tldr: vertigo 6 months ago. Off balance episodes that come and go, feels uneven and wobbly. I've never actually fallen just wobbly). Ear fullness comes and goes. No diagnosis/resolution.


In August, I travelled for multiple weeks in NM and CO, staying at a higher altitude than I'm used to. Camped at 9k ft and went to the Alpine Visitor Center @ RMNP (11,700ft)

Less than a week from coming back, I started having vertigo episodes, which got better after seeing a PT.

• 8/9 - returned home
• 8/14 - vertigo episode 1
• 8/20 - vertigo episode 2
• 8/21 - saw PCP - thought it was eustachian tube dysfunction, sent me to ENT
• 8/24 - saw ENT - thinks it is BPPV (or similar), sent me to PT. He did see some nystagmus. Performed Epley.
• 9/7 - vertigo episode 3
• 9/8 - saw PT who did the Epley and also noticed nystagmus. Said the ENT performed the Epley on the wrong side.
• I did 6 sessions before he discharged me, as he no longer saw nystagmus, and thinks it has resolved. I had continued to complain that I was still not 100%, but he felt he couldn't help more.

I've continued to have strange symptoms. At times I I feel off balance, as if I am walking on a boat. I mentioned this to the PT during therapy, but he shrugged it off. His testing on me was eventually normal.

Long screen time periods can make this worse, so I have to take frequent breaks. It isn't always there, and stress/loud noises can make it worse. I have 3 young kids, so my tolerance for their noise has dropped dramatically.

My ears occasionally feel full. Chewing gum or eating will help with the fullness. Randomly, things can sound muffled. It's odd. Tinnitus randomly.

I got new glasses in January. My bloodwork on July 29 was perfect.

I'm seeing a neurologist who is doing the battery of tests. VNG, Posturography, Caloric, ECog, ABR, and hearing. Everything is coming back perfectly clean. We talked about an MRI, but she said, "I'm not concerned about anything like that." She did a full neuro eval, so it seems she's not concerned with stroke, etc.


The neurologist wants me to see their vestibular therapy specialist; the PT I saw was a normal PT with some vestibular training. But this lady only does vestibular therapy. And also the ear specialist at their office about the fullness.


PPPD? Vestibular migraines? TMJ? Cervicogenic-related?

My dentist does usually point out to me that I have signs of grinding my teeth. My Dad had a history of TMJ issues but didn't report dizziness

I do have a history of anxiety and am in therapy, but none of this presents how my anxiety normally does. I suppose PPPD could make sense given my history with anxiety.

I have been exercising more than I did before all this. Running, weightlifting, and trying to walk every day. Movement seems to make things better? Trying to get more frequent massages and correct my very poor forward-leaning posture.

* I've cut caffeine down to 8oz of coffee
* I've had maybe 10 beers in 6 months
* New glasses
* New pillow
* Increased exercise


Sorry, this is very long, but I'm getting frustrated.

How old are you? When they do Epleys, do you feel any relief? Any headache sensation accompanying the vertigo? Nausea to go with the dizziness? Or just off balance feeling? I get vestibular migraines and there is usually nausea to accompany the balance and dizziness for me. I have had them so bad I wind up laying in a ball next to the toilet and only moving my head to puke. If it is something like Menieres, some people get relief or at least minimize symptoms by minimizing sodium intake. If you are not getting relief from the Epleys and aren't dealing with a lot of sinus congestion that could be causing this, I would reconsider the MRI. Depending on your age group, something like MS really shouldn't be ruled out yet based on what you described so far. Not to frighten you, but nystagmus and balance issues can be very common first MS symptoms.

txags92 said:

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How old are you? When they do Epleys, do you feel any relief? Any headache sensation accompanying the vertigo? Nausea to go with the dizziness? Or just off balance feeling? I get vestibular migraines and there is usually nausea to accompany the balance and dizziness for me. I have had them so bad I wind up laying in a ball next to the toilet and only moving my head to puke. If it is something like Menieres, some people get relief or at least minimize symptoms by minimizing sodium intake. If you are not getting relief from the Epleys and aren't dealing with a lot of sinus congestion that could be causing this, I would reconsider the MRI. Depending on your age group, something like MS really shouldn't be ruled out yet based on what you described so far. Not to frighten you, but nystagmus and balance issues can be very common first MS symptoms.

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Sorry about your vestibular migraines, that rounds rough.

Im a male in my mid 30s.

