This is a great thread, and I really appreciate reading what all of you are going through.
My symptoms started June 6th (almost 5 months ago). I was getting ready to go on vacation, and started to get a spinning feeling in the evening. I thought I was just tired, and went to bed. Woke up with the room spinning so hard I couldn't move. Wound up in the ER.
From there I was on a steroid / meclazine / valium / and anti-nasuea drug I can't remember cocktail for a few days until I could get in to see my ENT. I also ended up with severe diplopia (double vision). It took me a couple of days until I could get up and walk unassisted to the kitchen or bathroom. I was in a cycle of taking meds, crashing out, waking up, eating enough so I could take my meds, then crashing out again.
I saw the ENT, and he told me I could either stay on the meds and not get any better, or drop all meds and "face this head on" and that after a couple of weeks of stumbling into things I might get better.
He also sent me to a Neurologist, who was very concerned about my diplopia. I had my first MRI, and it came back clear.
A month passed, and no relief in symptoms. Dizzy in the 7 range, 24 x 7. Brain fog in the same category. The neck pain also set in at this time.
I went back to the ENT and had the full work up. He sent me to a Vestibular Rehab Therapist who I worked with 3 days a week for 2 months. She put me back together so I could function. When I walked in, I couldn't stand in place with my eyes closed, I would fall immediately. I would never have passed a field sobriety test since I couldn't walk heel-to-toe for more than two steps. Anyway, after the 2 months I could stand for 30 seconds with my eyes closed and walk around pretty well. During this period, my Neurologist sent me to have my carotid arteries scoped to check the bloodflow to my brain, which came back fine, as well as an imaging EKG, which was also good.
Which brings us to the last two months. My symptoms have decreased to about a 4 out of 10 across the board. I am now able to put in a full day at work (I was out of work 100% for the first month, then started doing mornings at the office, home at lunch, crash out for the afternoon, then do some more work in the evenings). My diplopia has pretty much cleared up.
My biggest problem is I can't drive. Being the passenger in a car doesn't bother me, but when I get the wheel in my hands my brian seems to know I now need to control everything, and it starts to overload real fast. I've tried a couple of times in a parking lot, but even with no other cars or traffic lights to deal with I am drained after 10 minutes and have to go lie down. This sucks. I like my car and I like to drive.
I really miss my evenings as well. When I get home from work I'm toast. The dizzyness and brain fog have increased, and all I want to do is eat and vegetate. I can't fall asleep, though, so I just have several hours of being out of it every night.
I have been off of all meds except my hypertension prescription and daily aspirin (which was upped to 325mg by my Neurologist). I do keep Valium and meclazine for when I travel (I've had to fly three times since I got this) so I dope up just before getting on the plane, and arrive feeling ok at the other end.
The most honest appraisal of this entire condition was one I got from my Rehabilitation Therapist. I asked her if I might wake up some morning and this would all be gone.
She told me: "We get people in here all the time with a condition like a broken arm, where it has been in a cast and due to atrophy it is now at 50% of its original stregnth and mobility. Through weight training and stretching, we can get this back to 100% in most cases. You walked in with a 50% decrease in function of your vestibular system. If we can get this up to 75%, we will count that as a successful outcome."
I went home and cried. I couldn't fault her for being honest, she's worked with vestibular cases for 20 years. I just want a road map back to 100%, and I haven't had any of my docs give me one.
Anyway, over the past month I've gone back to the ENT, and had two steroid injections direct into my bad inner ear. No help, just really a scary procedure. I have also tried accupuncture with some positive results.
The bottom line I have learned from this is we can't get any kind of definitive diagnosis as to what triggers this (I didn't have a cold, flu, a flu shot, caffeine, or alcohol before mine started) and we can't get any definitive answer as to when it will end. I do know this has brought my family and I a lot closer, and I have a lot of friends that show their concern in many thoughtful ways. We all need to take this a day at a time and look for the good things, which are abundant.
Sorry for the long post, but it feels good to get this out there.
Good luck, and God bless you all,