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Vestibular neuritis is back...please help

Posted , 5 users are following.

olivia52399
olivia52399

Hi All! I've been diagnosed with VN (unilateral left-side) and BPPV, the latter of which I believe I no longer have. After 4 or 5 months of suffering from VN symptoms, I had a bout of BPPV (I believe that was provoked by election-related stress, so just a few weeks ago), which went away after my vestibular rehab therapist performed the epley maneuver on me. After the BPPV episode, which I recovered from by November 12th, I got back to feeling 95%, sometimes even 100. I was feeling great for about 1.5 weeks, but the day after Thanksgiving, I woke up knowing that I was not doing as well. Since Friday, I have had symptoms that have actually just gotten worse instead of getting better. The symptoms I am now experiencing are:

-The feeling like I am walking on a trampoline

-The feeling that I am walking on pogo-sticks

-The feeling that the ground is dropping below me

I did some VT when these symptoms first began again, which helped the feeling that I had on Friday - that my brain was swimming in my head. But the VT hasn't helped these other symptoms. Do any of you have similar symptoms? Does this sound like BPPV or definitely my VN? It feels like neuritis. I don't understand why I was able to get to 95%, and now these symptoms have come back and I feel like I am at an 80%. I know that doesn't sound terrible to many of you, but I have gone through months of much worse and the fact that I can get so close to normalcy and be pulled back so easily is depressing. I am not looking for encouragement - it seems like I have told myself everything there is to say. I am hoping that some of you who have experienced these symptoms can let me know what your diagnosis is and if anything have given you relief. Thank you.

0 likes, 11 replies

11 Replies

  • angie_69215
    angie_69215 olivia52399

    Posted

    Hi Olivia,

    I was diagnosed with BPPV, Vestibular Neuronitis.

    My therapist performed A Epley Maneuver last Tuesday and the day after I felt exactly want you are describing . I couldn't get out of bed because I felt so sick and very nauseous.

    I feel better today used a sinus nasal spray and I feel normal again.

    I hope you feel better..

  • melody08508
    melody08508 olivia52399

    Posted

    Very typical of VN. I had good and bad days, then three weeks of feeling 100%! And then just like that a month of feeling rubbish again with similar symptoms to what u described. My ENT said that common but also said anxiety hinders us a lot in our recovery. It could be that it anxiety is quite bad, making u feel worse
  • eleftherio33095
    eleftherio33095 olivia52399

    Posted

    If I understand your description correctly, are you describing symptoms that involve you (seemingly) or the environment moving in a vertical direction, instead of spinning?

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

    • olivia52399
      olivia52399 eleftherio33095

      Posted

      Yes, it feels like I am on a turbulent plane that is moving up and down while I'm in it. I met with an Neuro ent who diagnosed me with BPPV of the posterior canal. I received the epley maneuver. I also have VN, and after I received the epley I had several days of feeling just a little off, though I didn't have the sever spinning or nystagmus. I assumed that the BPPV had provoked my neuritis because these symptoms did not seem like BPPV (trampoline under me, floor dropping, plane turbulence), so I decided to do my vestibular therapy. i have progressed to the end of VT so I am doing exercises that involve throwing a tennis ball high up and catching it. I wonder if this had caused the prolonging of BPPV symptoms. I have read that after receiving the epley some patients are still symptomatic in lesser ways for a week or two, and I had gotten so much better after the epley, but then started this VT again. Hoping that if I stop the tennis ball VT the BPPV Symptoms (or what I think and hope are BPPV symptoms) will go away. Any thoughts?

    • eleftherio33095
      eleftherio33095 olivia52399

      Posted

      Actually, it is the neuritis that provokes the BPPV.  As the Epley worked, you must have had at least some form of BPPV.

      The reason you have left over symptoms is that your vestibular system had got used to having the BPPV there.  Now with the BPPV gone, the vestibular system has to recalibrate, and the VT is designed to help with the calibration.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • olivia52399
      olivia52399 eleftherio33095

      Posted

      That is very interesting, I so appreciate your response and expertise. It's weird that I actually feel like the VT exercises I have been doing, which involve lifting my head up to the ceiling and down to floor, have made my BPPV symptoms worse, which my Vestibular Rehab Therapist warned me about. Apparently, surrent VT exercises should not be performed when an individual as BPPV. Do you have any thoughts regarding what types of exercises I should or should not do?

    • olivia52399
      olivia52399

      Posted

      Are there differences between BPPV that is provoked by up/down positions vs. side to side? How do the symptoms manifest themselves? My BPPV is definitely provoked by head-leaned-back and head-leaned-forward positions, which caused my neuro ent to say posterior canal.
    • eleftherio33095
      eleftherio33095 olivia52399

      Posted

      I agree that the exercise you are doing is not correct, and is probably bringing back your BPPV.  Was the exercise approved by your neuro ENT?

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • eleftherio33095
      eleftherio33095 olivia52399

      Posted

      Yes.  Side to side relates to the horizontal canal.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • olivia52399
      olivia52399 eleftherio33095

      Posted

      The exercise that I was doing was prescribed to me for my vestibular neuritis, not for my BPPV. The neuro ent did not give me exercises for my VN, but my vestibular rehap therapist has basically saved my life with her exercise plan for my VN. When I started feeling symptoms again after the Epley, I began to do my exercises for VN because they didn't feel like the normal spinning, nystagmous-y symptoms of the BPPV.

  • shelly78830
    shelly78830 olivia52399

    Posted

    dear olivia,

    i cried after i read your post. i am completely recovered, and i will share with u my experience. ok - some days maybe a 9/10, but thats my worst now. i was diagnosed with vn 8 mos ago, and was a mess - physically and emotionally. thankfully, where i live you can see an ent very quickly. after 3 mos of physical therapy for my vn i was feeling 9/10 every day. but then my vn gave me bppv, which my therapist says she sees all the time. this happened about 5 mos ago. i was doing some exercises i dont think i couldv done before my therapy started! but then, my bppv hit. my therapist assured me this was an easy fix she sees it all the time, and she did the epley procedure. the dizziness that i had been experiencing went away like THAT. it was a miracle. i started to play softball again. well...that made everything worse. i started feel like the ground moves up and down by 3/4 inches when i walk- like the trampoline feeling u described. i met with my therapist and she told me that maybe i started playing softball too quickly after my diagnosis (it is how i exercise, and i started playing about a week after epley bc i just felt sooooo much better). i stopped my softball and after 5 days i was back to 9/10, and now im at 10/10 almost every day. u will get there, hon. be strong <3

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