorial. As must balance be. After all scientists are still trying to make robots walk on two legs. Nobody really seems to understand all the factors that keep us upright, our balance and MAV is a balance disorder so thereās not much we can do directly to make it stop much as we would love to.
Iāve suffered so I wonāt insult you by telling you to try to ignore it. That can prove impossible. Could try finding something meaningful you can do to distract yourself a bit whilst you, like the rest of us, wait it out.
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Hello @Onandon03! Thank you for your reply! I am sorry you have felt that way for a while. May I ask which preventative you are on? Also, were you taking medication before when you werenāt feeling well? Iāve been feeling a couple of things lately. 1) is like a tightrope sensation. Like when I walk I feel like I am tilting slightly to the left and the right, like I am on a tightrope. I also feel like the room and inside my head is rotating around. The symptoms seem to morph because I used to feel more dizzy in my body like my surrounding are moving but now my head is the one that feels really off. I havnt gotten a solid diagnosis of MAV. My neurotologist thinks possible āatypical migraineā but is not 100% sure. Amitriptyline is the first drug I tried which helped a lot for a while but kind of faded. Iāve tried Noritriptyline, Effexor, Celexa, and Verapamil. I donāt think Iām currently responding to the verapamil or the Celexa unfortunatly.
Iām on Propranolol. I wasnāt on any drugs at all for anything before my MAV became constant 24/7. For more than a decade before that the attacks were episodic and unmedicated. Itās much more bothersome once itās chronic. The other symptoms sound like various manifestations of vertigo. MAV constantly morphs. Thatās about the only consistent thing about it, it keeps changing.
I donāt think you will ever get a solid diagnosis of MAV. Donāt believe such things exist. I donāt think enough is known about the condition for that to happen. Both neurologists I saw said āprobableā. I can live with that. Just go on trying the treatment options til you find one that works for you by controlling the symptoms. You say you have tried some and they and the current ones now arenāt working. Are you sure. How long a trial have you given them. Were you able to trial them for the suggested period of time or were the side effects too great. I understand to be effective we have to be on the maximum tolerated dose for the recommended time period. Amitriptyline for example can take 6-8 weeks to really work according to the documents to which the neuro-otologist referred me and they recommended 6 months before considering cessation. That means It can prove to be a long, and trying process.