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Constant Dizziness
Hi everyone,
I’m hoping to hear from anyone who might be experiencing the same thing I am or any suggestions for what I might have.
I am 23 years old and I have been experiencing constant dizziness for almost 2 years now. And I mean 24/7 not just “spells”. It started when I was at dinner on vacation and got a sudden wave of dizziness that lasted for 24 hours. It then went away and came back 2 days later this time lasting a couple of days. I then passed out at a funeral and the dizziness came back again even worse and I ended up in the ER where they told me everything looked normal. It went away again for 6 months and then a day after Thanksgiving the same thing happened. I got a sudden wave of dizziness but this time it has now lasted almost 2 years. I have seen ENT doctors, physical therapists, neurologists, and cardiologists and no one can give me an answer. I feel it constantly but some days are worse than others. Recently I have found that when I get a huge wave of dizziness to the point that I feel like I’m going to pass out I then get an overwhelming sense of tiredness and have to take a nap for a couple of hours after it happens. I have experienced vertigo before and this is not what it feels like. It does not feel like the room is spinning. The only way I can explain it is that it feels like my brain is spinning. The ENT doctors did not find anything wrong with my ears and the cardiologist said my heart has no problems at all either. I have also gotten an MRI done which also showed nothing wrong. I’m desperate for any answers or suggestions someone might have.
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Welcome @dprzybyl, I was not familiar with Nystagmus and had to look it up. @strokesurvivordynamo posted in another discussion asking @maryar if they had tried Binocular Vision Therapy for their vision Nystagmus. Here is some information on vision therapy that may be helpful - 9 Eye Conditions Improved With Vision Therapy: https://www.optometrists.org/vision-therapy/guide-to-vision-therapy/9-eye-conditions-improved-with-vision-therapy/
It sounds like you have seen many doctors and specialists. Have you done any research on your condition?
Yes I have researched this for years. I have done physical therapy specifically for this and am currently doing physical therapy at UCSF.
Many thanks for the link. I will read it carefully
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1 ReactionHave they ruled out BPPV? Cervical vertigo? Has anyone said this is a cerebellar issue? I sympathize with the wild goose chase and the frustration in getting answers. If you do find something out, let us know.
I think that vestibular migraine may be the diagnosis of exclusion and we may be told that when there is no other answer. To me, that means they are simply saying the origin of the dizziness is the brain- not the inner or middle ear, not ear crystals, not the neck.
Nystagmus itself causes dizziness so I would also wonder the source of yours. Mine was an autoimmune reaction to cancer. Of course dislodged ear crystals can cause nystagmus and I assume you have done exercises for that (BPPV).
Thanks so much for your response. I have to research cervical vertigo. Before COVID I was going to an osteopath who took my head above neck into her hands and lightly stretched it and this helped. Nystagmus is annoying since the two eyes are not working together so this throws off your balance.
I agree that vestibular migraine covers so many symptoms for doctors. My nystagmus, dizziness, sinus pressure (and even one incident of short amnesia) were all attributed to migraine syndrome. The cures suggested (medications) are often worse than the disease! I am starting physical therapy again, acupuncture . My main problem is fear of walking without my cane--imbalance cause. Did your autoimmune reaction and resulting nystagmus get better at some point?
I spent too much time in front of a computer and this might have resulted in some of my problems.
Will try to find a solution without medication since I have real problems with this.
Thx again. Good to talk to someone about this. Nystagmus and vertigo really really affect daily living.
I have had multiple causes of vertigo that are hard to untangle but yes, the autoimmune reaction eased when my cancer was removed with surgery. Dizziness from inner ear, from ear crystals dislodged, from whiplash in the neck, from allergic reactions, and from the brain/migraine. I hope you feel better!