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Vertigo, nystagmus, questions!!!

Posted , 10 users are following.

alyssa88193
alyssa88193

About 4 months ago I woke up and knew something wasn't right. Trying to get out of bed I felt like I was drunk and collapsed, crawling to the bathroom. My left ear felt clogged and I can't describe the dizzy sensation better than being on a boat in the middle of a hurricane. This lasted weeks, I saw my PCP the first day and they instantly called it Labyrinthitis and sent me on my way. Of course the meclizine they gave me causes migraines so I can't take it.. Nothing I've tried helps.. 4 months later the vertigo is more severe than it was to start, but only comes with fast head turns. My bed has become a bad place to me because when I lay down the vertigo hits the worst. My ears dont feel clogged anymore and for some reason the left side that was clogged day 1 is fine, and the vertigo is the absolute worst when I lay on my right side. I was finally able to record the nystagmus and see that my eyes actually look like they're twisting or rotating rather than going up and down or side to side.. The vertigo doesn't feel like a boat anymore either like it did in the first few weeks, now it is intense spinning in my head. I'm not sure if the room is spinning or if my brain is spinning inside my head. It's just intense horrible spinning for about 30 seconds sometimes a minute. I am going to see an ENT in a couple of weeks but want to know if anyone else has experienced this wide array of symptoms and knows what this could possibly be?! I just don't understand why the symptoms seem to have changed so drastically from 24/7 boat ride to extreme spinning when I lay down. It seems to have traveled from the right side to the left side too? I definitely had a clogged left ear the first day of this but the left side has no symptoms anymore. My right ear was never clogged. It doesn't seem to ever get better. Meclizine and Dramamine don't work whatsoever. Is there any relief? Any meds that work? I'm starting to obsess over this "will this make me dizzy? If I do this will I be dizzy?" And it's making me extremely anxious.. If anyone is familiar with nystagmus and is willing to look at the video to tell me if this is normal please respond with an email address. Thank you!!! I appreciate any help.. I am a bit scared as to what this could be and don't know where to turn..

0 likes, 10 replies

10 Replies

  • nikki1978
    nikki1978 alyssa88193

    Posted

    Hi Alyssa,

    If you can see a neuro-otologist, that might be the best thing for you.  They specialize in the inner ear and might be able to help you.  I've been dizzy and lightheaded and feel like I'm in a dream.  It's a horrible feeling.  I sure hope you can find some relief.

    Take care,

    Nicole

  • jason61983
    jason61983 alyssa88193

    Posted

    I second what Nikki said. Neuro-otologist is who to see. I am seeing one in April. Seen 2 ENT's and they were clueless when it comes to dizziness. Please still make sure you see the ENT as they will refer you to neuro-otologist. Don't won't to worry you but the ENT could be helpfull in finding other issues that may be causing or making your symptoms worse. I found out I had severe sleep apnea. Best wishes.
  • lisa215
    lisa215 alyssa88193

    Posted

    Hello.

    I had something very similar to what you are describing and mine was BPPV. The nystagmus will rotate towards the affected ear and is typically made worse by head movements. The Epley manoeuvre is the treatment fir this as its the quickest way to move the crystals out of the canals. I was left with an unpleasant sense if disequilibrium even after the initial rotational vertigo stopped. I've had mine for about 26 months now and I still get the occassional spin out. Its not a nice condition but it is extremely common and there are things that help like exercise and making sure you are well hydrated. Exercise especially as anything that requires movement will help the brain compensate for the messed up messages from the ears. It will get better, staying calm will help a lot.

    I wish you well.

    Lisa x

  • helen_04574
    helen_04574 alyssa88193

    Posted

    Hi, I've had room spinning vertigo (labyrinthitis) before and styed in bed for a week, it was quite severe.  I may have been an ear infection.  I have also had BPPV which is benign postional vertigo, this is different to labyrithitis as its postoinal vertigo when moving head, especially when crossing the road.  Postional vertigo can come at the end of labyrinthitis though.

    If you are needing to speak to the NHS 111 number is good for a second opinion. They can get a doctor to call you back to discuss your symptoms.

