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Vestibular Neuritis

Posted , 17 users are following.

care31788
care31788

Hi all: I am really hoping someone can help/assure/calm me right now. About 3 months ago (Nov 1). I woke up one morning and did not feel dizzy but definitely off. Groggy, lighheaded, wonky I guess you could say. I can describe it like how it would look if you were standing at the top of a tall building. Things just looked foggy to me. It scared the hell out of me. I waited about 2 weeks because I thought I was just tired. It wasnt going away so I went to the emergency room and the first thing he did was check my ear and told me it was red and inflammed which is causing me to feel wonky. He said it was a mild Vestibular Neuritis. He said it's just viral and it will go away on it's own. Well, I have gone to my family doctor about 5 times since then JUST to have her check in my ear. It's now February and she still sees that it is red and inflammed. She said she doesn't want to just throw antibiotics at it because it DEFINITELY is NOT an infections and that it is viral. She said she also does not want to prescribe dizzy meds because if the room is not spinning then she doesn't want me to take them. I feel like I'd rather feel dizzy than feel this!!! How long does this "viral" crap last???? I have not felt ANY inprovement since it started. Unless I am just used to feeling this way so it doesn't seem as scary anymore?? The only way I can describe it is that I am the most tired I have EVER been in my life. (gone for TONS of bloodwork and I am totally fine everywhere). SO just super tired and I have MASSIVE sensitivity to certain lights. I work under one at work and maintenance had to come in and dim the light for me. It's so frustrating because people look at me and automatically know that something is wrong with me because they see I am trying to focus on their faces. It's been like 4 months and I can't even deal with this anymore. My doctor seems as if she is fed up with me which I hate because I obviously wouldn't be going there if there weren't a problem. Last time I went she said the ear was still red and that she was going to send me to an ENT specialist. I have been waiting SO long for this appointment and it is finally on March 3. I just have the strongest feeling they are going to send me away AGAIN saying I need an MRI and then I have to wait even LONGER. My husband and I want to try and have a baby and we have totally put our lives on hold because I don't want to be pregnant and not being able to go for these tests that you can't go to when pregnant. I just want answers. I'm so upset. I know it's not vertigo because things aren't spinning. It's so hard to describe sad I'm just so tired and have a foggy head and sometimes that same ear aches and even that side of my head aches too. And forget being under certain lights. Does anybody know what I am talking about?? Please help me. I'm so nervous about going to this ENT as well because I don't want them finding anything super serious. I am so scared from all of this and I just wish I could get some answers. Will the ENT confirm that it is in fact VN? My doctor hasn't confirmed that. She just keeps saying "it's red and it's viral." I am so fed up and so sick and tired of feeling tired and foggy and wonky. Hopefully someone knows what I'm talking about and can relate??

0 likes, 26 replies

26 Replies

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  • janett
    janett care31788

    Posted

    Hi all.

    So my nightmare started after a dentist violently pulled my tooth. Gave me antibiotics, because it was infected and said see ya in 2 weeks. I was fine up to a week later...then I woke up at 3am to a spinning bedroom. Soooo scary. Had BPPV for 2 weeks and now has turned into a dizzy, migraine mess. My ear is full, load and the head pressure is hard. My neck is a mess and I get headaches. Was told I have labryithesis, meiniers, hormones (haha) etc.

    This has been going on since mid january. Can anyone relate? So glad I found this site. Thanks.

