VN or BPPV recovery stories needed

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Hi. Back in September I woke up In the middle of the night and turned to my left side and experienced vertigo that lasted maybe 20 seconds. It only happened when I got up to have some water and a few minutes later when I turned to sleep on my right side. The next day I went to an ENT who said it's viral. The vertigo never happened again luckily but I've had residual dizziness ever since. I started VRT2.5 months ago and my vestibular rehabilitation specialist says I had bppv and definitely not a virus. So I am not sure who is right.

if I look back at where I was 5 months ago vs. today, I have gotten better and have more good days than bad days, however 1/3 of the month I have the residual dizziness. This whole thing is depressing. Please post about your VN or BPPV recovery stories as I need some encouragement at this point. Who has overcome this and how?

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  • Posted

    Hi Sharon,

    I've never had VN so don't know much about that. I have, however, had three attacks of BPPV, and I do know that doctors - including many ENT specialists - tend to confuse the different vestibular disorders.

    As you probably know, BPPV (benign paroxysmal positional vertigo) is caused by the crystals in your inner ear getting into the wrong place and sending wrong information to the brain about the position of your head.

    It typically manifests by a sudden attack of a violent spinning sensation when turning over in bed, lying down or standing from a recumbent position. The vertigo, during which your surroundings seem to spin, and sometimes accompanied by a feeling in your stomach as if you're falling (even when lying down) lasts a few seconds. Thereafter you find that every time you tilt your head into a certain position these brief attacks of spinning recur, and you may lose your balance completely and fall over. In between attacks of actual vertigo, you tend to feel a bit seasick and unsteady, as if the ground won't keep still under your feet.

    Untreated, BPPV wears off in a year or so, as the errant crystals get naturally dissolved. Most of the literature says two months maximum, but I know from experience - as do many other posters on here - that that's a bit optimistic!

    You can get it in both ears at the same time, but you'd have to be very unlucky for that to happen. My reason for bringing this up is that your post seems to be saying that you get vertigo when turning to either side. Normally BPPV only affects one ear at a time, so this would be unusual, and might indicate another diagnosis.

    The first time I had it - 25 years ago - I consulted an ENT doctor, who did all kinds of unpleasant, and I now know unnecessary, tests before diagnosing BPPV. He attempted some kind of manoeuvre which made everything temporarily much worse, with the result I threw up in his consulting room. After that it took about a year for the condition to completely resolve, though it started improving after 3-4 months.

    The second attack - in the other ear - started 14 months ago and lasted two months. This time my GP referred me to a specialist vestibular physiotherapist, who cured me in a few minutes by performing the Epley manoeuvre.

    I nipped the third attack in the bud about six months ago - swapping ears yet again. The dentist was using the old-fashioned, low-speed drill for a particular job and I immediately started getting vertigo. I then remembered that this was how the first attack started, 25 years ago, and immediately stopped the procedure. The vertigo cleared up after about a week this time. Low-frequency vibrations can trigger BPPV in some individuals. A couple of people on here have even reported getting it after starting to use an electric toothbrush. A blow to the head may dislodge the crystals too, but in most cases there's no identifiable cause.

    I have to say that from your description - apart from the fact it started when you turned over in bed - it doesn't sound like typical BPPV, as it seems to be affecting both sides. However, the average vestibular therapist tends to be much more knowledgeable about vestibular issues than most ENT doctors. The important thing is that it's improving. Both VN and BPPV will eventually clear up spontaneously.

    If the improvement doesn't continue, you might want to consider seeing a neurotologist (as opposed to a neurologist). They're the ultimate experts on diagnosing and treating vestibular disorders.

    Just one word of warning. You might find instructions on-line about doing the Epley manoeuvre on yourself. Don't be tempted. It's a very precise manoeuvre that should only be carried out by, or under the supervision of, an experienced practitioner. You can make yourself feel terrible if you get it wrong, though the ill-effects only last a few hours.

    I'm now absolutely fine after my three attacks of BPPV - two in the left ear, one in the right. I'm sure former VN sufferers will come in with equally reassuring stories.

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    • Posted

      Hi lily! Thank you so much for your post! It’s so informative and helpful. 

      I did go to the dentist about 3 weeks before I got the vertigo, and he removed my permanent retainer and used the drill a bit to remove the leftover glue from the retainer. I’m not sure if that’s the cause of the vertigo as it was a few weeks earlier. 

