24/7 Rocking sensation

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I have been sick for 7 years and still don't feel like I have answers. Then, in July I randomly started feeling like I was on a rocking boat 24/7, and it hasn't gone away since. It is so bad I don't really have any quality of life and it gets so bad I need to lay down but laying down seems to make the sensation much worse.

I have been diagnosed with; lyme, mold illness, mast cell, sibo in the past and reactivated EBV previously. None of these treatments have helped and often times they just make me feel worse.

Has anyone had something similar?
 
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I’ve had it early in my illness where I’d be sitting in a chair but feeling like I was doing forward rolls... it’s
hard to explain.. luckily it eventually went away.. it might have had something to do with the inner ear.. doi you have any ear canal sensations?
 

Judee

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I get this where my body rocks. My mom has a pulse oximeter unit and it always shows my heart racing when this happens. Also it does feel worse in bed; almost like my whole body is zinging.

You might want to check your heart rate when this happens and see if the same thing is happening to you too.
 

leokitten

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I had this for many years and in the last couple the symptom mostly reduced on it own, I occasionally get it now but not constant anymore. It feels like the vestibular center of my brain and ears were not functioning correctly due to ME. Don’t know why the symptom got better out of nowhere, might be worth checking medications you are taking. Are you taking memantine? This is one med that can make vestibular issues worse.
 
Messages
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I had this for many years and in the last couple the symptom mostly reduced on it own, I occasionally get it now but not constant anymore. It feels like the vestibular center of my brain and ears were not functioning correctly due to ME. Don’t know why the symptom got better out of nowhere, might be worth checking medications you are taking. Are you taking memantine? This is one med that can make vestibular issues worse.
I am not taking any medications so it doesn't appear to be related to meds