  • cassie21714
    cassie21714 care31788

    Posted

    I have a lot of the symptoms you are describing. As soon as I go to shopping centers I instantly feel sensitvity to light and I get so unbelievably dizzy as well as being in large crowds. I get the foggy feeling from my anxiety and when I look at things it is hard to focus. My dizziness is so so so bad at night time when I lay down in bed and also around loud noises. I sometimes feel like I am swaying when I'm standing, I have to look to the ground when I walk to make sure I don't fall and I also feel very tired. I just went to a dizzy center yesterday and she confirmed (after a year of having these crappy symptoms) that I have vestibular neuritis. It all started last year in March when I got a cold and I went out for my birthday, when I got home that night the room was spinning and I was lighteheaded and everything just didn't look right. After seeing about 6 different doctors whom have said to me it could be vertigo, bppv, labrynthitis, also having an MRI which came back 100 % fine, all blood results were fine had an ecg done on my heart that was 100% perfectly fine. I developed anxiety and panic attacks over this crappy stuff and now finally feel relieved after a year that I know what the problem is because local GP's could not work it out as they weren't trained in the ear field. I have started vestibular training and hope to be on the mend soon, although I still know I have a long way to go. Also just want to say don't let anyone tell you that "oh it's just anxiety or you are making this up in your head, your not dizzy you just think you are" because so many people said that to me, and you are YOUR OWN person, you know when something isn't right. Try not to stress because if everything else is fine with your blood, brain and heart, it is most certainly probably an ear problem. If you guys have any dizzy centers whereever you are, I suggest you see someone who specialises in vestibular disorders and balance disorders because they are very very well trained in this field. Hoping you get better and are on the mend soon, it truly is the worst feeling ever and just know that you aren't alone. 
    • paula59
      paula59 cassie21714

      Posted

      Thats interesting, my symptoms are very similar to yours especially with the lights problem and obviously the dizziness and Ive been diagnosed with silent migraine.  Had loads of meds and none work (had this two and a half years now).  I have two neurologists but I think i will ask to go to a dizziness centre, I know there is one in Liverpool and Im in Manchester.  Its been worse yesterday and today but then my boss has been horrible and it might be due to stress plus Im on a diet.  It always seems worse when Im trying to diet. 
    • cassie21714
      cassie21714 paula59

      Posted

      I had every test done under the sun done at the doctors so I never once heard anything about silent migraines. It's funny because doctors were telling me all these different things and saying it could be this it could be that. When I went to the specialist at the dizzy centre she did lots of exercises on me to test and see where the problem was and she found something and diagnosed after being there for 20 minutes. I highly recommend seeing someone at a dizzy centre they are professionally trained in that type of field and won't dilly dally around stuff
  • smudgedog
    smudgedog care31788

    Posted

    my mother has been suffering dizzy spells recently,which frighten her and leave her feeling nauseous , she also says it affects her vision,meaning she's unable to focus on things, any suggestions?? x
  • s75886
    s75886 care31788

    Posted

    I just came across your post, and I had to reply even though it's rather late. I  have been through the same nightmare twice for months at a time, and I just want to reassure you that you will get better! If the reason for your dizziness is peripheral (ears), your brain will eventually compensate for any balance deficit. Even people who undergo surgeries removing the entire balance organ from the ear eventually recover. The thing is that you have so many other symptoms ( foggy thinking, fatigue, lightheadedness, sensitivity to light, etc)  that point to vestibular migraine, but this is treatable as well. My headaches are on one side of the head only, and often feel like ear ache - just like you. I know how hard it is to be in your situation, to feel helpless while doctors seem to dismiss you. You are not alone. As women, hormones are often to blame for this garbage. I really want to encourage you to monitor your cycles very, very closely - chart everything and use ovulation predictor kits (you're trying for a baby anyway, so why not?) smile . Do your symptoms worsen or change across your menstrual cycle? Is there a pattern? Did you notice if your cycle changed drastically when you started having these dizzy symptoms? Mine sure did, and they've never gone back to normal - I went from a 31 day cycle to 23 day cycle, and we've had big fertility problems. They finally found that I'm hypothyroid, and that every time my estrogen goes up, my thryoxine nose-dives (TSH shoots up). For me, this not only lead to migraine, but eventually seizures... and to at least 10 early miscarriages. But I'm finally getting treatment and we have hope! Please get a doctor to test your thyroid (TSH, T4, T3), and make sure you do it during late follicular/ovulatory or mid-luteal time of cycle (not day 3 of period as they often insist upon - which is why they missed my problem for years...). If your thyroid comes up normal (we want a TSH below 2.0 for pregnancy), one thing that totally snapped me out of my first attack like this was going on the birth control pill (I felt normal within 1 week after 4 months of dizzy nightmare). Like you, I am trying for a baby, so this is not an option at the moment, but please take comfort in knowing that you will feel better eventually.  If they have not yet found any bona fide neurological signs/problems (they are good at spotting them), a top neurologist told me that the chances of finding anything on an MRI in a dizzy patient is less than 1/1000. I also want to suggest that you make sure you sleep in total darkness and minimize time in front of the computer (and screen should be on dimmest setting). Very best of luck!
  • dawn59672
    dawn59672 care31788