    I had severe anxiety with vertigo, who wouldn't?  It can be stressful and cause anxiety.  What has helped me with these is meditation, I was a skeptic at first but it helped me calm down and relax.  There are free guided meditations online so doesn't have to cost anything. xx

  • paula59
    paula59 alyssa88193

    Posted

    Hi Alyssa

    I started with severe dizziness, I have had vertigo on a few occasions, but this actually was dizziness, I had bad sinuses, splitting headache, weird eyes, very tired, sick, and GP had no idea what was wrong.  I waited and had a scan which came back normal then saw several ENT.  They were useless.  I had had this a few months by this time and like you was terrified.  I then saw neuro surgeon who referred me to neurologist.  It took a year and two panic attacks before I got a diagnosis of silent migraine.  I was pleased because I thought it was something really serious.  I am now under two neurologists one who is a headache specialist.  Ive had this two and ahalf  years now.  Theyve tried diff medications but nothing so far has got rid of it.  However, anxiety makes it much worse and I have managed to calm down.  I doubt the ENT will help you, but they will refer you to next stage.  It seems its really common.  I had never heard of anyone being dizzy 24/7 but we all are for different reasons.  Hang on in there and let us know how you get on.  It will get a bit better, even the diagnosis helps, then you know you are not going mad. There are lots of reasons for dizziness unfortunately, but hopefully they will get to the bottom of it eventually.  x

    • nikki1978
      nikki1978 paula59

      Posted

      Hi Paula,

      Do you ever feel like you're in a dream?  That's one of my worst symptoms.

       

    • paula59
      paula59 nikki1978

      Posted

      Hi Nikki - no ive never had that, but actually Ive read about that on this forum just this week.  Two people had it and they actually named what it was.  If you read back thru then Im sure youll find it.  It sounds horrible and I hope I dont ever get it.  The dizziness has stopped my social life completely and makes working difficult.  Do you have that all the time ? 
    • nikki1978
      nikki1978 paula59

      Posted

      I had the dizziness badly in 2012 and it started to finally get better come 2013, then that summer I almost felt more myself until at the grocery store in Sept 2013, where I felt so detached and thought I was dying.  I think maybe the dizziness or lightheadedness was causing me some panic.  Ever since then, I've had dizziness always hanging around there in the background and in big open spaces I feel funky and it still scares me.  Have you been to a neuro-otologist?
    • paula59
      paula59 nikki1978

      Posted

      Ah I see, before I got my diagnosis, I was supposed to start a new job in manchester city centre, I was convinced I had MS and got ready to go to new job, it was the hottest day of the year, I couldnt take my car and I had to go on the bus.  All the way on the bus I got hotter and hotter, I got more and more panicky.  By the time I got to manchester, I felt so dizzy and sick and when I got off, the street became a massive open place and really weird.  It was like having aggrophobia (I think, Ive never had it) and I started to pass out.  I went to the new job for 5 mins and had to leave.  I had to phone hubby to come and get me.  I can only imagine that was a panic attack.  But the world looked weird and very open. I went to bed but it took me days to get over it and the next day I went to A&E as I was so scared.  I told them and I managed to get my neurologist appmt brought forward to the next day.  That was when he told me I had silent migraine which I get with and without massive headache.  He confirmed the panic attack.  Ive had that once before when a boyfriend I really loved dumped me and I noticed the world went the same way.  All big and open and weird.  I think thats just the way your brain responds at times of panic. Not seen a neuro-otologist.  Im still dizzy every day.  Dont notice it so much at work but when I come in and lie down, then get up Im very very dizzy.  Shops make me very dizzy.  Yesterday was a bad day for shopping had to put dark glasses on to continue looking for a glass bowl.  Nearly left but needed the bowl.  The lights are horrendous. They give me physical pain in my eyes, sometimes my phone and PC does the same.  I hope thats helped.
  • Terry6872737
    Terry6872737 alyssa88193

    Posted

    I second Lisa, sounds like BPPV. Classic symptoms relate to onset of vertigo based on head shifts or positions. Epley will clear it up if it is intact BPPV. Most ENTs are useless in its diagnosis or any inner ear issue.
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