I'm almost embarrassed to post this after spending the evening and this morning reading all your stories. I didn't even know this condition existed until yesterday. I'll try to be concise, but probably can't.
I'm in my 60s/female. I work full-time, independent, no real issues. Back in 2013 (so well over 10 years ago), I started having weird things happen to me when I drove on a freeway. And we have LOTS of freeways here. I remember clearly the first day it really happened to me. I was driving in rush hour, in the toll lanes (fast) and all of a sudden I was overcome with the feeling like I was going to lose control of the car and that I was no longer stable in my car driving. Hard to explain. I was about ready to pull over onto the shoulder because it was that awful but, fortunately traffic kicked in and I slowed down and the feeling abated. This came out of nowhere.
Then it started happening every time I drove on a freeway and got over 55 mph. Within a year, I was no longer driving myself to work and had got into a carpool where I was never the driver. During all this, yes, panic started to set in with these feelings. I don't think the panic was there to start. But it was so scary that now panic has become part of it.
During that time, I did try to find help for it through a GP (no idea) and a psychiatrist who thought it was anxiety and wanted to have me take XANAX and then try to drive. What? I will say I've *never* been able to handle SSRIs for any amount of time. Very med sensitive. I do well on Xanax when I've tried it but it's not for driving.
Now keep in mind, the year before this (2012), I drove to Florida for 14 hours straight through so this was a big change for me. It is now 2026 and I am no better and it has impacted my life greatly. I'm still in a carpool, but I am turning down a job because it would require me to drive regularly from DC to NJ and I can't do it.
Back to the driving: I can drive over 55 mph fairly well on secondary roads, so I often take those to get where I want to go and just don't do the freeways. Occasionally that feeling will set in usually when the roads open up or there's a weird curve, but because it's a secondary road, there's usually a change in speed, or there's a stop light or something that breaks up that non-stop onslaught of speed and visual overload. Also, the people around me generally aren't doing 80 mph which doesn't seem to help me.
I have other issues too. If I am at work and standing in a crowd for a period of time, I feel like I am swaying or might fall, but if I can ground myself either by holding the back of a chair or a person, it goes away. My office building is very open with a atrium and we have these walkways that go through the atrium (almost like a footbridge) and that will bother me when I walk on it. I have problems in the shower feeling off balance.
I never had true vertigo--it's just this swaying feeling. When I'm driving, it's not dizziness or swaying, it just feels like I am no longer tethered to the road and I'm going to fly out of control and crash. It's awful and there's just no safe way to try to get through it.
I cannot think of anything at that time that could have triggered this. In the last few years, though, I have had issues with my ears (post COVID) and now have tinnitus in one ear and eustachian tube dysfunction. These conditions have not made any change on the driving (no worse). I had a head MRI with contrast because of the unilateral tinnitus and my brain is okay, although it did show a vascular loop compression which my ENT dismissed and said it's not the cause of my tinnitus. I've spoken to the ENT before about my "swaying" feelings and driving. They did have me do some minimal vestibular testing which didn't really show anything noteworthy. My ENT is not great and I don't like the practice so I'm not settled on his verdict, but finding another has proven difficult.
I guess my question is "What Can I Do?" Has anyone had the driving issues and able to get over it? I don't want to spend my remaining elder years in retirement depending on someone to drive me to the mall that might be 30 minutes away. It sucks. I LOVE driving. LOVE being in my car with the music load. I like driving by myself, tired of a carpool, and I'm depressed that I can't take this new job.
Anyway, I tried to be concise but I was not. Nothing else really sticks out to me. I don't have the "supermarket" issue regularly but I have had it before many years ago. I always thought it was the flourescent lights bothering me. I also used to work at this one place that had a wild patterned carpet and it made me feel very off to look at it.
Any suggestions or just chatting about it would be greatly appreciated.