Unexplained dizziness for 3 months no definite diagnosis yet.

Hi all,

I've been browsing these forums a little bit on and off for a while and finally decided to post as I am at wits end. I am currently living abroad teaching ESL. About 1 year ago I had an ear infection. After the ear infection resolved I noticed the sensation of fullness in my ear lingered. I went to an ENT who thought it was "E-tube dysfunction". She gave me some medication which I took, but I saw no improvement. Then I more or less gave up on it as it was just an annoying feeling, not anything serious. Now about 3 months ago I was teaching and had a random attack of dizziness. I went through the rest of the day just waiting for class to be over because I felt so ill. I figured it was because I had some drinks the night before and my body was coping with that. I went home went to bed early and woke up the next day still dizzy. This time I left work early. I have had constant dizziness ever sense. After the initial attack, the dizziness was always present ,but was manageable (I didn't feel comfortable unless my hand was resting on some solid surface, which was annoying but tolerable) so I went about 2 months without seeing a doctor. Then all of a sudden it got worse. I ended up going to see an ENT who did some hearing tests and said my hearing was normal. I then went to work and half way though my first class got extremely dizzy and left straight to the ER. The ER doctor told me it must be "some ear or brain" problem gave me 2 injections (no idea what they were he just said "to help your dizziness" and sent me on my way with little follow up advice and no testing. Two days passed and the same thing happened again. This time I made it through work, but went directly to the ER after. This time I went to a different hospital (I also discovered the hospital I had been going to had a bad reputation among locals so, this time I went to a new hospital.) This ER actually did blood work and a CT scan which were both normal. They recommended I follow up with a neurologist. I went to a neurologist 2 days later. The neurologist said he didn't think it had anything to do with my brain but, that it was probably something to do with my inner ear. He prescribed me diphenidol and betahistine and told me to come back in a week if I wasn't better (this neurologist worked out of the same hospital that had a bad reputation but I had already made an appointment there so decided to keep it). A week passed and I did feel about 50% better with the medication, but still not great so I went back. I saw a different neurologist this time because the one I saw the first time wasn't in that day. This neurologist told me dizziness usually only lasts a day and goes away. I reminded him that this had been going on for 2 months. He told me that the medications I was taking were not to be taken for the long-term. but represcribed the betahistine suggesting I try and stop taking it if I could. Well I waited until I had a vacation to stop taking it (because I was nervous it would affect my work) and found no improvement at all. Now this week (going on 3 months now) I am noticing that the medicines don't seem to be helping much at all anymore. Does anyone have any idea what this could be? So far I haven't been diagnosed with anything except "we think it's your inner ear" and on my receipts, it says "unspecified vestibular dysfunction". I was concerned initially that it was meniere's disease especially with the doctor prescribing betahistine ,but he didn't mention that one. From my understanding Meniere's consists of aural fullness (which I feel that I have) hearing loss (subjectively I have hearing loss ,but objective testing at the ENT showed no hearing loss) tinnitis (I don't have tinnitis) and vertigo spells (I wouldn't call what I have vertigo or spells it's more of a constant unbalanced feeling and feeling a little "woozy&quot. After researching I'm wondering if it could be labyrinthitis or vestibular neuritis. I started doing some VRT exercises I found on youtube today and I'm hoping that will help. I do go see a new neurologist at a different hospital in two days, but am nervous I'm going to have the same thing happen (be given symptomatic medications with no diagnosis or long term cure/treatment). Has anyone had a similar experience? How long did it take you to feel better and did VRT help? The exercises I found online definitely provoked dizziness (made me nauseous to the point that I vomited) should I keep trying them until I find out if there is anywhere nearby I can see a VRT therapist?  Sorry for the long post (that was also a vent session). I'm completely overwhelmed with this and it is starting to make me depressed as well so any help is appreciated! 

Menieres when it first shows up may not have significant hearing loss. Neurotologist is who you need to see. Unfortunately more testing as well. VNG testing will tell more

Socah, I agree with the other poster. I would say though that you shouldn't be doing the "exercises" you found on-line. You don't say what they were. If it's stuff like the Epley or half-somersault manouevre they're specific for BPPV, which it doesn't sound as if you have. They won't do you any harm but they'll probably make you feel worse.

Do they have any specialist vertigo centres where you are? This would be the kind of place you need to get yourself to, as they'd have the full range of specialists to diagnose you.

I hope you soon find some answers. I know from personal experience how debilitating vertigo can be.

