first time writing. my story goes aa…
about two years ago I woke up feeling really off balance for unexplained reasons. it was not a vertigo sensation, however more of a feeling of the ground moving under my feet feeling. it was scary. I felt I was going crazy. prior to that horrible morning, I was an dedicated runner, running about 3-5 miles a day before work, then going to the gym to lift weights, and heavy weights at that. I thought to my self maybe I caused an issue with my heart. So began my medical journey.
first I went to my general practice doctor, he did a full blood work test, came back everything was great. from there I decided to go to a cardiologist, they did an ekg, everything was fine the doctor said, ( that was my second ekg form a panic attack that caused me to go the emergency room earlier in that month, which was also fine). From there, I went to a ENT doc, they did a hearing test, and some positional head movements which didn’t cause me to feel any type of dizziness, so they said I was fine. at this point me hearing that im fine was starting to create more panic, because I wasn’t. lastly I went to a neurologist. the neuro said I was great but give a shot at cleaning your ear. I forgot to mention the entire time I was going through this I had a sensation of fullness in my right ear. I cleaned my ear, and after about two and a half months I was feeling GREAT!!!
However for two years I would receive small bouts of feeling off balance but it did not affect my everyday responsibilities so I dealt with it.
I went to San Fran and it resurfaced, I went to a doctor there and they did an ear arogation on my right ear and I seemed to be ok.
about three weeks after that point it came back with vengeance
I returned home back to Washington DC on sept 1,2016 and life has been hell. symptoms since then varied from my first attack. symptoms follow as-
- aurora vision changes lighting bolt in both eyes
- sensation of body feeling really heavy
- sensation of gravitational pull towards the ground espacially when awaking in the am
- tension/lightheadedness on back of neck and head with pressure around right ear
- sever leg weakness / jelly legs
- sometimes feel that I could pass out, however never happened ( thank you)
- sensation that the room is moving around me ( swaying sensation)
- occasional heart palpitations
- eye light sensativity/ eye heaviness
- heart racing sometimes for no reason
- sever anxiety and panic
- brain fog
all these symptoms has cause multiple emergency room visits. even been kept over night for observation. this has generated a new medical work up where I was did a stress test that came back great, heart echo came back great, MRI with contrast on brain and spine came back fine, ent did three test on of the test called e VNG test came back abnormal on right side. Lastly, I saw a neurologist at John Hopkins university that specializes in balance and dizziness and he diagnosed me with MAV. he also said the results of the VNG test did not tell him anything which was weird.
currently my biggest issue is trying to accept this diagnosis, its hard and scary to believe that this MAV can make you feel these ways, for me I feel near death. It has broken my spirt and mind. I don’t have a handle on it, don’t know what makes it worst? don’t know what makes it better? im mentally plagued with the mindset that one of these doctors missed something and my life is in jeopardy. However Ive been to a multitude of specialist and hospitals and they all say the same thing " we can’t find anything" and then they say " hows your mental health?"
thanks for lending me an ear