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I'm a dizzy broad and I'd love to hear your thoughts!

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.

Symptoms:

  • 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 :laughing:

  • 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. :expressionless:

That’s pretty much where my medical exploration of the issue ended. Healthcare here (US) is a pretty frustrating, expensive merry-go-round.

Current situation:.

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?

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hi there. Pleased you liked our set up so much you decided to join us. Really appreciate your humour. Such an attitude will carry you far. You will have noticed I linked in the other thread you referred to for the sake of future comers. You did well to find that. I’ve never gone across it before. Neither have I actually experienced the same either though I’ve enough enigmas of my own not to be miffed at the exclusion from that one please rest assured😁.

Not really sure exactly what I could say to help you in your dilemma. You seem to be coping just fine as it is. And appear to have a good handle on the elements of the condition. Btw exacerbated symptoms around menses is one if the commonest of symptoms. Just try interrogating the archive via the Search facility. You’ve certainly done the trawl of specialists. I’m surprised nobody yet mentioned VM in your presence. A neuro-otologist might be handy. That might help you get a proper diagnosis because that’s what you are currently lacking.

As you will already appreciate we are only a support group comprising fellow sufferers and cannot diagnose but to me the symptoms mentioned aren’t typical common VM symptoms on their own. Please check out the Welcome and Wiki sections where you will find a typical symptom list. That said symptoms really do vary so that rules nothing out.

From my own personal experience and totally putting aside that darkening vision experience I can pick out a good few references from your text which would make me think you do indeed suffer from some type of eye misalignment, exophoria, heterophoria but confusionly you’ve seen several specialists who would surely have picked such a condition up. A disproportionately high number of migraineurs do have a misalignment. Connections have yet to be investigated by the experts it seems.

It’s really great that you are coping at present. Only trouble is if it happens to be VM at the root of your difficulties it does tend to become increasingly worse as time goes on and the longer you have it the more difficult it is to get back under control. It’s best treated whilst still episodic but does have a tendency to escalate over time towards chronic and that’s an entirely different ball game. Believe me I’ve been there. So a Neuro-otologist maybe as a next step. Cheers.

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Hi DizzyBroad, Nice to meet you!
There are several points in your intro that resonated with me, but here are a couple that I will point out:

My husbands phone, Kindle and iPad screens are the same to my sensitive eyes! Just painful to me! Photophobia in conjunction with vestibular issues seem to be a telling collection of symptoms many times for physicians who specialize in VM.

Me! :raised_hand:t4: It wasn’t until these past few years that I realize “powering through” is not normal. I had no idea!

Same! Can happen anytime I turn my head sharply to look down and angle left or right. I do not know if that is VM related, neck related or completely normal honestly. I just don’t move those directions for the life of me now.

As Helen mentioned, it seems like a Neuro-otologist may be a logical next step for you. This is the type of specialist that finally gave me my diagnosis after a year of having more questions than answers.
Best wishes!
Renee’

Not being one to shave his arm pit, I don’t quite get the whole angle the head down thing. I would look in the mirror to see what I was doing and avoid the strain on my neck.

Regarding screens, I never quite got why everyone complains about screen brightness until the other day when my wife remarked about how dim my iPad was. Then I remembered that when I first got it, I turned it way down. The same with my phone, laptop and monitor. I keep the shades drawn in my office and the lights off except for the cubicle lights. Everyone asks me if I’m a vampire. I always answer yes with my best Oklahoma/Texas/Transylvania accent. They just walk away shaking their head.

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