Vestibular Neuritis without Dizziness? Help!

Posted , 6 users are following.

Hey guys, sorry for the long post. Bear with me. A year ago I fell extremely ill - I was fine the one day and the next I woke up with an extreme feeling of drunkedness, disorientation and fatigue. For the first few weeks I struggled to do anything - read, walk, drive, understand lectures (I am a student).

I went to a bunch of GPs in my area and none of them had any idea. eventually after about 4 months of feeling like this a doctor diagnosed me with "chronic fatigue syndrome" and that with rest and the right nutritional changes it should clear up in the next few months.

Fast forward 7 months and I still have this incredibly debilitating brain fog. I decided that CFS can't be correct cause I was extremely diligent and had no improvement whatsoever. I ended up seeing an ENT and he diagnosed vestibular neuritis.

Reading through the forums, many of my symptoms overlap - confusion, "brain fog", difficulty in stores and busy places, difficulty reading, problems with spacial awareness, cognitive problems, improvement of symptoms from morning to evening, fatigue, depression and anxiety.

However, at no point during the acute phase or the chronic phase of the illness have I ever felt "dizziness". The rooms has never spun, I've never fallen over, my balance seems fine. All of these being defining features of VN.

Is it possible to have VN without the dizziness? Am I perhaps misinterpreting what is meant by "dizziness" in the context of VN? My understanding of dizziness is the feeling you get when as a child you spun around in circles until the ground started to wobble and the world spin. I have never felt this during my illness.

I have just started VRT and it doesn't seem to have helped so far - I've been doing it for a week and I understand that it may be months before we have any noticeable improvement. I also just had a tonsillectomy and my symptoms deteriorated significantly post operation.

Has anyone else ever experienced anything like this? Does this sound like just VN or could there be something else going on?

(I've had an MRI, Autoimmune screen, pretty much every blood test, hearing tests, CT scans - all of which came back fine)

How long has VRT taken to make a difference for you?

Thank you!

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11 Replies

  • Posted

    Hi Kevin, so glad we found this website as it appears just to be able to discuss and read what other people are going through makes it almost bearable to say the least.  Yep all the symptoms are there and it appears we seem to develop secondary symptoms like lights, corridors, sounds etc.   If you haven’t spun out (like a drunken night out or a kid spinning around and jumping over the broom game) I would consider that a plus. I wonder if other people out there have the same symptoms as you without the spins. I also had lack of spacial awareness and found myself walking like a puppet.  Anyways make sure whoever you see is a specialist in their field.   A SPECIALIST IN THEIR FIELD !   I have BPPV not VN! So I don’t have pains in my ears but the crystals have dislodged and are floating in the inner ear giving a perception that I’m still moving when I am not !  Hang in there Kevin as your not alone!
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    • Posted

      Hey Donna, thanks for your words - I was also diagnosed with BPPV. I did the physio for a few weeks and in a follow up my doctor said my BPPV had resolved. Hope you have a speedy recovery. Hang in there
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  • Posted

    Hi Kevin,

    Many years ago I was diagnosed with ME (CFS) and was initially told that this would go within 18 months.  Unfortunately it never did but I did recover well enough to lead a normal life (with the exception of returning to a lot of my sports).

    Fast forward to December last year when I awoke with a spinning sensation at 5.30am.  This lasted most of the day and I managed to return to work after a day off.  The sysmptoms of veering to the left bagan to get worse and after 1 month I went to the Doc's who then arranged for me to see a specialist.  The specialist then diagnosed VN in February.  Like you say many of the CFS and VN symtoms overlap so I have found it difficult to understand if it is the VN persisting or the CFS kicked in.  

    I went to see Mr Rea at Leicester in June (who is one of the top specilaist in the country for VN) and he said that I definitely had acute VN and I have since began physiotherapy. He did not feel that my CFS was really an issue.  I have now been doing the physio for 8 weeks and can feel some slight improvement.  You will experience a whole host of sysptoms with VN some very strange especially with the eyes.  You will need to bear with the VRT but may need to see a physio to get VRT specific to you as the Cawthorn Cooksey is too generic (but does help a lot of people).  I have been told that 3 months is around the time you will begin to feel a real improvement in your condition and 6 months when you may be feeling back to nromal.  We are though all different and recover at different rates so keep going.  As part of the physio I also go for three 15 minutre walks per day.

    Keep going you will get there in the end.

    Cheers

    Laurence

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    • Posted

      Thanks Laurence, good to hear I'm not the only one who's been lost with all these ambiguous symptoms. I've also been walking which has initially made it worse but I think that's to be expected.