Yes i agree,with both Lily,and 'Bill. You need,to,see,a,Neuro,Otologist,,who deals,with vestibular,problems. You don't have to feel 'dizzy' as such to experience Vertigo

Symtoms. ENT's are ear nose and throat, but not alwasy very conversnat with vestibulr probs. And Neurologists  i really  deal with Brain stuff, injuries etc. The two,combine as the messages are conflicting from your three senses that give us Balance.,eyes, ears and vestibular system, and they will do much more testing wise. What country are you in are you covered with insurance etc?

If possible, I would like you to try something for me.  Stand on a piece of foam with feet together and eyes closed.  Have someone near you in case you fall.  Let me know if you keep falling to the same side.  Did the doctors mention anything about seeing nystagmus (quick spontaneous eye movements) during their examination of you?

 Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist,

Fellow of the European Academy of Neurology

I don't think there are any specialist centers near me. The exercises I've been doing are not for BPPV to my knowledge. I posted a link ,but it was deleted. It's mostly eye exercises standing and sitting and one walking heel to toe. 

I'm in Taiwan. I do have insurance. From my searches I haven't seen any neurotologists in my area. 

The doctors didn't mention anything about nystagmus. I just tried the standing on foam thing and had my roommate watch. He didn't notice any leaning ,but I felt as though I was leaning right. 

The negative leaning test tends to rule out a peripheral vestibular problem, at least on one side.  This tends to rule out a vestibular neuritis as well.  The audiogram is normal, which tends to rule out Menieres disease and dehiscence of the inner ear (bone problem).  It does not sound like labyrinthitis as there is no hearing loss.  I would like to hear the opinion of the second neurologist that you will see either tomorrow of the next day.  Please let me know.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist,

Fellow of the European Academy of Neurology

 

Sometimes in Other countries they call them,Otolaryngologists. Have a look under that title. 

Gillian, that's not actually correct. That's just an ear, nose and throat specialist. Or more correctly, that word wouldn't even include the nose. The full word is otorhinolaryngologist. I think they use that term in the US. "Oto-" is the root for ear, "rhino-" for nose and "laryngo-" for throat, or more strictly larynx. They use a version of this word in French, so to us an ENT doctor is called an ORL.

It has to have the root "neur-" or "neuro-" in it somewhere to be a neurotologist - if that's what it's called in English. I'm more familiar with the French otoneurologue but I guess it's the same thing, just back to front!

i read a page for a Taiwan Clinic, and it seems the only people they have to treat vertigo,tinnitus etc is these Otolaryngologists

The problem I had is the excersises didn't help at all cause if the fluid in my inner ear. What I was told. Doc gave me a script from or a diuretic. It still hasn't helped tho. Think they may have to step up to a more aggressive treatment. I was told yesterday ,The primary I been seeing since august used me as a case study. Guess I am famous now. Lol.

Some of the bigger facilities have a neurotologist in the offices of the ENT who they can consult with about your case. The one I go to is in a office with ENT's in a university hospital.

Socha is in Taiwan

Yes I see this. I had to go a hour and a half away from my house to one of these facilities. They are few and far between even where I live. It's a specialty that not to many places have.

Oh yikes. Good luck! 

Went to the neurologist today. He did a test for BPPV (had me lay down quickly to see if it provoked dizziness) that was fine (no extra dizziness from changing positions). He almost gave me the same medicines as before ,but I explained to him that they are no longer working and that I was interested in something that would treat it in the long term. I also asked him specifically what condition he thought I had and he said maybe vestibular neuritis. He prescribed cinnarizine 3 times/day and diphenidol 3 times/day. I reiterated that I would prefer some type of treatment that would help long term. I told him I read about VRT and he said that it "takes a long time" (which I was aware of) and told me to go ahead and do exercises on my own at home. He said in his experience if people only take the medicine for a short time the dizziness will return ,but if you take it for 1-2 weeks it usually gets better. I've taken these twice and so far they are making me tired ,but I'm not sure if they are helping or not. I don't know if it may take some time for my body to get used to them or what. Also he ordered an evoked potentials test for next week and I follow up with him in 2 weeks. I had no idea what an evoked potentials test was and when I googled it saw a lot of things about it being used to diagnose MS. Now I'm nervous that MS might be my problem (although the CT was normal I know that's not the only thing useful in diagnosing MS). 

Yup - they're simply ENT guys. ENT doctors should know how to treat vestibular disorders and I'm sure many have a good track record. However, some of the posts on these boards suggest seeing an ENT doctor is a bit of a lottery.

Yes agree,,to a point. The fact remains that Neuro,Otologists have to do extra four more years of training than an ENT (My Neuro,Otologist At the National Hospital in London told me this) ENT drs do not have to train in Vestibular/neuro, disorders so  anything they do know is what they have read up,on, but not actually certified in?