Hi everyone,
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.
Maura
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.
Hi Rachel,
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.
Maura
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.
@rachelknauss Hi, sorry to go off topic for this thread, I don't have enough posts to PM. My mum is currently in hospital after having started visually hallucinating not long after beginning to take prochlorperazine for vertigo, was this the medication you also had this issue with? Cheers - Sam
@maurabcn I’m having 100% the same symptoms you described. I’m posting now because I can’t sleep! The hypnagogic hallucinations and nausea are freaking me out.
Did you ever find out more definitive info on what is going on? How it’s treated?
I’m interested to know an update.
I have the same exact issue. I was diagnosed with Vestibular Migraine. I am going on 4 months of constant battle of floating, rocking, along with closed eye hallucinations- causing me to have panic attacks at night. The hallucinations came on about 3 weeks after my vestibular migraine started. Going to sleep is a nightmare for me. I see complete nonsense hallucinations. They’re vivid, and keep my up at night. I also too have vivid dreams and nightmares. I am working with an neurologist as well as vestibular rehab. So far, no answers and lots of “I’ve never heard of anything like this before”.
If you ever get diagnosed, I would love to know with what. And I will let you know if I am diagnosed eventually too. I have an MRI today, but it looks as if I will find nothing..
Good luck on finding answers. I know how much of a hell ride this all is.
@mollierosen11 I also have faced the same issue for two years. At first, I consulted the ENT specialist, who prescribed some medications and advised me to avoid situations that worsen my migraine. Such as skipping sleep and food and doing strainful exercises. The two weeks went satisfactory to the effect of medicines, but after that, I again felt the same headache. The doctor referred me to a neurologist, who found that the migraine was related to vestibular. He suggested a physiotherapist, and I started vestibular therapy for migraine with his help. The first days were horrible; even I can't imagine the pain I experienced. But after two weeks, the severity of the pain comes low, and now I lead a headache-free life. So happy.....
Hi all, I am giving an update on my current situation. I was diagnosed with VN, epilepsy and finally vestibular migraines. I spent 1 year dizzy and nauseous 24/7, on the wrong medication for epilepsy, lost 20 pounds but finally went to another neurologist who put me on the right medication. However, he can't explain my nocturnal episodes and he thinks it is unrelated... I am taking an anticonvulsant at bedtime, so I can have a full night of sleep. I also take 2 other medications and 3 supplements. After almost 2 years, I have my life back. It took 7 different doctors to find a response and 7 days doing an EEG at the hospital. Do not give up! There is something out there that is right for you.
@minemax I've got the same thing. It started with memory loss, over 1 year, I then had a vertigo episode and 2 days later am having horrible hallucinations at night. Did you get better,and how?
@perplexed i have developed tons of sleep
onset issues .. myoclonus , adrenaline rush , exploading head … they all started with hypnagogia at sleeponset .. how have you ever controlled this ?
@mollierosen11 I’m experiencing the same … but I am from the myoclonus group my issues have turned into hypnic jerks as well . It’s awful .
Sleep disorders are very common among people who have chronic migraine (vestibular or otherwise). Chronic migraine can lead to all sorts of symptoms associated with sleep: insomnia (difficulty falling and/or staying asleep), nightmares, night terrors, panic attacks, restless legs, periodic limb movements, hypnagogic hallucinations, sleep paralysis, and more. The tricky thing is that these symptoms often occur without headaches, obscuring migraine as a potential cause. If you also experience dizziness, vertigo, rocking, swaying, etc. then the culprit is very likely to be migraine. Another common feature of migraine is that laying down can often exacerbate the symptoms. The doctors that are more likely to be aware of this are neurologists who specialize in sleep disorders or migraine. If migraine is the cause of these symptoms, and they occur frequently, then trigger avoidance and migraine preventive medications (such as amitriptyline, nortriptyline, verapamil, topiramate) may be needed to reduce the frequency and intensity of these symptoms. Some people may find taking an NSAID (such as ibuprofen, celecoxib, naproxen) before bed to be helpful as well. Hope this information helps.