Posted , 21 users are following.
Hey guys, so this is my story:
My name is Brittany. I'm 28 years old and since the beginning of November I have been experiencing this chronic disabling rocking/swaying dizziness (over 2 months). I had gone on vacation with my friends and sister at the end of October to New York. I had also gotten sick (upper respiratory infection) while in New York and when I came back home I felt this rocking sensation. At first I thought it was just my body getting used to being back on land after being on subways for a whole week and the airplane, but it continued. Then I thought it was because of the virus I had and it had affected my inner ear and it would go away soon, but it persisted. After about a month of this rocking on a boat sensation, I felt the symptoms get worse as I was beginning to recognize that this was not normal and it is something I need to go to the doctor for. I ended up going to the ER first as I became so incredibly overwhelmed with how uncomfortable I was feeling over this dizziness and went on state disability as I could no longer work with this condition without getting this treated. It was affecting me not only physically, but mentally. From there, I saw numerous specialists/doctors: Neurologists, ENTs, Audiologist, Physical medicine dr., Chiropractor, Acupuncturist. It didn't help that when my dad drove me to my first neurologist appt we ended up in a bad car accident which definitely affected my dizziness and my ability to progress from this condition quicker. The doctors have performed numerous tests to rule out major illnesses including checking my vitals, performing a ct scan, mri (with and without contrast), audiologist testing for pressure/fluid/hearing loss. They have all come back normal which is great! I mean I am so incredibly relieved because I was for a while thinking I had a tumor or ms or menieres.
However, the doctors have not officially diagnosed me conclusively. I have had them say it may be vestibular neuritis, MAV/vestibular migraine, mal de debarquement syndrome (which I have read online that people said some doctors think mal de barquement syndrome and MAV are related-not positive on that). I have also read about people with BPPV and PPPD having similar symptoms as I and am uncertain what will work as far as treatment to get rid of this awful dizziness. They said it could be vestibular neuritis because I had a virus when I came back from New york. It could be MAV because I have history of having a migraine (also runs in the family) and I had also started birth control during my trip to New york which apparently migraines can be triggered by hormone level changes. It could be mal de debarquement syndrome because I was on the subways and long airplane ride. It would be a combination of these with also BPPV and PPPD.
-swaying/rocking sensation (body and mind) when sitting
-Swaying/rocking sensation gets much worse when I stand up, walk around, am in the dark/have eyes closed, am anxious, or very tired
-when I am extremely anxious/crying/didn't sleep at all because of this condition, my rocking can turn very violent and the symptoms are much worse which can at times make it so difficult for me to stand for long periods of time.
-It feels as if I am walking on a trampoline everywhere I go
-the symptoms fluctuate throughout the day
-the more visual stimuli around the easier it is for me to feel more off balance
-my vision feels like its playing catch up
-I feel unbalanced as if I am slightly drunk and sometimes have to hold onto the walls to guide me especially at night
-I feel as if the symptoms disappear when I am in the car (the car movement in a way cancels out the movement I feel in my head/body-not sure if its because I am focused on driving or what)
-it feels as if my body is a buoy rocking in water and my brain is mush/jello sloshing around in my head. It also feels as if my brain is being pulled in different directions because of the rocking sensation-making it more difficult to focus
-I am more forgetful/having a harder time concentrating/lose train of thought easily
-I am much more anxious/breaking down everyday at some point over this as it is extremely difficult to get throughout the day ignoring the symptoms-its exhausting.
My doctors are encouraging me to do vestibular rehab and then look into medications so that is what I plan on doing right now. I have been doing my own vestibular exercises at home regularly morning and night as well as staying active going on walks everyday (they say even though it feels worse walking and moving so much, I need to keep moving so my brain can learn to compensate and not slow down my progress). I am in the midst of starting vestibular rehab therapy at the doctor next week and I am hoping they will have something to give me that will help this awful debilitating dizziness disappear. After that I will look into different medications to see if the symptoms will subside.
I am so desperate to cure whatever is causing this horrible rocking dizziness. I have also been trying to do different maneuvers for BPPV just in case if that is part of the problem but have had no success with it going away...If anyone has any advice or has anything similar to what I am experiencing please message me. I appreciate any suggestions on any more tests I could run to get a more definitive diagnosis, any vestibular specialists you guys recommend me seeing through kaiser or out of kaiser, any techniques, supplements, medications. Any helpful information would be greatly appreciated. Thank you and I will pray that you all are soon on your way to full recovery.
0 likes, 30 replies