I’ve posted before. Am newly diagnosed but am having difficulty accepting diagnosis. Is MAV 24/7? I have not been without symptoms since August this year. There may have been a few days when I have felt less off-kilter, less weird, less sick but never “well” or “normal”. In my ignorance I just assume that any diagnosis of migraine would assume that the patient has episodic symptoms and not constant ear fullness/ nausea/disorientiation/brain fog etc. I wish I could just sit back and accept the diagnosis and wait for the medication to work…if it works…but this is typical of me…worry worry worry. Now I’m convinced I have something else and not MAV and will never ever be well. Any advice or help would be greatly accepted.
My MAV started years ago, with a constant subtle rocking and swaying. I have not been without this symptom for many years, except when I’m sleeping. I had what dizzyblonde calls “my big crash” with a severe episode of true spinning, etc. This settled down into a constant, often violent, rocking and swaying. I NEVER feel normal. I am housebound and practically bedridden. Some of my local docs claimed that this could not be a migraine because it didn’t follow the typical migraine cycle. They were wrong. I have a continuous visual migraine aura, a constant vertigo, constant weakness, constant brain fog, a wide variety of constant sensory distortions, such as auditory.
And yes, I also, worry, worry, worry. This is such a difficult affliction to diagnosis and to treat. But I have had improvement, so I’m very hopeful that things will continue to go in the right direction.
This is a great forum and i’m sure other will send you similar stories and provide you to links to medical websites which will help you understand your diagnosis.
Personally, I had low grade symptoms for years, and also had a “big crash” a few years ago. I was really limited for a few months, but have gotten better with medication. Vestibular rehab made me worse.
The eMedicine article was very helpful for me and my family, because it describes how the rocking, nausea, etc can persist for for years. My husband didn’t “get it” until he read the article. I send it to medical providers to educate them.
The worry is natural I think. If you were falling off a cliff, wouldn’t you feal fear? Vertigo is the constant feeling of falling. Why wouldn’t you worry? and who wants to feel like this.
My first oto-neurologist wasn’t all that helpful: but he did say that in his opinion, vertigo is the worst symptom that one can suffer with, that won’t kill you.
We tend to post our concerns, but people do get better.
Just being validated helps a lot.
For me it has been constant. Some days are worse than other days. It waxes and wanes. This is a chronic condition and with a small amount of anti-anxiety medicaiton…it helps so that i can atleast get out and do some things + hold a part-time job. Without it…i would definitely be home-bound.
Do you often feel like you are floating, rocking, or tilting, even in bed?
Have you tried any medications that help? Calcium channel blockers, beta blockers, benzos???