      So from what your saying if you have BPPV in one ear you would only get the spinning/vertigo when turning to one side ?

      Did you get residual dizziness after the vertigo is gone? Did it fluctuate... so Did you have good and bad days? 

      The 2nd doctor I saw 2 weeks after the vertigo attack told me it was BPPV and he did the epley but at that point the vertigo was gone and he couldn’t see any eye movement. 

      I wonder if it really is VN, because I didn’t have a cold, flu, sinus or any infection prior to the onset of vertigo as I read that VN usually happens after an infection. 

      My vrt specialist told me my eyes lag behind a bit when my head moves... been doing the exercises religiously for 2.5 months and I was kind of hoping when I had started them that I’d be back to my normal self in a few weeks! I guess i was too hopeful! 

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    • Posted

      Hi Sharon,

      Just to clarify - since BPPV is essentially a one-off freak event, it's highly unlikely, though not impossible, you'd get it in both ears at the same time. The essential symptom of BPPV, which expert practitioners test for, is that when you turn your head to the affected side while lying down this will spark a short, sharp episode of spinning. Therefore if you really have BPPV you'd only get the spinning effect when turning onto one side when in bed, not both. Unless, as already mentioned, you were extraordinarily unlucky and got it in both ears at the same time!

      And no, the vertigo doesn't fluctuate when you have BPPV. You can stop it happening by keeping your head upright and very still, but once you're lying down with your head turned to the affected side you'll get an attack. When this happens, anyone observing your eyes will notice marked nystagmus - a circular movement of your eyes. The first stage of the Epley is to throw the patient down rapidly, head tilted backwards and turned to one side. This is done on both sides, to find out which side is affected. If your doctor didn't see any eye movement, you didn't have BPPV. Not in my book anyway. If untreated it fades over time, but it doesn't come and go.

      VN usually follows a viral respiratory tract infection, but I believe it can come on out of nowhere - possibly because you had the virus but it didn't produce respiratory symptoms. VN normally clears up over time, but if it doesn't I think you should see a neurotologist, to get a proper diagnosis.

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    • Posted

      I haven’t had vertigo/spinning  since this happened in September. Ever since I’ve had residual dizziness ( lightheaded, feeling kind of off, heavy head) but no spinning or anything. I meant to ask you with the BPPV if you get residual dizziness (not spinning) after the vertigo that lasts for months. 

      I feel fine for days and then I’ll have a bad week or so. In the days I feel fine I usually get tired towards the end of the day and I just sleep it off. 

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    • Posted

      I used to get that. Feel fine for months then a episode of vertigo. Then dizzy for 3 months or so. Then be fine for months to a year. Then the menieres progressed to the point the good days got fewer. Now there's no good days.

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    • Posted

      Hi Sharon,

      I'm trying to remember back 25 years to the severe attack of BPPV that eventually resolved itself without treatment after a year or so. I think in that case the residual dizziness might have lasted for a bit after the vertigo wore off but I can't be sure.

      The two episodes last year were different, as one was very mild and the more severe attack was effectively treated by the Epley. I have to say your case sounds less and less like BPPV. However, from what you say it seems to be gradually resolving, whatever it is.

      I hope you soon start feeling better.

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    • Posted

      Thanks a lot. I sure hope so. I am doing everything I can to stay active and I do my vrt although I don’t think my therapist is going a good job at progressing them as she keeps adding exercises to the old ones and at one point I was doing around 25 exercises daily. Where I live we don’t have vrt specialists, she’s the only I found. Praying we all have lots of health as that is all that matters really! 
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  • Posted

    Most times your initial doc visits will give you a bppv diagnosis. Only after some time goes by and a ton of tests you get a real diagnosis. Hopefully it goes away and it is just bppv. If it stays it could be more. I was told mine was bppv. But after 12 years of it not completely going away, and getting way worse, I have been diagnosed with menieres.
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  • Posted

    If the doctor told you you had bppv, did he perform the Epley maneuver on you?
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    • Posted

      The second doctor I saw was around 2-3 weeks after the vertigo/spin episode. He did the epley but I hadn’t experienced any vertigo/spins since that initial episode so he couldn’t see any movement in my eyes. I went to the doctor at the time because I was feeling off and dizzy (no spinning though). He told me to do the brandt daroff (I think that’s what it’s called not sure though) When I went back for a follow up and I still had the heavy head and lightheaded feeling he told me it’s not BPPV but he didn’t know what was going on. He made me do an mri and ct scan and they both turned out clear thank god. 
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    • Posted

