1. Community
  2. Ears, nose, throat and mouth
  3. Vertigo and Dizziness

Anyone had bad nystagmus along with their vertigo diagnosis??

Posted , 4 users are following.

DeeScared
DeeScared

greetings. I am pretty much losing my mind like I am sure fairly most of you were when this first happened to u..and maybe are still going thru it. 

ive been reading many posts trying to just...I dunno. Trying to convince myself that this won't last forever. Trying to convince myself I'm not alone. And mainly trying to stop crying. 

I haven't read much here about you guys having nystagmus as your main symptom with the vertigo. I am in week 8, about to me in my 3rd month of having this darn vertigo and my main problem is I CANT SEE. I can see a bit, but it's all jumpy. This goes 24/7. Never ends. I've had a cat scan, MRI, balance and visual testing, been to 3 ENT's, a neurologist (who was MEAN and unhelpful), my primary dr like 7x, and ophthalmologist, acupuncturist, chiropractor and a neuro ophthalmologist. Oh and I did vestibular rehab for 6 6 weeks. And here I am, still not seeing straight. 

I spent 7 weeks home waiting for this to subside like "they all say" and it never happened. Then I got put on .5mg of klonopin and all of a sudden I can see better. However, I was also told that taking this med will suppress my vestibular system and it won't ever heal on its own. And I'll be stuck like this forever. 

If I go off the meds, I'm back at square 1. My cousin came to stay with me for 4 weeks because I literally couldn't do anything on my own. She is gone now. 

I need to know now is anyone has had nystagmus lasting this long, what you were able to do and honestly if it left or if it became permanent. I'm super scared, super stressed....I'm along. No parents or anything. So if I can't even see anymore like, I have no idea what is going to happen to my life. Don't even know where I would stay. I don't know. Any feedback would be welcome. Thank u in advance. 

0 likes, 7 replies

7 Replies

  • DeeScared
    DeeScared

    Posted

    And I'm sorry for the typos. I have no idea how to go back and edit. 

  • Mollypop2
    Mollypop2 DeeScared

    Posted

    Nystagmus plagued me and was a certainty that nausea, retching, sweating and headache were not far behind. I also seemed to 'float' above the road if driving when it occured. Second time this happened I realized that turning my head to the right and downward to retrieve sunglasses was the 'trigger'. Once in the stationers I was searching top rack cards and got dizzy with nystagmus following. Horrid vertigo as you all know and incapacitating. Several times when it occured away from home I had to call family to come for me and another driver to ferry the car home. Once it was triggered by the auto massage in the chair at the nail salon. Again twice while shopping and bending low to get something at floor level and rising too quickly; I fell straight backward as though shot! Cracked my skull once as a result and spent time in hospital horibbly ill. Veering this way and that at home simply trying to get chores accomplished. Epley maneuver helped at times, meclizine wasn't much aid.

    Exasperated after being so sick and uncertain of my ability to go anywhere or do anything without fearing repeated shadows on the road (as passenger) and never knowing when I would get Vertigo I sat down and composed a list of foods and medications I had used since first learning of my hearing loss (I'd had tinnitus since childhood). One by one over a period of months I isolated 3 triggers. Since isolating these I've been vertigo free!. Before telling you what prompted my vertigo I must say my physician was consulted prior to discontinuation of prescribed medications. Always consult your physician before altering any meds! Always !

    My triggers were yogurt. Gee, I'd been eating it daily as a probiotic for years. Stopped that first. Less episodes but still occurring. Dr. guided me through reducing, then elimating first, pregabilin then Ultram for degenerative arthritis and nerve pain.

    15 months have passed since I last had vertigo. Such a blessing.

    You are different. What helps one may not help another, always consult your doctors. My hearing loss continues and I have terrible pain in joints and nerves but I can struggle with those better than vertigo.

    Good luck to all who share this malicious sickness in finding triggers and getting better. At one time I was given a Menieres dx. Don't go without hope and determination.

    • Mollypop2
      Mollypop2

      Posted

      By way of clarification, my neck was sometimes involved, as though turns in some directions caused nerves to pinch or vessels narrow. I have had cervical fusion twice which could contribute.
  • eleftherio33095
    eleftherio33095 DeeScared

    Posted

    Have the doctors you have seen confirmed that you have nystagmus (due to vestibular/balance dysfunction), or is it another eye movement abormality that you have?

    Eleftherios S. Papathanasiou, PhD FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

    • Mollypop2
      Mollypop2 eleftherio33095

      Posted

      My nystagmus was dxed. One visit to my physician: I drove an hour to the appointment in another city. I missed a turn and had to go on the next exit and double back to my turn. I quickly turned my head checking for oncoming traffic before reentering the roadway and felt strangely the remainder of the way. When Dr. entered the room he looked at me and asked if I knew my eye was jumping. After replying no he tiltedy chair back a bit, held his forefinger in front of my nose, told me to follow his finger and moved it towards the ear on the side of the affected eye. I grabbed for his arm! I was falling! The sensation that I was falling off a building was incredible and yet I was still in the chair and doctor and nurse had,hold of me...

      He explained the vertigo, gave epley maneuver which corrected the strange feeling I'd had since quickly turning my head to check traffic. Luckily, they epley me before any headache or nausea set in. He then sent me down the hall to the audio testing station to determine the amount of hearing loss.

    • lily65668
      lily65668 Mollypop2

      Posted

      Hi Mollypop, that's a very good description of the acute phase of vertigo! It's exactly what I experienced in the two periods of BPPV I've had in my life. It does indeed feel as if you're falling, even when you're hanging onto something. This even goes as far as that terrible feeling you get in the pit of your stomach when travelling in a plane that's fallen into an air pocket. 

    • eleftherio33095
      eleftherio33095 Mollypop2

      Posted

      If I understand correctly that you have been having continuous nystagmus for eight weeks, than this suggests a central etiology (brain). A peripheral cause would have adapted by now. A neurotological consult is indicated here.

      Eleftherios S. Papathanasiou, PhD FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.