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Nystagmus when turning head left or right

Posted , 5 users are following.

brittney74707
brittney74707

I am beyond depressed and cannot describe my emotions. Since October I have been going through some strange symptoms. It started out as vertigo- difficulty focusing my eyes the room spinning to the right sensation. The symptoms occurred before my menstrual cycle. Then I went to my Primary doc and she Dx me with bppv and sent me to vestibular therapy. The therapist never say nystagmus doing the dix hallpike exam and never truly felt it was bppv. After 2 weeks the symptoms went away and I moved on.

November- got a headcold and felt the eye jerking sensation. Never progressed like initial episode.

(Never felt normal since this all started with my eyes although close to normal for most part)

This current episode started 2 weeks ago to the day. Started with the inability to focus- like I would talk to someone and look at them and felt like my eyes were moving although no one noticed it. I feel like sometimes my pupils are dilating to my pulse too. This all started again before my menstrual cycle was due. I had slight vertigo but I have horizontal nystagmus when I look left and right and it's extremely brief. I did have 2 migraines from my period but I have always had them. Other symptoms I had this time were tinnitis and a feeling of pressure in my ear or below- not anything major but it's different. I also feel as though my head is foggy at times- maybe even heavy? Not sure how to describe it. I have a history of seronegative arthritis that has always caused pain in my sacroiliac joints (spondyloarthropathy)... not sure if it's relevant.

My problem is I went to therapy today and she said there was nothing she could do for me saying it's not my ear. I am going for a second opinion with an ENT next week- saw one last week and he gave me no possibilities. I am 31.. beyond depressed. When you read nystagmus causes it tells you brain tumor or MS.. I'm not expecting anyone to diagnose me on here but please any insight to make me feel less emotional. As of now i am hysterical for 5 days bc I want to know why this is happening and no one can see it and of course it takes weeks to see a specialist. I have nystagmus and ineven recorded it to show the docs.

0 likes, 14 replies

14 Replies

  • eleftherio33095
    eleftherio33095 brittney74707

    Posted

    With the symptoms of episodic vertigo, and appearance of tinnitus and pressure in the ears, and occassional migraine, you probably either have Meniere's Disease or Vestibular Migraine.  Have any of your doctors mentioned these possibilities?  I would be very surprised if they didn't.  If possible, I would like to see the recording of your nystagmus.  Did you do an audiogram up to know?

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

    • brittney74707
      brittney74707 eleftherio33095

      Posted

      I am waiting for testing. No one has mentioned anything to me about Ménière's or migraine. I asked about Ménière's but the ENT last week said that was highly unlikely bc it comes on quick and you get severely ill. My vertigo episodes are "minor" but the nystagmus is there. It is always worse in the morning. Would vestibular migraine last this long? I feel as though this is never going to stop- over 2 weeks today. I have this constant cloudy head feeling too. (Not meaning forgetful or anything just literally feels off) the first episode I had didn't last this long. This one isn't improving at all. Some days are better than others as in the nystagmus isn't as bad.. mornings make me so anxious though.. I would send you the recording of my eyes but not publicly on internet

    • eleftherio33095
      eleftherio33095 brittney74707

      Posted

      You can send messages privately to me here.  I do not know if you can attach video.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • brittney74707
      brittney74707 eleftherio33095

      Posted

      I went to the emergency room. I got extremely concerned bc i felt lightheaded. They did a CT scan of my head which was negative thank god. The doc couldn't provoke the nystagmus so he saw my video. Unfortunately he noted that my one pupil is smaller than the other. He was the ER doc and highly suspected MS. I have no weakness or vision deficit except the jumping vision. I feel like my pupils change with my pulse- he said it's called Hippus. Now I have to wait to get into a neurologist.

    • brittney74707
      brittney74707

      Posted

      My pupils are equal to light just not equal when normal.
    • eleftherio33095
      eleftherio33095 brittney74707

      Posted

      Because the physician saw your eyes and said it was hippus, you will have to follow his advice and see a neurologist.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • brittney74707
      brittney74707 eleftherio33095

      Posted

      I am waiting for an apt. I am also getting new symptoms daily now. I'm going to wait for neuro.. unfortunately I think it's true 😔

    • eleftherio33095
      eleftherio33095 brittney74707

      Posted

      Let me know how it goes.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • brittney74707
      brittney74707 eleftherio33095

      Posted

      It's been a while since I wrote back. I was admitted to the hospital for weakness and I felt really off balance. I had an MRI of head and MRA of neck- it was negative-- per the new ENT on board. The neurologist still has to go over things with me but she said this was good. Said it doesn't rule out MS completely but it's a good thing.

  • gillian76726
    gillian76726 brittney74707

    Posted

    Go back to your GP and tell them you want to be referred too a Neuro Otologist.  (Not a Neurologist as they are really about the brain only amd not the Vestibular system). Dont bother with another ENT as they are trained for Ear,  nose and Throat, not the Vestibular system. A Neuro Otologist is much more qualified.  Also google Veda, Vestibular Discorders Association, a US site who are the Best for information on all things .dizzy! They have lists of consultants too i believe.

    also your anxiety and stress will be making it worse, so in the meantime while,waiting to see the neuro otologist find a way of calming yourself when you can p,  ot easy i know, but v.important with this condition.

  • gillian76726
    gillian76726 brittney74707

    Posted

    You. Eed to see a. Neuro Otologist (Not a straight N eurologist as they deal,with the brain only,whereas the other deals with  pboth veatibular system and brain, which is what we need). ENT are just that!, Ears, nose and Throat.  We all go that route, dont worry, when we learn an ENT isnt going to be able to help us. I learned all this the hard, and long drawn out way!  Also go to the Veda website, Vestibular Disorders Association, a US based site. They have a wealth of info on all this dizzy and lists of consultants.  Also bear in mind stress and anxiety will exacerbate your symptoms, so whatever you would do,to calm yourself somehow, do that. 
  • amanda95449
    amanda95449 brittney74707

    Posted

    I had nystagmus for three weeks which sent me to the hospital. They used strong steroid drugs to settle it down. The 'off' feeling could be derealisation, which is what i developed as a symptom from the nystagmus. My advice would be to see a neuro-otologist as well as an ophthalmologist if you can, so they can check the eyes to see if there are any other things happening.

    • brittney74707
      brittney74707 amanda95449

      Posted

      For some reason I didn't get notification that you wrote this-- I am going Wednesday to a neuro ophthalmologist... getting ENG and audiogram the following week.. the neuro said if these tests come back normal I may have to see a neuro otolaryngologist-- I live in the states and there is only 1 in my state. My vertigo/dizziness/tinnitus all comes before my period and eases after- the killer part is that since this started my vision is synched with my pulse.. so for instance- we had snow today and I went outside to shovel.. from the exertion causing increased heart rate- my vision pulsates to it.. it's tolerable without the vertigo but once the nystagmus/vertigo starts I can't explain how bad it is.. I am attempting a low sodium diet (like Ménière's disease recommends) to see if it has any impact.. I wish someone could just freaking figure this out and treat it! I feel like they all look at me like I'm crazy- but I record the episodes when they are bad so they can see them- I'm 31 I want to get back to my normal life.

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