Plz help: chronic dizziness/ vertigo 12+ years, getting worse, no dx

Ears, nose and throat
1

Hey everyone, is there anyone out there that could take the time to offer me some advice plz?

I have vertigo that has come & gone for 12 years but is recently getting worse. The vertigo can last minutes, hours, days, months, and obviously years. First I'll post recent symptoms then I'll post my questions and lastly my vertigo history. Plz feel free to skim, skip, or read at leisure. I just fig I'd include it for anyone wanting to know.

***Recently:: 

Last Fall I became ill and found out my thyroid was low. Thyroid level is better now but I've developed neuropathy (cause unknown; nerve test next week). Along with all of this I have been having dizziness, vertigo, and very off balance. When I walk it feels as if I'm walking on uneven pavement or like one leg is longer than the other. I get a "drop" feeling as if the floor dropped or that I have when I haven't. It's SO much better when I lie down and don't move. Once I start moving around or etc. it gets worse. It's almost like a sensory overload. If I exert myself too much it gets worse (like walking long distances or around a grocery store). Loud places and department stores with fluorescent lighting are the absolute worst. My eyes feel very strained and it's difficult to stare at phone and computer screens without dizziness/vertigo. A lot of times, I feel as if I'm on a boat? I've developed tinnitus in left ear (never had before) and am now getting small vertigo attacks that last like 20 mins then subside (never had before). At times, I feel as if my body wants to go to the left. I also grind my teeth at night and during day when anxious. I saw another ENT last week for a GERD problem and he just so happened to check my sinuses and saw pus etc. said I have chronic sinus infection. I have allergy testing this week and a VNG (my 3rd) scheduled next week. 

Within the last 6 months I have had 1 echocardiogram, 2 EKGs, 2 sets of complete blood work, 1 24 hour holter, 1 chest x-ray, 1 CT of brain without contrast, 1 MRI of brain without contrast. I have seen 3 ER doctors, 1 ENT (as mentioned), my PCP, and 2 neurologists. I'm currently being evaluated by a neuro for cause of neuropathy.

**My questions::

1. My usual vertigo has NEVER included the "drop feeling", uneven feeling, pulling to one side feeling, or tinnitus. Is this normal for anyone else?

2. Can a chronic sinus infection cause the above type of vertigo?

3. How do you tell the difference between CNS (central nervous system) vertigo and ear vertigo? I fear I may have an autoimmune disorder such as MS and have been misdiagnosed all these years even with tests showing no lesions on brain (I've recently developed spasticity in legs and etc. hence the current nerve testing).

*History of vertigo::  

First started after 2 middle ear infections back in 2004. Have been to 3 ENTs, 2 chiropractors, 3 dentists, ophthalmologists, optometrists; I have had blood work out the wazoo, countless heart tests, (now) 3 neurologists, 1 otoneurologist, etc. etc. Have had CT scans, MRIs, balance tests (3 hours of testing at a time at multiple clinics) and they all discovered nothing wrong with CNS or ears. One doc said chemical imbalance. Symptoms can last hours, days, and even months. 

Please if anyone could help I would be so grateful. I am tired of living like this. It has debilitated my life. 

 

2

Ashley,

i have the left sided only tinnitus, pulling toward the left, and I even went deaf for 72 hrs in that ear, and was treated with prednisone.  I was worked up for Meniere's, but they say not my diagnosis at this time.  Currently, I am considered to have migraine causing all of this.  And yes, I get vertigo, off-balance, walking like drunk (ataxia).  I was put on migraine preventative, and it worked for a year, then stopped.  I am now raising dose and considering a switch in meds.  My neuro says Verapamil is best for brainstem migraine (which is what I am told this is).   Everything is on the left, and back 20yrs ago, even all my regular migraines that I had rarely were on the left.  I have had all the same tests with similar results.  I am told that TMJ can cause some of this, so am in physical therapy for that.  It is helping some, but not drastically. When your dr. said chemical imbalance, what chemicals was he talking about??

3

Hi Ashley,

​I am very sorry to hear about your struggles.  I have had dizziness for over 10 years now and finally got a diagnosis 4 years ago.  It can be very scary to not know what is causing such persistant problems.  I have a few questions to help understand your symptoms.

