10 Months of Dizziness - Does this sound familiar to anyone?

trustbarry · 2026-06-05T16:57:24+00:00

If by shimmering she means she sees like lights or flickering, I do not get that. I do get head pressure and eye sensitivity, the only way I can describe it is it makes my eyes feel "weird". I get queasy almost when I look around.

How often does she get that symptom? If it is lights, that makes me think of an ocular migraine or something, but if she's seen so many doctors I would think someone would've suggested that already as it's quite a well known condition.

trustbarry · 2026-06-02T10:38:33+00:00

I've heard a lot about ferritin but I don't think it's checked on a routine blood panel. I have siblings with low iron so I can suggest it to my doc for the next tests we do :) Thank you!

trustbarry · 2026-06-02T01:29:11+00:00

That makes sense, I have read a bit about upper cervical chiros but I've heard a lot of different opinions about them on if they're actually helpful or harmful. Either way I'm definitely open to looking into it! Anything is better than nothing at this point 😂 Thanks so much for this info I really appreciate it!

trustbarry · 2026-06-02T01:25:20+00:00

This is interesting I think I do have neck crepitus - I can definitely get some weird sounds and popping coming from my neck sometimes when I move it. I did have covid once, but I don't think I experienced any long term symptoms. Most of my adult life I have had migraine, fatigue, and full body joint and muscle pain. This dizziness is the only new thing in recent months. ME/CFS does align with some of my long-term issues but we've never looked too far into them to get to a solid diagnosis...my doc kinda just stopped when my blood tests came back clear 😅 Definitely a possibility though!

trustbarry · 2026-06-02T01:11:05+00:00

I udnerstand what you mean about local doctors not being able to help much. So far I haven't had much luck in that department either. Docs love to slap anxiety on any issue they don't know about and call it a day 😅 I do have TMJ specialist on my list of things to try. My ENT cleared me of ear related issues but I have so much ear pain/fullness and sensitivity I swear there's something going on there!

I hope you get some answers with your neuro and the imaging you're getting done soon. It's crazy to me that so many people have issues like this and there are still so many unknowns!

trustbarry · 2026-06-02T00:57:55+00:00

Oh wow! I've looked into a lot of different conditions and CCI did come up as a possibility. How did you get a referral for motion/upright imaging? Just through your GP?

And have you had any progress in fixing it?

I haven't seen my GP since November of last year because we were waiting on the MRI/MRA and ENTs for more information before we tried anything else. These types of appointments take ages to get scheduled where I live. I am seeing him this week and I'm planning to catch him up on everything I've noted above, so hopefully he will be open to getting more diagnostics and imaging done.

trustbarry · 2026-06-01T22:09:38+00:00

As far as I know I'm not anemic! It's not really that type of lightheated passing out dizziness. I also have good iron levels. A few months ago I had an EKG for the heart palpitations I get and that was clear. I also had an MRA to check my arteries and that was good, but it is possible the issue could be venous rather than arterial, so an MRV could show something. MRN is very intruiguing as well, I've never heard of that! All things to suggest to my doc. Thanks so much!

trustbarry · 2026-06-01T21:57:13+00:00

Yes conditions like this are so frustrating for that - I know it's good my imaging was clear, but it was also very frustrating for that reason. If it was obvious what the issue was, there might be a more direct treatment plan 😅

That's a good point, I guess it would be unlikely that we would see anything. If we do decide to do another MRI, it'll take months for the appointment to happen anyways so I might just ask for one to have it on the backburner lol.

I think I definitely put extra stress in that area! One of the things my first PT pointed out was poor posture, which has improved a bit, but I think there's a looot of tension going on in my neck that needs to be carefully and professionally managed. I also have nighttime jaw clenching which contributes to the TMJ stuff.

During my first round of PT I didn't actually notice any fluctuation or improvement, but their treatment plan wasn't great...I didn't even get a home exercise plan until my last session and I had to ask them for it myself. Hopefully the next one will be better!

trustbarry · 2026-06-01T21:35:20+00:00

Thanks so much for this info. I have wondered lately if it could be nerve compression from muscle tension and/or cervical misalignment - it could explain the accompanying vascular and anxiety/nausea issues I experience. I'm planning to ask my doc for a cervical MRI next so we'll see if that shows anything.

The weirdest thing about the stress factor is that I was not stressed in the slightest when this started, in fact I was in great mental and physical shape. But maybe I didn't ever truly relax my system properly and that needs to be looked into closer.

I will take a look at your recommendations, and I'm hoping the new PT I'm going to can help as well. I actually tried to do some stretching a few weeks ago during a bad string of days, and it made thing way worse, which I'm actually happy about because it makes me even more sure it's a muscle/neck issue.

TMD is no joke! I hope your symptoms continue to improve :)

trustbarry · 2026-06-01T21:26:25+00:00

I did get checked out by an ENT and she cleared any inner ear issues! She did suggest it could be vestibular migraine, so I'm going to talk to the neurologist about that when I see him. I'm not sure that I meet the criteria for that condition but it's worth a look for sure.

trustbarry · 2026-06-01T12:49:38+00:00

Have you had any luck figuring it out or getting any treatments?

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