First of all, this community seems so lovely and supportive and I’m excited to chat with you all! Thank you so much for taking the time to read my story and for responding, if you choose to. I appreciate your time!
Now, here’s my deal:
Me: - 30-year-old woman, active, healthy.
Intermittent dizziness, tinnitus, light sensitivity (I cannot believe how bright my partner keeps his computer screen! It physically hurts my eyes to look at it.)
Occasional fatigue & brain fog.
Occasional headaches, but not too bad. Never seemed out of the ordinary to me, but I am very much the type of person to “head down, power through” physical discomfort (grew up without health insurance, so we never went to the doctor) so it never occurred to me that my pain might not be the norm.
I see stars when I look at my armpit to shave. (Saw someone else write that on this forum and I can’t tell you how good it made me feel, although I’m really sorry you’re experiencing this stuff as well! I’m not delighting in your misfortune, it just made me feel less alone :D)
Dizziness seems to act up the most right before I start my period. Any other women experiencing this? I know it can be due to hormonal changes. Just another perk of womanhood
Occasionally, after flying, especially an overnight flight when I don’t get great sleep, the ground feels like a trampoline when I walk. So bouncy, so dizzy!
No obvious hearing issues, though I haven’t had it tested.
Medications: None. I recently even stopped taking birth control. I think I might have fewer headaches since stopping it.
Onset: When I was 26, I was driving down a 2-lane road when suddenly my vision started to go dark from the corners inward and I felt like the car was flipping. I pulled over, thought, “Well, that was weird” and let my partner drive.
I never had another episode of my vision going dark, but I’ve never been able to drive after that. At first I thought it was panic attacks, but it isn’t. I did have panic issues for a while after the onset of these symptoms, but I finally got used to it and I know the difference now.
I seem to have trouble determining speeds and movement. You know the feeling you get when you’re at a stop light and the car next to you moves and you slam on your breaks because you think your car is rolling? That’s what driving is like for me now. (The only thing I’ve found that sounds like this is “Vertical Heterophoria”, but I have had an eye exam and they didn’t mention anything. I’m not sure if they tested for that, though.) It doesn’t affect me in the passenger seat because I don’t have to look at a specific point on the road.
Sometimes, I’ll suddenly notice that my body is extremely tense and I have to consciously relax my shoulders and face. I’m not sure if this is because I’m sensing movement/trying to stabilize without realizing it or if it’s just some other fun form of anxiety!
Medical: After the car episode, I went to an ENT who looked in my ear for 5 seconds, said I didn’t have an infection and referred me to a neurologist.
I went to a neurologist, had an MRI done and the results were normal. They referred me to an ophthalmologist.
Went to the ophthalmologist, they couldn’t find anything wrong with my vision and said I should go to a neuro-ophthalmologist.
That’s pretty much where my medical exploration of the issue ended. Healthcare here (US) is a pretty frustrating, expensive merry-go-round.
I don’t drive. All my symptoms are intermittent and, oddly, I actually have good balance. I do yoga and activities with no issues. But, some days I feel like I’m floating or my head feels full and I’m just no good for anything.
I find the loss of the ability to drive very frustrating although I’m lucky that it doesn’t affect my daily life very much. (Of course, if it weren’t for my partner I’d be absolutely screwed.)
Reading is one of my favorite things to do and nowadays I often have to lean my head back on something while I read because I feel like it’s slowly moving back and forth, almost like I’m a little too drunk to be reading.
I have had recent blood tests and checkups and everything comes back normal.
I reckon that’s about it! I hope that reading my symptoms might make someone else feel less alone. It certainly has been comforting to me to read some of your stories. I hope you’re all doing well this week and I wish you the best!
Anybody else see stars after looking sharp right or left?