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Anyone diagnosed with VESTIBULAR NEURITIS read this!

Posted , 3 users are following.

jack11633
jack11633

So, I did some reading on line, like medical papers and came across some interesting information.

From what I have read it suggests that Vestibular Neuritis/labyrinths is from diseases such as herpes zoster oticus Herpes simplex virus type 1 (HSV-1) DNA...so that being said I am going to ask for the blood test to see if I have HSV 1...and it will show if it has been reactivated...this way I know for sure if this is whats causing it! VS...freaking out wondering if I have MS or EBV or Lymes disease or heart issues...etc.....

It seems simple enough to be tested for this to find out if this is the underlying cause.

Instead of all the medication they throw down our throats that don't work..PRESIDONE seems to have the most effect when its at the worst.

Also I read in several papers suggesting that VN might not be VIRAL...and could very likely be Autoimmune...which supports my theory that if modifying diet..taking out dairy/wheat inflammatory foods, and consuming TURMERIC and anti inflammatory foods will help greatly.

This is one of the best articles....lots to read..but really informing.

https://www.hindawi.com/journals/jir/2014/459048/

0 likes, 7 replies

7 Replies

  • lily65668
    lily65668 jack11633

    Posted

    Thanks for that, Jack.

    Autoimmunity is being incriminated in an increasing number of conditions, so it wouldn't surprise me one bit if VN was added to the list. That's not to say, of course, that it accounts for all cases of VN, and I realise you weren't implying that.

    However, the fact that it often appears immediately following an upper respiratory tract infection may well point to an excessive immune reaction to the infection rather than the virus itself. This is a known phenomenon - cf. the much more serious Guillain-Barré syndrome.

    • jack11633
      jack11633 lily65668

      Posted

      So that brings me to the growing number of people I am talking to that have not had any upper respiratory infections like myself and find the VN diagnoses very hard to digest!  Not only the relapse for VN is suppose to be in 1% within 28 months...I have relapsed within 8 months..perhaps just an anomaly.

      I will look in the Guillain - Barre syndrome..I will admit I am not educated on it.

    • jack11633
      jack11633

      Posted

      also...I read that for reactivation of HSV1 3 months is about the time frame for recovery...both of my attacks fall under this time frame.
    • lily65668
      lily65668 jack11633

      Posted

      Ah, but I didn't say it had to follow a respiratory tract infection. It's just that a lot of people on these boards describe getting VN or labyrinthitis after such an infection. An aggressive immune reaction to an infection of any kind can spark off an autoimmune condition.

      In addition, an overactive immune system can be hereditary. I have the AI condition Sjogren's syndrome, and just about every member of my mother's family had conditions ranging from allergy through asthma, rheumatoid arthritis, up to a severe case of scleroderma (a very nasty AI condition) in one of my cousins.

      I wasn't suggesting you have Guillain-Barré syndrome either - there's absolutely no match with your symptoms. I was just citing that as an extreme case of how a relatively mild infection can trigger a devastating reaction from the immune system.

      Your Lyme hypothesis may hold water. Lyme disease is known to masquerade as all kinds of other conditions. I'm wondering whether you've been tested for antibodies.

      I don't think you need to freak out over the possibility of Epstein Barr. Many people get this in their teens and 20s, and it's nothing more than a long-drawn-out nuisance.

      I wouldn't worry about MS either if I were you (I'm a former neuro nur se btw) since there's only a minimal overlap with your symptoms, and I'm frankly puzzled as to why you think you might have heart disease, unless you have other symptoms not mentioned in your post.

      Unfortunately, conditions like VN and labyrinthitis can drag on for a very long time. Another possibility to bear in mind is Ménière's disease. However, I would think this is unlikely as it most commonly (though not exclusively) starts well into middle age, and I suspect you're still quite young. Also, you don't mention any hearing loss, and I assume you'll have been tested for this.

      You might well find that adjustments in your diet help, but remember it takes months for these to kick in. I have to say that dietary measures have had no noticeable effect on my AI condition, which I've had for >20 years, though they can be quite effective in some individuals. Get full bloodwork - especially Lyme antibodies - but be prepared for the fact that you may have to sit this one out patiently.

      All the best,

      Lily

  • laurence76206
    laurence76206 jack11633

    Posted

    Hi Jack,

    A very interesting article and one that I subscribe to.  I never had any respiratory infection but did suffer with an ulcer on the eye (Herpes virus).  very soon after I suffered extreme dizziness later diagnosed as VN (with Vestibular migraine).  I was also told by two consultants not to take any steroids although one less qualified consultant told me these would help. Hence I did not take any medication and carried out Vestibular exercises as prescribed by my physio.

    After 3 years I am now about 85% recovered but don't really expect to ever get back to 100%.  I do wonder if I would now be 100% if i had taken the steroids (Prednisilone).

    I do though now carry out a pretty normal life, working, going out, holidaying etc so not all bad.

    Thanks for finding the article, a very interesting to read.

    Kind regards

    Laurence

    • jack11633
      jack11633 laurence76206

      Posted

      Hi Laurence,

      Could you specify what an ulcer on the eye is?  I have pink eye symptoms only in left eye including twitching episodes..thats how I know I am going to get dizzy.

  • laurence76206
    laurence76206 jack11633

    Posted

    Hi Jack,

    I have copied the following from the NHS website:

    Corneal ulcer

    A corneal ulcer is a painful sore on the clear thin covering of the eye.

    These are more likely to affect people who wear contact lenses and are often caused by infections.

    Having a corneal ulcer may feel like there's something in the eye and you may be more sensitive to bright light.

    Left untreated, a corneal ulcer can lead to permanent vision problems.

    Corneal ulcer causes

    Causes of corneal ulcers include:

    Bacterial infections

    Viral infections, including herpes zoster that causes shingles

    Fungal infections

    Eye injuries and small scratches on the eye's surface.

     

    Corneal ulcer symptoms

    Symptoms of corneal ulcers include:

    Grey-white area on the clear cornea

    Eye pain

    Eye redness

    Eye discharge

    Blurred vision

    Eye discomfort

    Light sensitivity.

    I was diagnosed with this just prior to getting the VN.

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