Hi, I am nervous about sharing. I don’t usually join forums, but I found this one this morning and I can’t stop reading. I see myself in everyone here. I am simultaneously excited and terrified about that fact.
I have been dealing with many of the same symptoms every single day for about 2 years (although I think I had episodic symptoms on and off for about 10 years, only becoming chronic, suddenly in July 2017).
I am 51 with a history of classic migraines since I was a teen. In July 2017, I experienced a sudden moment of dizziness in a crowed lobby of a theater. No known reason, I couldn’t really stand, or walk or drive without severe spinning. I felt like I was dying, and that there was something seriously wrong with me. Many, many, many tests and emergency room visits later – I have no diagnosis other than suspected MAV. BUT, there were a few incidental finds along the way 1) My left carotid artery was 80% blocked. I had surgery March 2018, hoping my symptoms would improve, but they did not. 2) I have a very tiny, stable aneurysm in my right cavernous carotid artery leading into my brain that I am told not to worry about (easier said than done). Neither of these incidental finds is the cause of my symptoms, according to the Drs I have seen. I was originally told I had Cerebral Pseudotumor, but that diagnosis was dismissed after a normal lumbar puncture with normal CSF pressure. I have seen 3 neurologists, 2 neurosurgeons, 2 neuro -ophthalmologists, an ENT, Vestibular Therapists, and other Dr. s dealing with my vascular issues. They all now say I have health anxiety and MAV, most likely triggered with onset of menopause.
It is hard for me to work (I am a teacher and on my feet all day), it is hard for me to drive, I can no longer fly without major symptoms leading to panic attacks. I feel like my life is over! I am too young to feel this old. I don’t know if anyone has read this far, or what I am looking for by even posting this. I guess I just don’t want to feel so crazy all the time, and know that I am not alone!
Here is a list of my symptoms:
Lightheaded/Dizzy every single moment of every day
Pins and needles in hands and feet
Feel like I have muscle weakness, but tests say otherwise
Pain/heaviness in my legs (feels like one leg is shorter than the other – weird I know)
Muscular fasciculations all over my body, but mostly in lower legs
Feel like I am floating, or on a boat, constantly
Joint pain (mostly hips and knees)
Pressure/Fullness in both ears
Occasional tinnitus mostly in left ear
Blurry vision, after images, ocular auras, floaters, feel like eyes are being pushed out of my head