    Posted

    Hi Care!  The extreme tiredness in your case got my attention and the sensitivity to lights.  I have been fighting severe tiredness since early 2011.  It all came on suddenly and I do not know if it started after a virus or not. Tinnitus has been going on alot longer.  ANyway, at somepoint along the way I also had light sensitivity too.  What helps me with the tiredness, (and I think indirectly helps every thing else) is to have my digestive system working better.  At first the doctor prescribed Miralax.  It was then I noticed that if I was severely tired and took Miralx I could wake up enough to be safe to drive. But with the Miralax it was hard for me to regulate (too little . .  tired, and too much. . .too much bathroom time.)  Probiotics have helped greatly since!  I believe the probiotics helps me absorb more nutrients which helps with the tinnitus (iron).  And, this is just my opinion, but I believe a healthy digestive system also helps prevent auto immune type disorders, which may have something to do with the sensitivity to light, among many other symptoms.  Probiotics also helped me get rid of heartburn at night and acid reflux.  For years I was stuck laying on my left side!  So for me, it is still a battle, but I have found some great relief, especially for the tiredness so I thought I would share that and I certainly hope you give it a try.  I started for a month with the Pearls Probiotics (High Potency) and now include a Probiotic 10 also in my daily diet.  God bless and I hope that helps, and I hope that we can all get to the bottom of this all!  I know there may be more to my puzzle, but this is where I am at so far and much improved!

     

  • frances32632
    frances32632 care31788

    Posted

    Care, DID YOU ever find out what it was? Did it get better?? have very similar symptoms to you, a constant swaying sensation, has it for nearly 3 months now, feels like I am on a boat, I get relief from it when I lie down. I have had an MRI and nothing showed up, going to a balance clinic in 4 weeks, just such a slow process! It definitely affects my vision even though my eye test revealed that my eye sight is fine. I am 43 with two young kids mans am finding this all so hard and upsetting. Going into shops makes it ten times worse instantly!
    • amanda75335
      amanda75335 frances32632

      Posted

      Hello Frances,

      ?I hope you don't mind this message as I see you posted over a year ago on the forum.

      ?Its just to check in with you and see if you have had any improvement since your last post, as it seems I am suffering exactly the way you are describing things.  Just wanted to see if there is any hope!!

      ?Best wishes,

      ?Amanda x

  • pili41981
    pili41981 care31788

    Posted

    Did you get better
    • unlikelypilgrim
      unlikelypilgrim pili41981

      Posted

      It has taken me over a year to get really well; driving and walking without a cane. I lost the hearing in my left ear plus my perpheral vision. I cannot see sideways when looking straight.. It's tough to walk straight and simultaneously look to my left and right. It's beter when sitting. i experience double and hazy vision. My balance keeps improving; better indoors than outdoors. Going to grocery stores is worse for my vision and balance.

      Physiotherapy has been my saving grace. My vestibular physiotherapist has been awesome. Without her expertise, I would still be homebound and still walking with a cane. She is brilliant. We have worked extremely hard together to get me to this point. I am about 75% from where I was before I suffered the vertigo attack.

      I have accepted the fact that I shall never be 100% but I continue to work hard and push hard to keep the improvement going but I know my limit. There are days when my vision is not as good and quite groggy in my balance. When that happens, I stop everything and lie down. It's a long road but you will adapt and keep improving.

      People around you have to be understanding. Tell them what you are going through. They may be supportive.

      All the best.

      Nash.

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