So discouraged

Coping 🤦‍♀️
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You mentioned that you aren’t even sure that you have VM, did they do any testing for it? When I complained of dizziness, I was only having mild headaches and then only in the morning. But I would have one every day. I was dizzy about 60% of the time and bounced off the walls walking down a hallway. I had caught myself on the au to a fall several times because the dizziness and neuropathy were combining and confusing my brain. My brain had no idea when I had picked my feet up off the floor. As a result, I was literally tripping over my own feet.

This all started three years ago when I turned 66. But now that I look back at my life I see hints of it since I was 5. Severe car sickness, clumsiness that I never outgrew, inability to play catch because I couldn’t track the ball. There were probably other indicators and I just don’t remember them. In 1995 I lost 40% of the hearing and 100% of the comprehension in my left ear. It flicked off like you turn off a light. My mother tells me that I had Scarlett Fever when I was about 3. It’s possible that damage was done at that time and then something happened in ‘95 to finish my ear off. My vestibular system went wonky for no apparent reason. I’ve had many surgeries for various things since 2006 and been placed under general 5 times. In 2006 I went on heart lung bypass so that they could do triple bypass surgery. Any or all of those surgeries could have contributed.

I tell you all that to get to here. Every time something happened to me, I thought I would never adjust. And every time my brain did adjust. Your brain is an amazing computer. You just have to give it time.

There is also testing that your ENT can arrange that will give them a very good idea if you really have a vestibular disorder. My testing took 3 hours and at the end, the doctor could say with certainty that my vestibular system was causing problems.

The testing they did was first a hearing test. Then they ran cold water in both ears while I wore a helmet that measured eye movement. They then showed some dots inside the helmet to measure my responses. Then finally, they had me look at an LED bar that ran a pattern of LED light back and forth.

But just knowing it is a vestibular disorder is part of the solution. You will need to do Vestibular Rehab Therapy to help you retrain your brain. Prescriptions to help calm the symptoms and in your case the glasses.

As daunting as all this sounds, it’s not insurmountable. Lots of people go through this same process and manage to live reasonably normal lives.

Asking questions is part of the process. You have to be your own advocate, because you aren’t likely to find a doctor these days that will advocate for you. Don’t take everything they say as gospel. Push them to get testing so they can make a determination, and then push on them for resolution.

You’ve got this, you can do it.

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23

Thank you

24

If it settles then it should prove you need the prisms.

Vertigo of Oculomotor origin

Might be worth a scan read of the paper on this thread. See if anything resonates. Might give you more of a clue. @TexOkie too sounds as if you might have had some deficiency of spatial awareness from five much like me.

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@Onandon03 , yes to the spatial awareness. I just didn’t realize it until the last couple of years. One thing I keep thinking of was why, when I try to play catch, do I lose visual lock on the ball? I think about it and originally I thought it was due to the ball passing across a horizontal line, such as a fence, the horizon, etc. but now I realize it is when I have to tip my head back a little or move quickly from side to side. Any quick head movement causes me to lose visual lock on the ball. Then thee is the clumsiness. Normally you grow out of that in your late teens, early twenties. But for me it only got worse.

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I’m so sorry that you’re having such a hard time and know how you feel. Your symptoms sound a lot like mine did and it was definitely chronic migraine with a vestibular component. Like many here, I understand how your quality of life is compromised by this condition and these symptoms and I really feel for you.

The good news is there is action you can take. You are on a very low dose of nortryptyline—for some it’s enough, but for others, a much higher dose is used to achieve symptom control. Or, a different medication may be needed. I switched from nortryptyline to venlafaxine when I wasn’t getting adequate results with nort and did better with it. Then, after seeing a couple of different neurologists, I also added Aimovig and topiramate, and things improved further.

There is also vestibular therapy and vision therapy (I did a program of vision therapy and was provided with the type of prism glasses you mention).

I know that experiencing these symptoms is very fatiguing, and that pursuing new treatment paths also takes energy that you may not feel you have, especially when some avenues don’t end up working. But when you can, take action and advocate for yourself. Sounds like you’ve gotten referrals on the neurologist front. I personally found that a neurologust who specialized in chronic pain was most helpful for me—but all you need is someone who will be an ally for you.

And—you may want to consider seeking out therapy to help you adjust to how things are now. It is really difficult to accept the changes in your life, but learning to be content doesn’t mean you’ve given up on things improving, and you can learn how to make your life less of an emotional struggle and find more acceptance of your day to day with some guidance. A therapist who specializes in chronic conditions would be helpful here.

Wishing you the best, and please know we’ve all been there, and that in a majority of cases, with treatment this condition does improve.

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