Constant Dizziness

Posted by lenamarissa @lenamarissa, Jun 4, 2022

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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I wonder if you are having vestibular migraines. That seems to be the diagnosis when nothing shows up in the ears. The other possibility is cervical vertigo, which is often not considered ( have you had whiplash) but from your description that seems unlikely. Do you get nausea?

Has anyone looked at your eyes for nystagmus? An investigation of BPPV could resolve that question. Those eye movements can cause symptoms similar to yours. BPPV is caused by dislodged ear crystals. There are other causes for nystagmus as well.

Overall it may be a migraine-?

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Hello @lenamarissa, I would like to add my welcome to Connect along with @windyshores and others. I know it must be really frustrating having constant dizziness and still no answers after seeing many doctors, ENTs, cardiologists, neurologists and physical therapists. My daughter had similar symptoms but it wasn't constant. After a few years of fainting episodes we found out she had Long QT Syndrome which was diagnosed by a Mayo cardiologist. I'm sure you have probably done a lot of searching but if not these Mayo Clinic references have some information that may be helpful:

— Dizziness – Symptoms & causes: https://www.mayoclinic.org/diseases-conditions/dizziness/symptoms-causes/syc-20371787
— Symptom Checker – Dizziness in Adults: https://www.mayoclinic.org/symptom-checker/dizziness-in-adults-adult/related-factors/itt-20009075

Have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic?

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@windyshores

I wonder if you are having vestibular migraines. That seems to be the diagnosis when nothing shows up in the ears. The other possibility is cervical vertigo, which is often not considered ( have you had whiplash) but from your description that seems unlikely. Do you get nausea?

Has anyone looked at your eyes for nystagmus? An investigation of BPPV could resolve that question. Those eye movements can cause symptoms similar to yours. BPPV is caused by dislodged ear crystals. There are other causes for nystagmus as well.

Overall it may be a migraine-?

Jump to this post

Has anyone given you exercises for BPPV or vestibular neuritis or labyrynthitis? Since you say you do not sense the room spinning, these may be unlikely but the exercises can eliminate diagnoses. I have a lot of dizziness and am sorry you do too!

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@windyshores

I wonder if you are having vestibular migraines. That seems to be the diagnosis when nothing shows up in the ears. The other possibility is cervical vertigo, which is often not considered ( have you had whiplash) but from your description that seems unlikely. Do you get nausea?

Has anyone looked at your eyes for nystagmus? An investigation of BPPV could resolve that question. Those eye movements can cause symptoms similar to yours. BPPV is caused by dislodged ear crystals. There are other causes for nystagmus as well.

Overall it may be a migraine-?

Jump to this post

The ENT doctor did mention the migraines but I’ve never had a migraine before and don’t feel any type of headache feeling at all. I don’t get nauseous and they did test for BPPV too.

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@johnbishop

Hello @lenamarissa, I would like to add my welcome to Connect along with @windyshores and others. I know it must be really frustrating having constant dizziness and still no answers after seeing many doctors, ENTs, cardiologists, neurologists and physical therapists. My daughter had similar symptoms but it wasn't constant. After a few years of fainting episodes we found out she had Long QT Syndrome which was diagnosed by a Mayo cardiologist. I'm sure you have probably done a lot of searching but if not these Mayo Clinic references have some information that may be helpful:

— Dizziness – Symptoms & causes: https://www.mayoclinic.org/diseases-conditions/dizziness/symptoms-causes/syc-20371787
— Symptom Checker – Dizziness in Adults: https://www.mayoclinic.org/symptom-checker/dizziness-in-adults-adult/related-factors/itt-20009075

Have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic?

Jump to this post

Thank you for those references! And yes I did try and get in to one but they denied me saying they I need a diagnosis first. The second one did accept me but I had to cancel due to school because I’ll have to go out of state so I will be trying to get in again.

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@windyshores

Has anyone given you exercises for BPPV or vestibular neuritis or labyrynthitis? Since you say you do not sense the room spinning, these may be unlikely but the exercises can eliminate diagnoses. I have a lot of dizziness and am sorry you do too!

Jump to this post

Yes they did try all these exercises but no luck. I had brought up the vestibular neuritis to the ENT doctor too from my own research but it was quickly shut down as a possibility.

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@lenamarissa

Yes they did try all these exercises but no luck. I had brought up the vestibular neuritis to the ENT doctor too from my own research but it was quickly shut down as a possibility.

Jump to this post

I wonder why they shut it down! Do you like your neurologist? Unfortunately there is no test for vestibular migraines. A lot of these things are diagnosed by exclusion and are subjective. It seems significant that you don't have nausea.

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@windyshores

I wonder why they shut it down! Do you like your neurologist? Unfortunately there is no test for vestibular migraines. A lot of these things are diagnosed by exclusion and are subjective. It seems significant that you don't have nausea.

Jump to this post

I’m not really sure! And I’ve actually seen 3 different neurologists and unfortunately the one I really liked retired so I’m with a new one now. I’m scheduled to do an EEG soon so maybe something will come up on that 🙁

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You can have migraines without headache. I have a variety of different kinds of migraine, including auras with the electric patterns visually, but have never had a headache. It is a misconception that migraine equals headache!

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I have had nystagmus and vertigo for 20 years–was not bad at first. Recently developing pain in sinuses. Eyes have problems focusing and therefore the imbalance issue. I have been diagnosed with nystagmus, vestibular migraine.
*Neurologist recommended lexapro–took for 12 years but no help and now think it makes it worse.
*I have seen around 20 doctors and specialist in Bay area–neurologists, ENT, vertigo clinics, neuro ophthalmologists, etc. Latest docs think my problem is migraine syndrome. I started nortriptyline, but it made me slightly nausea, caused slight increase in blood pressure, and occasional skipping heart.
I can walk in a straight line but as soon as I turn I lose my balance.
I am fine reading, watching TV, at computer. I was a walker until the last 10 years, I am sad since now walking outdoors is a hazard if I am alone. I have fallen several times. I walk with a cane. I am better indoor. I think the focus outdoors is challenging.
Any suggestions would be appreciated.

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