​When you say vertigo, do you mean feel like the room is spinning or it more a feeling of unsteadiness/disequalibrium?  Do you have a sensitivity to loud noises (like normal noises seem uncomfortabaly loud) and does this affect your dizziness?  Have you have any headaches?  Have the doctors ruled out BPPV benign positional vertigo for the attachs.  How are your symptoms in between the attacks?

​Sounds like you have had some good tests and are working with Drs.  What conditions have they ruled out?

4

I am confuseed by the fact that they did not find anything on testing.  The left ear tinnitus and left postural swaying is suggestive of a left ear problem, or at least something that is related to the left ear.

Many of the answers may come from determining the nature of the polyneuropathy.  The presence of such a polyneuropathy may also be affecting the vestibular nerve (the balance nerve of the ear) in the same package.

The difficulties in loud places may be part of the above (visual vertigo), caused by your increased reliance on vision in the reduced vestibular sensation, to help overall in orientation.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

5

Thank you so much for replying. I'm so sorry you experience this as well. I know it's very hard to live with.

In regards to spinning or disequilibrium, it feels like both. My usual vertigo I've had the last 11 years was room spinning, off balance, couldn't look up or down without everything spinning. The vertigo/dizziness I have experienced this past year (since last Fall) includes some spinning but mainly off balance and dizzy. I have, as of the last few weeks, been experiencing small attacks of vertigo that includes walking off balance and spinning that lasts for 20-30 minutes then subsides.

Loud noises, yes. My dog will bark when I get home and sometimes he'll bark one extra loud one and it feels as if it shoots right through my brain (best way to explain it). Stops me in my tracks and I grab my head. I was at a restaurant the other night and a crowd of 15 came in and the noise was too much. It felt like a sensory overload which in turn made me anxious. If I cut grass for 45 minutes, my ears ring for the rest of the day.

In between attacks, I've been dealing with dizziness. Some days I'm very off balance and some days I'm not. It comes and goes. I can be fine 22 hours out of the day then a vertigo attack can come the last 2. It's unpredictable. But mainly off balance/dizzy uneven on a boat feeling.

May I mention I'm only 28 years old so this has been going on since I was 17.

6

Thank you for taking the time to reply. I appreciate it.

The neurologist I am currently seeing mentioned that my vertigo and neuropathy may be connected but it could be a long shot due to having it so long without the neuropathy. However, I do agree that it is a possibility since I have developed new vertigo/dizziness symptoms with the neuropathy.

The left ear problems have only recently started within the last year so that's why they never found anything on testing beforehand. I have a VNG scheduled next week and I haven't had one since 2010-2011 (first one was in 2007) so it may produce different results.

Also, I am only 28 (29 next month) years old so I have been dealing with this unknown cause of vertigo since 17 years of age.

7

Thank you for replying.

The last year, I started having a flash of light in my left eye and went to an opthalmologist. He said it was called an aura due to ocular migraine. The light looks like a comic book "POW" symbol. It's jagged and yellow.

I have never been treated for migraines but have always wondered if maybe I was having silent ones?

I have no idea lol I'm so lost with all of this.

I was 20 years old when I saw the otoneurologist who said it was the chemical imbalance. My boyfriend went with me, it was in a major city an hour away (I live in the country), and it was 3 hours of testing. At the end of the tests when I finally got to see him, he threw a mesh pillow on the floor, told me to close my eyes, and stand on it - I did. When I did I was very off balance and he immediately said "chemical imbalance". I asked him to repeat why it was happening and he rattled off the medical reason again and I accepted it without further questions out of being shy and intimidated. Had I been a tad older, I would've asked again with no fear of judgement. So I never learned what chemical imbalance it was, unfortunately. They also do not have my records as they sent them to my PCP at the time who is now closed.

These new symptoms all started last August. I was having small "black out spells" where everything would spin for 1-3 seconds but I never passed out. After that came severe anxiety in which I thought I was going insane but it has since subsided due to taking the thyroid medicine (thyroid is known to cause anxiety, etc.). Since then, I have been battling vertigo/dizziness, heavy legs, etc. (which I now know is neuropathy). My PCP kept saying it was all due to anxiety. It wasn't until I developed numbness in face, tongue, arms (last few months) that I made an appointment with neurologists and have since gone from there as my PCP still insisted it was all anxiety.

I have had anxiety for 12 years with vertigo, I know it like the back of my hand and this is not my usual anxiety/vertigo, ya know?

I just feel like a lost cause.

