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What should I do next for unexplained balance problems for over 2 years?

Hello all I'm looking for advice because I'm getting desperate. I apologize in advance for the long post. I'm a 27 year old male normal weight and for over 2 years now I've had a persistent unexplained feeling of being off balance or sometimes "dizziness" (never true vertigo). This happened 2 years ago after a night of drinking so when I woke up with problems keeping my balance I assumed I was just hungover. Unfortunately the feeling never went away. It almost feels as though I'm constantly on a boat (I haven't actually been on a boat in well over 5 years) and sometimes I feel lightheaded or like I'm going to pass out. I am extremely careful when I walk, I think about every step I take to make sure I don't fall (I've never actually fallen). Symptoms diminish when I lay down or sit down but are still somewhat present. Occasionally it feels as though my left eye is "weaker" than my right eye but my eye exam was fine except for being nearsighted. I initially thought my problem was due to an inner ear issue because about a year prior to symptoms starting I had had an ear infection and after the ear infection cleared I always had a feeling of my left ear being "full" but no tinnitus. Subjectively my hearing is a little worse in my left ear but this has never been objectively verified. I've seen many different ENTs who have all pretty much dismissed an inner ear problem as I don't have "true" vertigo. I've had the maneuvers done for BBPV which was negative/didn't help, I've had 2 evoked potentials tests come back normal (auditory and somatasensory, 2 hearing tests were normal, and when ENTs look in my ears they see nothing wrong. My initial diagnosis was vestibular neuritis but that has sense been dismissed with each ENT I've seen telling me it's not an inner ear issue. They've tried giving me betahistine which has not done anything and I haven't shown any signs of Meniere's disease except the ear "fullness" but, nothing else. I've also seen numerous neurologists and have had all testing they've done come back normal as well (I've had a brain MRI and a brain CT both come back normal). Looking at my walking/standing you cannot tell that I have any problems with my balance. The only thing abnormal was one neurologist said I had "slight nystagmus" in my eyes but he said it was minor and likely not contributing to my balance problems. I've tried VRT with no luck. I've had full blood workups and my vitamin B levels are normal and so was my TSH everything else was also normal. The only thing off is my blood pressure is slightly elevated (around 140/80). About 6 months into my symptoms starting I started developing back pain and pain in my joints and ended up getting referred to a rheumatologist. I was diagnosed with ankylosing spondylitis which explained my pain, but not my balance problem. I also had an MRI which showed that I had 2 herniated discs (one cervical and one lumbar) but they are not pressing on any nerves so the doctor said they would not cause the balance issue. I've also been treated for Lyme disease for a few months (1 negative test for Lyme came back and 1 Western Blot had 1 band positive but not enough to confirm lyme disease). At first I did notice about a 50% improvement after starting antibiotics for Lyme but after about 2 months there was no more improvement and eventually symptoms began worsening again and I stopped taking antibiotics. Lyme was also never confirmed, I was taking antibiotics as a "well maybe this will help". I've also seen a cardiologist and had an ultrasound and stress test which were both normal. At my wits end I began seeing a psychiatrist wondering if my balance problems were all due to anxiety (I knew for sure that my balance problems were at least causing anxiety). I also had read about chronic subjective dizziness or PPPD and thought maybe that was the case. The psychiatrist I am seeing is skeptical that my issue is related to anxiety -very frustrating- but agrees that anxiety probably exacerbates the balance issue and is having me take lexapro for anxiety and suggests I continue searching for answers. The problem is I don't even know where to look anymore. Any suggestions on what this might be? Or any ideas on what kind of doctor I should see to look for answers? I've thought about maybe seeing an endocrinologist to try and rule out thyroid issues? My TSH is normal, but T3 and T4 were never tested. I basically have no idea where to look anymore. Thanks in advance for any suggestions.
2 Responses
1756321 tn?1547095325
My mother has had ear fullness for many years. She had seen 4 ENT's and spent $5000 trying to find out the cause of her symptoms with no diagnosis. One day she mentioned her ear fullness worsened drinking coffee. I thought that was very strange and looked up google and found her condition pretty quickly: Secondary Endolymphatic Hydrops (SEH).  Here is some info on that condition from vestibule (dot) org...it is a very long article but here is an excerpt...

"CAUSES
Endolymphatic hydrops may be either primary or secondary. Primary idiopathic endolymphatic hydrops (known as Ménière’s disease) occurs for no known reason. Secondary endolymphatic hydrops appears to occur in response to an event or underlying condition. For example, it can follow head trauma or ear surgery, and it can occur with other inner ear disorders, allergies, or systemic disorders (such as diabetes or autoimmune disorders).

SYMPTOMS
Symptoms typical of hydrops include pressure or fullness in the ears (aural fullness), tinnitus (ringing or other noise in the ears), hearing loss, dizziness, and imbalance.

DIAGNOSIS AND TESTING
Diagnosis is often clinical—based on the physician’s observa­tions and on the patient’s history, symptoms, and symptom pattern. The clinical diagnosis may be strengthened by the results of certain tests. For example, certain abnormalities in electrocochleography (which tests the response of the eighth cranial nerve to clicks or tones presented to the ear) or audiometry (which tests hearing function) may support a hydrops diagnosis. New research has shown that MRI with contrast in the inner ear can give a definitive diagnosis of endolymphatic hydrops, but likely would not be able to differentiate between primary (Meniere’s) and secondary. This is most commonly not used because clinical diagnosis is often accurate."
3 Comments
Thank you for your response! I have not noticed any particular triggers for my symptoms, they are pretty consistent. I was treated with betahistine and diphenidol as an "in case it's menieres" , but had response to neither. Interesting about the MRI being able to possibly diagnose it but the ENTs I have seen don't seem to think Meniere's. But, I will definitely keep that in mind as I continue on. Thank you!
By trigger that means cause...at the beginning. It is then a permanent condition unfortunately.
Oh I see what you mean..coffee etc lol
Good luck with getting a diagnosis.
Avatar universal
Have you had a tilt table test or been tested for nerve damage (They hole punch your leg a few times for a biopsy)? Since you say it gets a little better when you sit or lay down, that sounds like POTS or some other manner of dysautonomia. You should monitor your blood pressure and heart rate daily, sitting, upon standing, and after standing for a time before your appointment so that you have something to bring to the doctor. Ask the doctor your seeing specifically about aforementioned tests and dysautonomia before making an appointment because most neurologist will not test for this and do not treat this. There are only two doctors in my entire state that have the equipment to test for dysautonomia related conditions. I have an Omron that tests blood pressure and heart rate and syncs with my phone to make it easy. Regardless of whether or not it's dysautonomia, I find that the best way to figure out things like these when doctors aren't being helpful is to start a health journal. Write down when you're symptoms are at their worst during the day, what did you eat/drink, were you talking/walking/studying, what was your HR/BP at this time compared to when you're feeling your best. Taking a holistic approach to your health is also advisable as you attempt to determine what's wrong. All your smaller systems- renal, lymphatic/immune, endocrine, play a large role in how you feel overall and small things can tip the balance with them.
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