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VN for 6 months. INTENSE brain fog derealisation. Please help!

Posted , 4 users are following.

Scentless
Scentless

Hi all,

This is my first post here but I have been lurking here for months since the onset of my dizziness in January. The threads about these horrid disorders have been invaluable in making me appreciate that there are others going through similar things.

I have been diagnosed with VN by an neuro-otologist. In many ways, my experience has been textbook. Sudden onset of rotational vertigo which lasted for a week or so and then subsided to leave a general (difficult to describe) feeling of unsteadiness, very off balance when turning head, uncomfortable in busy or crowded environments etc etc. The dizziness has improved a lot, sometimes I barely notice it.

However, the most debilitating and scary symptom that I am left with is what I can only describe as brain fog which is with me constantly.

I understand that this can be a relatively common symptom as the brain compensates through VRT, however, the extent that this affects my life is huge. I have had to quit my job due to it. I feel like my brain is completely broken. The simplest of tasks are completely daunting and overwhelming. I literally feel like my brain cannot cope. I can't have follow conversations or storylines in TV shows. This has made me avoid socialising almost completely. This is coupled with a very disconcerting feeling of derealisation/ being disconnected from my surroundings. Because of these symptoms, I am very anxious and low and am taking an antidepressant.

I would love to hear from people who are experiencing similar symptoms, I have been assured that this will improve over time as the brain continues to compensate. However, I am struggling to believe this as these symptoms are so intense and it feels like my brain has actually changed somehow.

Wishing you all well. Xxx

0 likes, 11 replies

11 Replies

  • rocksolid
    rocksolid Scentless

    Posted

    I know you said you have VN but consider that your neck might be an issue. Look up trigger point for SCM muscle which is in your neck.
  • Scentless
    Scentless

    Posted

    Thanks for the response rocksolid.

    This is definitely something I have considered, however, I think my case is very typical of a nasty bout of vestibular neuritis from the pattern of onset etc. Also I have undertaken significant vestibular testing which shows a weakness in my right ear.

    Very interesting suggestion though and I will certainly read into it some more.

  • amanda95449
    amanda95449 Scentless

    Posted

    Hi Scentless, I read your post and although i don't have VN i have struggled through the exact symptoms you have described through other vestibular issues. The derealisation and brain fog are the symptoms i found most difficult to deal with and they also affected my entire life.. i experienced these symptoms for about a year and two months before things started to clear up very slowly. When you're experiencing them you think you will be stuck in this mind set forever. I was depressed, left work, couldn't cope socially, could not follow conversations.. just like you. But it does ease. It doesn't happen overnight but more so over time. It's been two years since it all began and the brain fog and derealisation have decreased by 70%. Even when you think it won't get better, it will in time. The best advice i can give is just keep doing things that you can, try and keep some regularity and normalcy in your life where possible.

    • Scentless
      Scentless amanda95449

      Posted

      Hi Amanda, thank you so much for your response. I'm sure you understand from your experience how lonely it can feel and it seems like no one understands what we're going through. Just to hear that someone has experienced a similar thing and is hopefully on the other side of it is so encouraging.

      What was your diagnosis in the end if you don't mind me asking? Also, did you find any supplements to be beneficial at all?

      Thanks again xxx

    • rocksolid
      rocksolid Scentless

      Posted

      I suggest you go to facebook and do a search for VN. There are groups you can join of people with the same issue.
    • lily65668
      lily65668 Scentless

      Posted

      So sorry to hear about your suffering. I can't offer any help on VN as I've never had it. However, I do know just how debilitating vertigo can be, as I've had two attacks of BPPV in my life. This is unrelated to VN, except that it also affects the inner ear, but vertigo is basically the same for everyone, regardless of the cause. I had to wait about a year for the first attack to clear up spontaneously, and couldn't get a diagnosis.

      I got lucky (well, relatively) this last attack, which started at the beginning of this year. After a fruitless visit to an ENT, who didn't want to hear about it, my GP referred me to a very good physiotherapist, who fixed it on the spot with the Epley manoeuvre.

      This attack only lasted two months before I got it fixed, and I knew exactly what it was this time round, but I was still amazed at the amount of brain fog I was suffering. I asked the physio about it. He said that all vertigo, whatever the cause, tends to cause brain fog. He explained that this is because the wrong signals about head position etc. coming from the inner ear put the primitive parts of the brain into constant low-level fight-or-flight mode, even when our higher intellectual centres understand what's going on. This causes a steady drain on our brain functioning and slows everything down.

      The good news is that it all sorts itself out once the vertigo subsides, so hang in there!

    • amanda95449
      amanda95449 Scentless

      Posted

      Lonely, scary and feeling like you're losing your mind. Unfortunately i didn't know these forums existed till after i started improving but it is great you have found them. I noticed someone wrote something about a facebook group. Definitely search facebook - there are some great support groups out there. It's very comforting when you realise you're not alone.

      I still haven't received an official diagnosis. My symptoms began after a sudden attack of extreme dizziness and nystagmus (eye movement). Since then my brain and eyes have never felt the same and i still have residual symptoms. The doctors have considered either vestibular migraine or episodic ataxia. I was taking Doxepin for a few months and i thought that helped a little.

    • Scentless
      Scentless lily65668

      Posted

      Hi lily, thanks for your response and I'm so glad that you're over your vertigo. What a relief that must have been!

      What your physio says about the brain makes a lot of sense and when I'm in a logical frame of mind l can completely understand and agree with it. However, it concerns me that my actual vertigo/dizziness has all but gone. I hardly notice it except for a slight unsteadiness and some wobbly vision occasionally but the brain fog and derealisation are still so so intense! I would have thought that as the dizziness improves, so will these feelings but they are still as bad as ever.

      When I am in a panicky frame of mind I get terrified that this will never improve. I can't hack the idea of feeling like this indefinitely.

    • Scentless
      Scentless amanda95449

      Posted

      That must have been so scary for you. I'm so sorry that you've been through such a long and horrible ordeal. It's really encouraging that you are improving though, even if it is extremely gradual.

      Having access to other people experiencing similar issues is certainly comforting. I am one of those strange people who doesn't have Facebook but perhaps I will change my mind on that so I can access these groups.

    • amanda95449
      amanda95449 Scentless

      Posted

      It really was but i have gotten through the worst of it. When months go by with no improvements it's hard to stay positive and keep the hope that your symptoms will improve cause it's not something you can really measure but i'm proof that it does get better :-)

      Ha yep join facebook just for the groups!

  • Scentless
    Scentless

    Posted

    Im just going to piggyback on this thread rather than starting a new one with something else I forgot to mention originally.

    I have got this vision issue which I haven't really seen described anywhere else. When my head is completely still and I try to look at something small or far away, it's like my eyes are moving on their own. I haven't got any visible nystagmus anymore and have even tried to video my eyes when this happens and can't see any discernible movement in the video but my vision feels like my eyes are jerking (not rhythmically) away from whatever I try to focus on. I hope that sort of makes sense?

    Another thing is that my eyes feel 'dazzled' all of the time. Like the vision you get when you've just come out of the cinema. Also if I look at something and then look away, I can see an outline of the thing I was looking at.

    I think these weird vision things are definitely contributing to my weird brain feelings! Does anyone else have these sort of symptoms too?

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