I haven't had to do the Epley since August. When they did it then, it did resolve the full room spinning vertigo and nystagmus. I did get nausea pretty bad before they did the Epley. That room spinning Vertigo hasn't returned since then.

This dizziness now is more off balance with very minimal nausea, I've never thrown up from it. Seems to be worse when sitting still and looking at screens. Like at my desk looking at the monitors all day. I have to take a lot of breaks as the swaying feeling gets worse

I did have an MRI in 2021 due to recurring headaches that was clean, only abnormally was a mildly ectopic 5mm right cerebellar tonsil. VNG testing showed no nystagmus. My Optometrist did the dilation alternative was clean and didn't show signs of optic neuritis, etc.

I think I will push the neurologist on Monday for another one to rule out anything nefarious. Best case it'll give me peace of mind, worst case a diagnosis and direction.

If the Epley was effective, even short term, it would suggest against something like MS at least for the initial episodes. But can't hurt to be sure. MS normally shows up in people between about 20-40 years old and having symptoms come and go seemingly at random is one of the things that makes it hard to Dx.

Yeah, Epley stopped the room spinning Vertigo. But the rocking/swaying along with ear fullness comes and goes.

I'll push for the MRI Monday and ask about MS being a possibility

PPPD sounds like the most logical thing right now but I don't know.

https://vestibular.org/article/diagnosis-treatment/types-of-vestibular-disorders/persistent-postural-perceptual-dizziness/

Quote:

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PPPD typically starts shortly after an event that causes acute vertigo, unsteadiness, dizziness, or disruption of balance such as:

A peripheral or central vestibular disorder (e.g., BPPV, vestibular neuritis, Meniere's disease, stroke)


symptoms.
Symptoms are typically worse with:
Upright posture (standing or sitting upright)
Movement of the head or body, whether self-generated or caused by external forces (e.g. being in a moving vehicle)
Exposure to visually complex or motion-rich environments (e.g. busy patterns on floors or walls, graphics or images displayed on large screens)



Individuals with anxious, introverted temperaments or a pre-existing anxiety disorder may be predisposed to PPPD after a precipitating event;

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True Vestibular migraine usually have other longer history (often actual migraines or recurrence of vestibular issues).

If Epleys made a significant improvement and stopped the nystagmus, inner ear seems highly likely vs something else neurological. Did PT do any other maneuvers besides Epleys? Did they have you do regular habituation exercises in multiple positions (lying down, standing, leaning fwd)? If not you may still just need to kind of reset your system (oversimplifying but you get the idea). I would for sure find a more experienced PT with vestibular background first.

Also look up "The dizzy diet". Lots of foods on there she mentions can be very triggering that people would over think about. https://thedizzycook.com

what you have described are not MS "attacks"/flares

i would be careful suggesting PPPD, depending on your relationship with that Neuro and how that Neuro perceives things, as that disorder tends to be considered a functional disorder

while it sounds peripheral, i would push for an MRI, even at worst to re-eval your cerebellar ectopia (which can cause "dizziness" too)

**not medical advice**

I went to that PT for 5-6 session or so. He had me do things like Brandt Daroff, VOR (horizonal, vertical, moving head left to right w/ and w /out holding the pen), etc.

He definitely saw nystagmus in my first visit and was primarily focused on that, after he stopped seeing it consistently he discharged me. Basically said he couldn't help me with the continued balance stuff, used the term "hypo function" a few times.

I kept up with the exercises for a couple months but plateaued and admittedly stopped until starting them back to again recently. Maybe I need new exercises or just to keep up with them rigorously. Things have been very stressful at home with 3 young kids so the stress could be a factor in this odd balance being so persistent. No idea.


I do have an appointment in 2 weeks to start with the vestibular therapist at the neurologists office. It's the only kind of pt they do so I think I'll be in good hands. This place has Neurology, Otolaryngology and Otology/Neurotology. I'm hoping someone at this facility can get me back to normal.


And thanks, I'll check out the dizzy cook

OasisMan said:

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what you have described are not MS "attacks"/flares

i would be careful suggesting PPPD, depending on your relationship with that Neuro and how that Neuro perceives things, as that disorder tends to be considered a functional disorder

while it sounds peripheral, i would push for an MRI, even at worst to re-eval your cerebellar ectopia (which can cause "dizziness" too)

**not medical advice**

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Good call. Here is everything interesting from that last MRI. I'll push for a follow up one tomorrow.

Would the neurologist be offended if I bring up PPPD? I've only seen her twice but she hasn't brought up any diagnosis yet. Maybe she will tomorrow and her style is to wait until all the data is back before doing do. I'll remain patient (no pun intended)

Quote:

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The paranasal sinuses are free of air-fluid level. Incidentally noted is a bony spur of the posterior nasal suring approximately 5 mm right to left.


2. The right cerebellar tonsil is mildly ectopic, extending 4-5 mm below the level of the foramen magnum. This mild right cerebellar ectopia is thought to be on a developmental basis. There is not a frank Chiari l malformation, and there is no evidence of obstructive hydrocephalus.

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I'll get a copy of that one so they can compare

MRI ordered

She seemed to be going after a cause of the room spinning vertigo from August/September

She mentioned the possibility of Menieres but wasn't confident because my low frequency hearing tests in September and left week were fine.

And isn't concerned persistent dizziness, that falls more under the vestibular therapists umbrella.

Serious question…when these episodes have occurred, were you wearing the same shoes? I've had a somewhat similar experience, but it has always occurred when wearing the same dress shoes for work. Mine are worn, and I think that the gel of the sole has broken down in some areas, and it has caused "the boat affect." Maybe my situation is more serious and need to bring it up to my doc.

I had almost identical to you. Long journey with multiple MRI's and balance test with an otologist/neurologist.
Identical symptoms to yours. I ended up with doing a nerve study that revealed it was caused by some cervical problems in my neck.
Did PT and some specific vertigo exercises and it went away. From time to time it will reappear and I do the PT and vertigo exercises and it will go away.

Interesting.

Do you recall who ordered the nerve study and what it was called?

Did you have room spinning vertigo at any point?

I have a suspicion there may be back involvement. I work at the desk all day and have really poor posture. I've been working hard on correction exercises, stretches and catching myself for a month or so.

In the MRI waiting room now

That's an interesting theory. I do have insoles that are slightly worn but this particular issue happens with different shoes, sandals, barefoot, etc

I'll keep an eye out to see if it might be the one shoe making it worse

Yes sir. Total room spinning vertigo.
My neuro guy ordered the nerve test. Don't know what they called it.

Very interesting. I'll let my neuro do her thing but might bring it up later if the vestibular therapy doesn't get my anywhere. Glad to know I'm not alone though

MRI was mostly clean. Only a couple interesting things

* Left type 1 AICA vascular loop
* Similar caudal descent of the right cerebellar tonsil by 4 mm. Right cerebellar tonsil is mildly ectopic, as seen in the 2020 MRI

Going to ask neuro about the vascular loop at my follow-up. Might explain the tinnitus in my left ear

Off to vestibular therapy Tuesday. Hoping for some answers/explanation.

AgsMyDude said:

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MRI was mostly clean. Only a couple interesting things

* Left type 1 AICA vascular loop
* Similar caudal descent of the right cerebellar tonsil by 4 mm. Right cerebellar tonsil is mildly ectopic, as seen in the 2020 MRI

Going to ask neuro about the vascular loop at my follow-up. Might explain the tinnitus in my left ear

Off to vestibular therapy Tuesday. Hoping for some answers/explanation.

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Are they doing MRI of full brain or just sinuses?

txags92 said:

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AgsMyDude said:

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MRI was mostly clean. Only a couple interesting things

* Left type 1 AICA vascular loop
* Similar caudal descent of the right cerebellar tonsil by 4 mm. Right cerebellar tonsil is mildly ectopic, as seen in the 2020 MRI

Going to ask neuro about the vascular loop at my follow-up. Might explain the tinnitus in my left ear

Off to vestibular therapy Tuesday. Hoping for some answers/explanation.

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Are they doing MRI of full brain or just sinuses?

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It was full brain. Trapped in that tube for 45 min with a football helmet on sucked lol

TYPE OF EXAM: MRI BRAIN AND IACS W/W0


TECHNIQUE: Multisequence, multiplanar MRI of the brain including high resolution images of the
temporal bones was performed before and after intravenous administration of 15 mL MultiHance
contrast.


IMPRESSION:
No retrocochlear mass.
Left type 1 AICA vascular loop of uncertain clinical significance.
Similar low-lying right cerebellar tonsil.

Neuro did send me to the ENT in the office, who found my right eardrum is retracted. He thinks it's from eustachian tube dysfunction, starting with a short course of Afrin/Sudafed

Probably explains the chronic ear fullness on that side. And probably doesn't help any balance issues I've been having.