This is almost a lifetime of my experierce with ear and balance problems.
By the time I was five I knew I had a problem when I got sick on just about everything that moved.
Later in life when I started to find out why I was told: Psychosomatic,weak tibular system,larbenyth, hydrops, BPPV, or a mass in my head I could take my pick. Some doctors admitted they didn't know and Menieres was ruled out because was hearing was so good. Had a CT scam that showed no problem.
I had dizzy spells of and on through the years and then one day the world startd to roll and I ended up in the ER it was the worst feeling to be so sick. It continued off and on for about a month and then I could feel myself getting a little better day by day. I had to take dramamine before I started to vacuum or clean and I would hurry and do the laundry and get back to my chair. After eight months I went back to the doctor and asked wasn't this unusual to have it last this long and he said that no,it could take two to three years to get over it.
I have gone to the Neaurototogy Research center and went through all the test the results were maybe Hydrops and BPPV if the Hydrops got worse ther e was a operation they could do and I passed on the Epley not knowing much about it at the time but have learned since that it is very successful and Dr. Epleyhas a Omneax chair that allows rotation. My BPPV went away on its on in a month.
Years later the second visit to the center I was doing the Dix-Hallpike Posetional Nystagmus test to the right side and it made me so sick that they stoped the test and called off the rest of the test till later. I thought I was going to have to start paying rent in the parking lot finally I told my husband that we could go because I couldn't feel any sicker. When I went back to finish the tests I said that I didn't want to finish that test on the left side I didn't want to make my self that sick again. The Doctor said then we were wasting our time and that ended that.
In March I had a bad vertigo attack with pressure in my ears and my hearing went to an echo in my head and on the phone. Dr. sugggested to try Clarition it was five weeks before I felt good about driving or leaving the house. I still get waves of nausae and lightheadness and I asked the doctor why I felt so bad in the morning and he said he did't know.
One article I read from a doctor said that almost all panic and anxiety attacks
can be traced to inner ear problems. That explained why I had for years suffered from them.
I go to a eye Dr. that is a specialist in people with a balance problem and he said we should never wear bifocals.
I have never been on any medicine I just waited for my body to heal itself. I tried the transderm scop and after a few days my eyesite went blurry.
I do take ginger root capsules for nausae and wear sea bands when I travel.
I try to keep busy on the good days and on the bad days I read.
IT DOES GET BETTER !!!!!!!!
The only good that has come out of this is that you save a lot of money because you are too lightheaded to go to the mall and shop, and it allowed me to spend so much time at home with my six children who all turned out great.
I miss not being able to travel and there is nothing worse then having no control over your head when your body wants to do so much. I lite a candle and pray for all of us that we can have good health and get on with our life.
Am sorry to hear about your condition, however you have reached a place where we all know too well what this illness does to you. Panic Attacks/anxiety etc are the hallmarks.... A couple of questions:
If your symptoms have been going on for that many years on and off it sounds like you probably have a condition called migraine associated vertigo. This is also known as vestibular migraine. It is an atypical form of migraine where people can experience their symptoms only as dizziness and vertigo - not as headaches. I suffer from it.
It is only in the last few years that doctors are starting to be more knowledgeable about it - some specialists in the field are still behind - which is possibly why they missed it when you went to the neurotology centre. People used to be diagnosed with what was termed atypical menieres (menieres without hearing loss) now it is starting to be widely understood that this is actually vestibular migraine. The two conditions can mimic each other in many ways. A number of people on this board suffer from MAV - it can be controlled with a daily migraine preventative drug.
There is a big link between BPPV and MAV - often people can suffer from the two.
One of the big clues that migraine might be someone's problem is if they have always suffered from motion sickness.
There is a sticky post at the top of this board with lots of informative articles on MAV. I'd have a read, it might just be the answer to why you have been feeling so bad for so many years.
By the way hbep, why DO people with migraines get BPPV as well? My neurologist suggested trying the "repositioning movement" if our migraine med approach failed. Are we more prone to getting those rocks relocated for some reason?
This has pretty much gone on off and on my whole life over sixty years and there have been many good years but then a spell would pop up and the longest was a year before I felt back to normal.
