My name is Maura, I am 40 and I have been suffering of dizziness, nausea, tinnitus and nighttime hypnagogic hallucinations since August 2020.
I was misdiagnosed with ear infection at the beginning, until I went to see an ENT and I was diagnosed with Vestibular neuritis. I was taking 2 Valaciclovir pills a day but I kept having episodes. My last episode happened 3 days ago and lasted 16 days.
He has increased the dose to 3 pills a day and my dizziness is gone for now. I am seeing the neurologist in a few days and I will ask about the steroids (Methylprednisolone).
But... what the doctors can't explain is what happens during the night. And this keeps happening to me even if my dizziness seems to be gone for now: When I go to bed, I feel again some symptoms (warmth on the back of my head, nausea) and when I am falling asleep I have hypnagogic hallucinations, which wake me up, I feel the sudden nausea and the need of opening my eyes and mouth. Then I try to fall asleep and the same thing happens. And this lasts all night. The only thing that helps is Clonazepam but I don't like to take meds. I have no choice for now, as otherwise I can't function during the day and I need to work.
I would like to know if you have experienced this kind of feeling (very difficult to explain!!), where your body wants to fall asleep but your mind keeps it awake. I have been doing lots of research and I seem to be the only one.
Thank you and good luck. I hope you all get better.
Hi Maura, What type of hallucinations are you experiencing? Visual or Audible? I find it common in vestibular patients to hear noises and even things which sound like music or voices. I have had these myself for some time. The only time I had visual experiences was due to a vertigo medication I was on. It is also interesting that this is when you lay down - another common experience with vestibular disorders is this particular position is problematic, causing several symptoms such as vertigo. Is this the only time you experience this, lying down?
I hope your doctor is understanding and can start to narrow down what may be happening.
I am experiencing mostly visual but also audible. In my first episode I heard a song. Recently I saw the number 7 and random people talking. I also saw a plant and when I opened my eyes it was still there in front of me (or at least I had the impression it was there). It feels surreal. This only happens when I go to bed and I am lying down. I am falling asleep - I have the hypnagogic hallucination - I wake up. And this can last hours. I also have lots of dreams and nightmares. Today I went for an EEG. I am seeing my neurologist next Friday...
Thank you for reading me!! It feels good to know that we are not alone.