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Congenital dizziness/vertigo

Posted , 5 users are following.

oxalic16986
oxalic16986

Hi guys,

I'm a 30 years old male.

As far as I can remember I've had this strange sensation of floor moving up and down, and left and right.  Sensation like I'm on a rocking boat and like I'm or the world is moving in various strange ways.

As a kid I used to dread going to amusement parks because of the fear that rides may cause the dizziness and vertigo to worsen.

I got tested by an ENT who specializes in otology and her diagnosis was left peripheral vestibulopathy(lesion in left ear).  But unfortunately she suggested no treatment besides the ones I already know. I control the dizziness by using benzodiazepines(clonazepam, lorazepam, diazepam, alprazolam etc). These meds cut the intensity of vertigo/dizziness.

This condition has all but destroyed my life. I live in constant fear plagued by anxiety/panic attacks, various phobias(agoraphobia, clautrophobia) etc etc. The condition greatly limits my mobility and restricts my activities greatly. I have to keep my meds with me at all times.

I do not know why I have the dizziness. There is one and only one incident of ear infection in my life so far and that happened when I was an infant. It is possible that infection caused damage to my left ear and this is what causes the dizziness/vertigo. I however do not know this for sure.

Is There a Way Out of this Mess???

0 likes, 15 replies

15 Replies

  • oxalic16986
    oxalic16986

    Posted

    Oh and alcohol works too but is more expensive than the benzos.
  • linda40217
    linda40217 oxalic16986

    Posted

    Hi, I can relate to your post. I have a condition called mal de debarquement syndrome (MDDS). I have symptoms closely related to yours.

    I'm sorry you're unable to do a lot of things. I too avoid certain situations due to the anxiety.

    I'm hoping just to offer you a sense of understanding of what you're going through. You're not alone. As far as treatment, I'm currently seeking that out myself.

    Don't give up!

    Sincerely, Linda

    • oxalic16986
      oxalic16986 linda40217

      Posted

      Did the mal de debarquement syndrome develop after traveling on a ship or was it spontaneous?
    • linda40217
      linda40217 oxalic16986

      Posted

      I woke up early one morning not able to focus on the numbers on the clock on my nightstand . Got out of bed with mad dizzyness and nausea. Everything was spinning. Took myself to tge ER and the pumped me full of meclazine to stop the vertigo.

      Four years later, I'm dealing with these crazy symptoms which seemed to have been established from the initial bppv. I did as a young teen/adult experience weird floating body symptoms.

      Not sure if this is just a larger version to the above mentioned.

    • Marialovessun
      Marialovessun linda40217

      Posted

      I am so sorry you are dealing with this. Have you tried vestibular therapy? My physical therapist really helped me.
  • Marialovessun
    Marialovessun oxalic16986

    Posted

    Have you had your vitamin D checked? You have to ask your doctor to check it because most of the time they don't. I started getting dizzy about 6 months ago and it pretty much destroyed my life for awhile. I couldn't take care of my kids at all. I was diagnosed with migraines and offered medicine that I refused. A month ago I went to my doctor because of leg pain and he did blood work. Everything came back good except for very low vitamin D. I have been reading a lot about it now and I truly believe my low vitamin D is causing my dizziness. I am slowly getting better. I pray you start to feel better too!

    • linda40217
      linda40217 Marialovessun

      Posted

      Hi Maria, thanks for your kind words. I was seeing a PT for awhile and found relief for about a week. It was too expensive to continue unfortunately. She thought it was neck related. Not sure.

      Vitamin D deficiency not sure that's it. I'm continuing to seek info on this condition. I'm pretty certain I have the MDDS.

  • eleftherio33095
    eleftherio33095 oxalic16986

    Posted

    Was vestibular rehabilitation recommended?

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

    • linda40217
      linda40217 eleftherio33095

      Posted

      Describe vestibular rehabilitation please. smile

      At one point I was given exercises related to eye and hand movements along with neck and head nodding with posture in mind.

      I admit I didn't stick with it very long.

    • oxalic16986
      oxalic16986 eleftherio33095

      Posted

      The doctor did give me some VRT exercises to do but they didn't seem to be effective. The neurotologist then decided to go along with benzodiazepines since nothing else was working.

    • Marialovessun
      Marialovessun linda40217

      Posted

      I do them every day. I bought a huge sign that goes from 1 to 100 and I step about four feet back and shake me head left to right and up and down. I focus on a number then move on. My dizziness is doing really good. When I do this exercise it brings on a heavy headed feeling and severe dizziness. I was told by my physical therapist you have to bring on these sensations during therapy to retrain your body to get back to normal. Also I do neck strengthening too.
  • Olizzieo
    Olizzieo oxalic16986

    Posted

    I hate mentioning this because it's an awful option, but when your life is destroyed to the extent that it seems to be, you could ask if they can permanently destroy the left vestibular system. The ENT will let you know the pros and cons of this and what type of dizziness you would be left with, if any.

    • oxalic16986
      oxalic16986 Olizzieo

      Posted

      I've read of this but I also suffer from severe headaches and excruciating eye pain(possibly somatoform pain disorder). So there is a non zero possibility that these two could also be contributing to vertigo. I have reduced hearing due to whatever reasons but no tinnitus whatsoever. My neurotologist diagnosed me with left peripheral vestibulopathy after caloric testing which showed a hypoactive response to left ear irrigation but a normal response to right ear irrigation.

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