      All the best for your recovery

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    • Posted

      Hi Kevin,

      What I also meant to say is that dizziness is not always defined as spinning, this can be rocking, swaying feeling off blance, veering left or right.  I only ever had the spinning right at the start but was never sick (unlike most other people with VN).  I have lost weight though but this is probably due to the anxiety the condition causes.  Also like you I have undergone every possible test (blood tests, MRI scans of head and neck etc).  You may see on other forums talking about this subject that we are all trying to find solutions and doubt the diagnosis given.  I think the best way forward is to accept what we have been told and try to get better.  If after a stated time there are no improvments then we should then start to question it.  

      There is avery good website from two ladies called Emma and Isla, they had the condition for a long while but eventually got better and have been leading normal lives for many years now, this I find is very insperational.  They said the key is to keep going with the VRT regardless of how it makes you feel or how you are feeling on a particular day.  I also feel worse after each walk but have been told to expect this.

      Cheers

      Laurence

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    • Posted

      Hi Kevin, can't remember if it was you or laurence who mentioned the vertical heterophoria, or maybe it was someone else, sorry, but i had the optician check mine the other day and she said i don't have it. She showed me the difference of what the pictures would look like if i did and so we have definitely ruled that out.  Just thought i'd let you know out of interest.  Anne.
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  • Posted

    I've noticed a reference re VRT is that a form of physio set for you? I got so ill days on end  with the Eply that they had to stop! 
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    • Posted

      Yeah, get a referral for a good physio in your area who can set exercises to rehab your vestibular issues. It seems like the most important thing. The eply counts as VRT I think.
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  • Posted

    Hello Kevin. my name's Kevin too.  Regarding your main question, dizziness means a lot of things.  I, like you, have never have the spins.  However, I will say that I'm dizzy just about every day.  Going into the store, being on the computer, seeing weird floor patterns.  When those things happen, I get disoriented, and feel like I could potentially loose my footing.  That's what me and others think of as dizziness.  Technically, it's called "visual veritgo."  Be sure to do a search on those terms and read about it.  Also, there's a really good lecture about it on Youtube from the Cleveland Clinic.

    As for your particular case.  It is very similar to mine.  My balance test was "normal" and hearing tests were near perfect.  However, I have the brain fog, visual veritgo, etc.  I have never fallen.  Unlike you though, I cannot get any professionals to commit to a diagnosis since my tests were normal. Something tells me if I was wobbling around more, I woudl have got more attention.  Anyway, I just got booked today, and will be waiting six months to see the big dizzy expert here at Ohio State.  In the meantime, I consider myself a VN patient.  

    My symptoms came on during late June and continued through July.  When August came around, things got about 50% better.  I had been doing my own VRT off the Internet through July.  I started seeing a real VRT person during August, even though I was recovering.  However, something happened mid August though and most of my progress was lost.   I am currently not seeing the therapist anymore, but will probably return to therapy under a different person (she didn't seem to have much experience).  Lots of other health problems came up during the ordeal which complicated things.

    Anyway, I recommend you do the VRT simply because of a lack of options.  The other thing I heard about is SSRI drugs, which some studies have been shown to help.  Be prepared for setbacks.  Keep a journal of of symptoms.  Get out and exercise.  Oh yeah, check your vitamin D levels.

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    • Posted

      Hey Kev, your description of visual vertigo makes sense. It is similar to what I feel. Thanks for that.

      It's interesting that you mention SSRIs, yesterday I finally managed to see a neurologist who said that perhaps what I am experiencing is a form of a migraine that is chronic and painless, and somehow related to my vestibular system. He has prescribed me trepiline which is also an anti depressant (yet not an SSRI) with an off label usage for migraine prevention. I will comment back on this thread to let everyone here know whether it has made a difference after the two weeks suggested.

      I don't think anyone can emphasize enough how important exercise is. Due to my "chronic fatigue" diagnosis I spent months indoors resting, hoping to feel better. This left me deconditioned and with as you guessed, a vitiman D deficiency.

      Good luck for your recovery

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    • Posted

      Hi Kevin I am also on a low dose tricyclic antidepressant for silent migraines as they act a neuropathic pain relief.  For for the first few weeks i felt much improved, but was due to go back to be reviewed today and the appointment has been reschedule until next month as the consultant is off. I could increase the dose from between 10 mgs to 70 mgs if needed but as i drive at work i don't want to have any drowsiness.

      Hope you feel better soon,

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