Unexplained dizziness for 3 months no definite diagnosis yet.

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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"wink. 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! 

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  • Posted

    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

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    • Posted

      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. 

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    • Posted

      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

       

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    • Posted

      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). 

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    • Posted

      This is why I do not trust Neurologists very much. Not saying they dont know the brain, but i simply do not think they are educated in Vestibular disease. That's why they only prescribe drugs. I think one of those you have is just an anti nausea med. basically they are just sticking plasters!  And to,suggest,you 'go ahead' and do exercises on your own is not very professional. With VRT it needs to be tailored to your particular symptoms and needs,,otherwise you cld be making it,worse!

      he probably thought of doing that evoked test as it's one he knows, as MS is in his ballpark.  It's so untrue what these drs do without realising the consequences in a patients peace of mind. They know we all google! Th pe chances of younhaving MS are virutally nil i'd say, somdont sweat it. You'll go to,all the hassle of the test only to be told 'Normal'!  It's just time wasting because he doesnt really know what to do! I dont say any of this lightly as i have been this route with. Neurologists, ENT, .audiologists, the latter who wasted a year of my life trying to say i had MAV! (I didn't. 

      The problem is we are brought up to trust that the doctor knows best and in many things like cancer treatment and others they really are. But it seems, going on the many,posts i've read on here, along with my own experience and a few others that i am i'm in touch with regular, we find the medical,profession isnt very .  'Aware' of the best diagnosis or treatments for us.

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    • Posted

      P.s. cinnerzine is an antimhistamine, so will probs be the one making you sleepy and drowsy! And the other is anti nausea. You should. M Aybe look up the side effects of,both online.
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    • Posted

      Yes, I too was unconvinced by Socah's neurologist saying an antihistamine and an anti-emetic would work as long as they were taken for long enough. That suggests to me that he thought/hoped it might be something that would resolve itself spontaneously. In that case the symptoms would indeed wear off, but it wouldn't be due to the medication. However, given that Socah has had this for three months now, it would seem unlikely to me that two weeks of a medication that only treated the symptoms would actually work.

      Still, I suppose it's worth giving it a try as long as Socah isn't driving during this period.

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    • Posted

      I am aware of what each medication does I look into any medicine before I take it. Unfortunately, in this country the way medicine works (I'm told) is if you go to the doctor they legally have to prescribe you something. I've lived here for almost two years now and they will prescribe 6-7 medicines for the common cold. The reason I am a little hopeful is I read a pubmed article about cinnarizine and betahistine which suggested (though it wasn't conclusive) that cinnarizine was effective at treating vestibular neuritis. I am however skeptical as you guys are! Thanks so much for the concern though. As of now I'm going to try and put my trust in it because that's all I can do. Going home is a last resort for me as I love it here! I'm hoping vestibular neuritis is an accurate diagnosis as at least that is treatable. I'll keep everyone updated. Also, some additional information on steps I have taken myself so far. I gave up coffee about 2-3 weeks ago (which sucks because I LOVE coffee) I am not completely refraining as I've maybe had 2 in that period ,but it's still down from 4 cups a day which used to be my daily routine. I'm also trying to quit smoking. Less caffeine doesn't fix the condition at all ,but one thing I noticed is that if I have a lot of caffeine it does make symptoms feel worse. 

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    • Posted

      Ok.  Yes smoking and caffeine arent helpful. I only have two or three decafs a week now.  It's a shame they have this thing about prescribing meds!  The trouble with both those meds are they aren't a 'cure' for vertigo. Anti nausea and anti histamine only treat symptoms not causes. Some people get relief with the anti histamines if their dizziness is caused by allergies. andCinnarzine is just something to quell nausea. You may just as well drink flat coca cola for  the same result.

      have you ever looked at the Vestibular Disorders Association website (VEda)?they have really comprehensive info on all this and you can learn a lot! 

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    • Posted

      In the U.S. some do the same. I went for a simple sinus infection. Doc tryed giving me 5 scripts. I said no. Just a antibiotics is fine. She tryed to give me 2 steroid scripts. I thought that was overkill. Had to go to a walk in facility. Couldn't get into my GP.

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    • Posted

      I would wait on the evoked potential test to see what it shows.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

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    • Posted

      I haven't logged in for a while because I wanted to get to my appointments and what not before I posted further. The ABEP test (auditory evoked potentials) came back normal. My neurologist said that it's most likely vestibular neuritis. He asked if I wanted to continue medication for it and I told him no because from what I've read it makes you compensate slower. I no longer take cinnarizine or diphenidol for the dizziness (I stopped taking it about a week 1/2 ago). The doctor told me I could keep doing the VRT exercises I found online which I've been doing. I asked him if VRT was available from a specialist (because I know that would definitely be better than me doing random videos) and he called the ENT department and told me that the hospital did not have VRT available. An update on how I feel overall for about 2 weeks I felt like I was on a bit of an upswing. Still felt off balance daily, but it felt ever so slightly better. I did get some valium from the doctor because doing my job while feeling off balance was making me anxious and I thought it would help to take the edge off if it does. I try not to take it every day because from what I read that too can slow compensation. If I do take it I only take one 5mg usually only 1/2 at a time(would 1/day slow compensation a lot?). However, I have caught a cold and now don't feel like I'm on an upswing anymore it feels kind of like back to square one. But, I've read it's fairly normal to feel worse after catching a cold with VN so I'm hoping after it passes I start feeling better again. I also bought some gingko biloba to take as I read a few articles that said it may be beneficial in speeding up vestibular compensation. Good luck anyone else struggling with this! It's certainly the worst thing I've ever had. 

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    • Posted

      Lower dose valium works better than high from what my docs told me. I take 2 mg. It is a suppressant so while taking it, the excersizes won't work. You may find a therapist searching rehab facilities.

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