I totally understand the feeling when you are dealing with vertigo.
I had it for years.
It was misdiagnosed as labyrinthitis. I was told it was bppv. One of my physicians thought it was Miniere’s disease. Occasionally I would need to see a therapist who could competently do the Epley maneuver, which sometimes helped.
I tried all kinds of things. but generally, just got worse and worse as time went by.
Once when I went for a massage with a therapist, I had an unbelievable attack on the table. I was unable to drive home, had to call my husband to come for me. Once when I was having my teeth cleaned the same thing happened.
The troubling thing was that recovery took longer and longer. It got to the point where an attack put me in bed for several days at a time and needing help just to make it to the bathroom. Worse, after that I would stagger around like a drunk for several days after the worst of it had subsided. I was afraid to drive. Sometimes I was afraid to move.
I finally went to the best teaching hospital in the area, which was Froedtert Hospital, the Medical College of Wisconsin.
I went for a whole series of tests focusing on my ears. I needed to know one way or the other what was going on.
I had been avoiding these tests because I knew that they made you dizzy in order to find out what was causing it. And by that point MAKING myself dizzy was the last thing I wanted to do.
I had the tests. They made me dizzy. You did not get the results for a couple of weeks while the various docs involved studied the results.
I finally went in for the results. I was told that I had normal hearing for someone my age (late 60s at the time) and there was nothing wrong with my ears.
However the doctor I was speaking to said she believed strongly that what I had was vestibular migraine. However, she also warned me that there were many physicians out there who did not even believe in this diagnosis.
She sent me to a neurologist. He said, he didn’t really think anything was wrong, but perhaps I needed psychological testing.
In the mean time I was trying my best to work. Sometimes I was free of attacks for a while but they always came back and still seemed to be increasing in severity.
My husband and I are glass artists. We had an appointment to see a client about a commission and I knew her husband was a neurologist with a very good reputation.
after we discussed the potential work, I said to him… “Look I know it is a pain in the ass when someone has medical questions outside of the office”. He said, “Just ask me and I’ll let you know if it’s a pain”. I spoke to him about vestibular migraine and he said “I am very interested in that. Come to my office”.
I went. He definitely did not think it was some fabricated illness.
He said next time I had an attack to call him immediately because he thought he had a drug that would help.
I started to have an attack and called him. He called in a prescription for sumatriptan. I took it and it made me tired, but after I slept for a couple of hours, I awoke with no dizziness.
I read about the drug and what it does and I don’t want to take it lightly, but when I have an attack, it has worked every time.
Since then I have taken it 4 or 5 times, always with the same results.
It has been a relief for me to know that there IS something I can do for it.
I am also in counseling, with someone knowledgeable about migraine.
The first time I saw him, he said, “Well , look at you. You hold your shoulders and your neck and jaw so stiffly and tightly, it’s no wonder you have attacks.”
I thought he was nuts.But that evening I took a walk and somehow I was able to zero in on all the tension and knew he was right.
I also realized that I have insomnia, which makes all of my symptoms worse.
Same neurologist prescribed a tiny ammount of amytriptilline , really tiny. the pill is the size of a grain of rice… 10 mg. If I take it an hour before bed, it really helps me sleep.
So between the amy and the sumatriptan and learning to relax I am doing phenomenally well compared to where I was.
What I want to say is DO NOT GIVE UP. KEEP LOOKING FOR WHAT TRIGGERS YOUR ATTACKS AND WHAT MAKES THEM BETTER.
I really believe there can be a light at the end of the tunnel.