8

Hi Ashley,

Not sure what to make of the neuropathy.  However, for your dizziness symtoms it allmost sounds like you may have 2 diffrent conditions.  Vertigo attacks are most often associated with BPPV (benigh positional vertigo) or meniere's disease.  For BPPV there are physical maneuvers that can be tried to improve the vergito.  For Meniere's disease, patients are usually asked to go on low salt diet and may take diretics.   However, normally in between attacks I have not heard of people still being dizzy or affected by noise.   For the dizzy/off balance feeling, it might be Migrane Associated Vertigo (MAV).  This could be possible even though you don't have headaches.  This is commonly treated with antidipressents that help many people.  A less common but possible considion would be Superior Canal Dehiscense (SCDS).  This condition has the off balance, unsteadiness like on a boat feeling.  it also has Tinnitus as a common symtpom.  It also has hyperacusis, sensitivity to certain loud sounds (like your dog barking).  However, this condition, normally doesn't have symptoms that come and go and no attacks of vertigo.  You might want to research a bit on the conditions above so you can discuss more with your Drs.  Please don't give up, I am sure if you continue to work with your Drs, that you will get a diagnosis. 

FYI, I have the Superior Canal Dehiscence condition.  

9

Eleftherio33095

I too have longstanding left side tinnitus with pulling to the left dizziness. On top of that, I had profound SSNHL in the left ear that lasted 72hrs, and was treated with prednisone. I had two mris and a vng test. Surprisingly, vng and calorics was normal. Right now I am told this is migraine attacking the inner ear or brainstem. I have a long standing history of "regular" migraine with aura, migraine always occurring on left. I wonder of this is correct diagnosis. I am told this doesn't look like menieres.

10

Hi Ashley,

8 years ago I suffered from constant dizziness and the only relief was from sleeping. I was going to ask if you have acid reflux and as you wrote you had a GERD problem that rang a bell for me.

A lot of doctors do not link GERD with dizziness but due to the acid reflux belching up your wind pipe it creates a nausea like feeling...

I eventually went on to take omerprazole tablet and surprisingly it went away within a day or two. I had this dizziness for a few months and no doctors could find out why until I went on a GERD website and found my symptoms quite similar hence I tried the tablet and now I have no more dizziness.

Please have a chat with yor doctor if you are not on that med already. It is a powerful drug and needs to be prescribed and not supposed to be long term use unless your GERD is really bad.

Do let me know how it goes... Good luck. Michael

11

Michael,

My brother in law is a stomach Doctor and he prescribed me some medicine for my acid reflux that I take daily: lansoprazole.

I will continue to take it in hopes it helps. Thank you!

12

That's good to hear you are on the med. if you have been on it for a long time already it may lose its effectiveness or if you have just started the course then hopefully short time from now you get less dizziness.

Your dizziness feeling is exactly the symptoms I had too.

Without the meds before, I turned to meditation and although it might sound very perceptive it did work for me a bit.

13

I was starting to think I have 2 different kinds of vertigo/dizziness as well.

I think I have my regular vertigo and am now experiencing other types of dizziness due to the other things going on.

Thank you for your input. I will come back after my tests next week and let everyone know.

14

It sounds like a left vestibular neuritis, with vestibular symptoms of pulling to the left, together with hearing loss on the same side.  The fact that you got better with prednisone proves this.

Some vestibular dysfunction can also cause migraine, if this is relevant here with regards to the time course of your symptoms.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

15

Thank you for answering.

Can migraine somehow cause vestibular neuritis? Migraine-like attacks of dizziness, sinus pressure, and left side tinnitus preceeded the SSNHL by a year. Before that, I had left tinnitus only for around a year ( no dizziness). I fortunately had no dizziness/vertigo at the time of the SSNHL. I had been on propranolol for 6 mos prior to the SSNHL, and my MAV or migraine attacks had lessened considerably. I keep getting told that I have migraine and then possibly the migraine or a virus attacked my inner ear. I am wondering if migraine can cause vestibular neuritis? It just seems too coincidental that all my issues were on the left, and then I lose hearing on that side. Today, my hearing is fully restored, but I get fluctuating intensities of high pitch left tinnitus that is usually associated with feeling off balance or rocking, but very rarely vertigo. The left tinnitus never completely disaappears, has been with me for 3.5 yrs (my SSNHL was one yr ago).

16

Migraine does not cause vestibular neuritis.  Also, vestibular migraine is usually bilaterally.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology