Anyone here deal with vertigo? Either as a diagnosis or as a symptom?

I’m currently dealing with a bunch of symptoms and a tentative diagnosis of benign positional vertigo. However, I have a bunch of other outlier symptoms that my PCP isn’t entirely convinced it’s BPV or just BPV. (It could also be that I’m dealing with new migraine symptoms or vestibular migraines). Anyway, I’m set for an MRI next Friday to hopefully rule out more scary things. I’ve had extensive bloodwork and everything has come back well within normal ranges (I’ve been tested for every autoimmune disease my PCP could find and had too many vials drawn).

Basically, I deal with positional vertigo. Head movements trigger dizziness. Sitting/standing typically make me dizzy but on a normal day, once I recalibrate to my surroundings, I feel OK. Now, I’m just feeling dizzy all the time. Either lost in space or like I’m on a rocking boat. I always suffer from motion sickness in cars and that is significantly worse. Some vasovagal episodes (I have a history of this dating back to when I was a kid) but I can feel the warning signs and keep myself from passing out. Blood pressure is lower laying down (normal/below normal) and will jump up when sitting/standing.

In addition, I’m exhausted and suffering from brain fog. Plus sensitive to temperatures. This all could be tied to the vertigo or migraines, but… The last few days have been bad. I have PT today so maybe that will help. And as I said, an MRI next week. I’ve just never dealt with vertigo this bad before. Just filling hay boxes and cleaning stalls yesterday was a struggle.

Thanks for letting me vent!

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I get vertigo. I also have migraines but according to my neurologist, the vertigo is not associated with the migraines.

He generally recommends that I try the Epley maneuver for my vertigo. There are other exercises to try, as well: It might be helpful to Google videos to see how to perform the exercises.

Vertigo is miserable. I hope you find a simple solution!

Well, according to the physical therapist, my vertigo is not bpv and is likely a symptom vs a diagnosis. We’re going to do a lot of physical therapy to try a retrain my brain and improve my tolerance, but it’s not going to be a one and done shifting of crystals like everyone had hoped. Leave it to me to be difficult!

It looks like I have tracking issues too? My eyes track without issue but not smoothly. This might be related to past concussions. They’re going to work on that as well and see if that helps the brain fog and focus issues. All of this is assuming that the MRI doesn’t reveal anything more concerning.

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I sympathize with you. I went thru this from December to early April. Lots of testing. Some of the PT test nearly put me on the floor. Getting thru chores was exhausting when normally not a big deal. ENT suspects vestibular migraine, although the whole thing did start as BPPV. At my last appt he suggested I visit a neurologist but I haven’t done that yet.
I’ve never had migraines before so ? no experience to compare it with.
Is it possibly Meniere’s?

Interesting! I’ve always had dizziness when I got up at night or first thing in the morning but generally when I got used to standing/sitting, I’d be fine. January of this year I had this awful “lost in space” feel which was different than the typical boat rocking vertigo. It lasted a month before it generally resolved. That’s back full force plus the boat rocking plus the position changing (standing to laying down is fine but laying to standing isn’t).

I see my regular neurologist and my neurotologist next month so I’ll be talking to both to see their thoughts. It’s just rough especially when it seemingly comes out of nowhere?

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Probably not much help but you have my full sympathy and commiseration.

Mine is relatively mild but triggered by the weather. If we experience a number of overcast days with dense clouds but little rain, it really screws with my head. I’ve been feeling crappy the last two weeks because of it. No extreme dizziness but that awful feeling that the world moves sideways temporarily if I move my head too fast. I also get the lost in space feeling which is so frustrating because it makes me very anxious when driving. I am stressed when having to maneuver around a parking lot because I think there’s room but I don’t entirely trust my brain that we’re in the exact spot it says I am. I’m also exhausted on top of all that!

Had a really crappy ride yesterday in a clinic and was beating myself up. I know it’s just the vertigo but it’s annoying. Woke up feeling much better today and rode much better!

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@pompeiii have you had your B12 levels checked? All your symptoms sound like a B12 deficiency. Or folic acid deficiency. I’m doing a lot of research on it lately because I was just diagnosed. If you do get it tested. you’re supposed to be off all B12 vitamins for two weeks prior.

Thanks for the suggestion. Levels were checked in January but not recently.

The neurologist has actually diagnosed it as vestibular migraines which makes sense. It’s just annoying and frustrating! I just received a new round of Botox so we’re going to see if that helps before we try anything else. I see my other neurologist next week so I’ll get his take as well.

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Pompeiii, I’m really curious about this. I have disorientation while driving. It’s not dizziness at all- it’s a complete disorientation. Going up a hill, I sometimes feel my truck is going to tip over backwards. Around corners, I feel it’s going to fly off of the road. It happens above 35mph and not always, so I, too, get anxious when driving. Is this anything like you experience? I’ve seen several neurologists/specialists w no diagnosis. Thank you

I have had labrynthitis a couple of times and my sister and mother both get bouts of either labrynthitis or vestibular neuritis, both of which cause severe vertigo. It’s awful. I was unable to keep my eyes open without throwing up and falling over, and also had hearing disturbances. There are several things that can help, depending if they find a cause and give you a more specific diagnosis.

Out of curiosity, have you had Covid? I just just speaking to a friend last week who had Covid several months ago and has been dealing with vertigo ever since.

I was diagnosed about 6 years ago with Menaire’s Disease. It causes vertigo, hearing loss, tinnitus and some other things that I can’t remember.

Sometimes my vertigo is like a gentle rocking and other times it is room spinning, and other times it just feels as if I am light headed at the very top of my head. I have had two sudden vertigo attacks that have caused me to fall.

My hearing is pretty bad and had gotten to the point where I couldn’t hear “normal” level speech and sounders were either not registering at all or were muffled. I was instructed to use hearing aides by the audiologist 6 years ago. I couldn’t pay that much out of pocket and I never got them.

But my hearing kept getting worse and people masked up were impossible. I would sit in staffings and watch everyone else for their reactions so I would know how I should proceed. Questions asked directly of me I would have to have them repeated, often more than three or four times before I could get enough meaning to answer. I went back to an audiologist and my hearing had gone from mild-moderate to moderate-profound. I was completely missing so much speech that it was no wonder I was having such a hard time.

The hearing aides I bought (a friend paid for them and I am paying her back in monthly payments) have been life changing. I go in for my second fitting next week, just to tweak anything that needs it.

I hope you don’t have Menaire’s. It can be hard to deal with.

Sorry for the delayed reply. I’ve been off the forum a bit. I do experience a little of that as a passenger. Even at slower speeds, it definitely feels like we’re flying on the roads. As the driver, it’s not as bad because I’m hyper-focused on where I’m going. So, I’d say mostly just for me as a passenger during bad bouts.

For me, the vestibular migraine diagnosis actually came from a neurotologist /otolaryngologist who specializes in vertigo. I actually see him for my botox but he’s been incredibly helpful for migraines as a whole (revamping medication and all that). It wouldn’t hurt to see if there is a good ENT near you who specializes in vertigo. I was having a full out attack when I saw him (complete with transient aphasia) so he saw the full picture, and even though he had my diagnosis in about 30 seconds, still listened to every jumbled word that I tried to get out. I have to say, the botox has helped dramatically. I just hope that when it wears off, the vertigo and brain fog don’t get bad again.

Everyone keeps asking me this, but nope. I’m just a case study for all sorts of different types of migraine.

Thankfully no. Not Manaire’s. Very happy about this!