      Hi Sharon,

      Just wondering how you are doing now? I was told I had bbvp from my first visit to a physio therapist. I did the eply maneuver and the dizziness went away. However i still have an off balanced feeling and ear pressure.. it’s been 9 weeks. It makes it hard for me to go to stores or crowded places... my anxiety is crazy now. I have been doing exercises for 3 Weeks which have improved my symptoms a bit but it’s frustratinf to still feel this way. Just wanted to see if you’ve seen improvement.. need some hopesmile

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    • Posted

      Hi Jessica. I was improving at one point around the 3 month mark and was having more good days  than  bad days but around 5 months I regressed a lot, maybe because I wasn’t very diligent with my vrt exercises..... or my therapist wasn’t progressing them so I decomepensated. What exercises are you doing? Did you have vertigo when you first got the BPPV? Is the vertigo gone now? I feel the same... vertigo only happened that night when I woke up but I’m left with an off balance, lightheaded, swaying feeling kind of.... and it bothers me so much. Weekends I don’t feel it as much so I’m wondering at this point if it’s my anxiety that is causing my symptoms because the vertigo gave me so much anxiety when it happened and I’m also very stressed at work.  Let me know which exercises the doctor gave you. 
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    • Posted

      That’s exactly what I’m thinking.. it might be the anxiety. I started with bbvp.. but because I’m still feeling these feelings I’m getting a balance test done tomorrow to see if it’s VN.  If it’s not VN I feel like there is no other option.. no one has answers to why I’m feeling this way.. I’m always getting with time you will feel better. But than I read some posts and people have been feeling this way for years which scares me.

      I’m going Monday to my physical therapy so I will see wha he gives me but for the last month I have been doing the exercises my ENT gave me. It’s the cawthorne Cooksey ones. They worked really well.

      I just can’t get rid of the lightheadedness and pressure in my ears. How long has it been for u?

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  • Posted

    Hi Jessica and Sharon:  I see you posted about 3 to 4 months ago and I was wondering how you are both doing now.  I had BPPV as well diagnosed by my family doctor and a physio who did Epley maneuver and definitely I had BPPV on the right side only since I had the nystagmus in the eyes.  He did the Epley maneuver a second time a few days later just in case there were residual crystals not in the right place and the second Epley did not give me any vertigo whatsoever, so it was cured by the Epley.   I am now going into my 10th week with this issue and like you both, I don't have vertigo but I definitely have head dizziness or movement inside my head and it feels weird if I put my head backwards.  I can't look down to read for too long or look at my Ipad or phone without my eyes just aching and I have now also developed bad neck aches with pain up the back of my head as well.  My doctor feels that I may have tightened up all my head/neck muscles from holding my head awkwardly at the start of my vertigo to stop the dizziness plus for a couple of weeks I had to sleep on two pillows which put my neck at an awkward angle.  I'm still very nervous to lie my head down at night but I am back to one pillow and things have gradually improved but I still am not over it and I just want to feel normal again.  My doctor did send me for a CT scan which came back normal and I think she was hoping this would stop my anxiety (I have never had anxiety before until I developed this issue - I would literally shake at night scared to put my head down).  I am definitely better with the anxiety now but still feel nervous that the vertigo will come back.  I now also have constant ringing in my ears.  I had a hearing test and have mild hearing loss and audiologist recommended that I see an ENT doctor just to check for other inner ear problems like Meniere's and I am terrified of getting Meneire's disease.  Also, as a last note, I had a tooth infection about a month or so before the vertigo for which the dentist was hitting my tooth with an instrument (once I was over the toothache) to see if it was loose.  I also use an electric toothbrush and after reading above about vibrations, I think I may stop using it for a while to see if it makes a difference.  Thanks for any feedback, I am hoping you are both now over the BPPV and are feeling well. Thanks for the feedback.  

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    • Posted

      Hi Janet,

      My history has been much the same as yours: BPPV diagnosed and successfully treated with the Epley manoeuvre by a physio, followed by various problems.

      I had very severe headaches going from my neck up the back of my head for a month or more after the Epley, which I put down to having held my neck rigid for the two months when I had the BPPV. I see your doctor has suggested the same thing. These went off after I started gentle exercises to get my neck back to normal.

      However, I have to admit I've suffered from low-level, non-specific feelings of dizziness and instability ever since, especially when bending my head backwards, just like you. This doesn't cause nystagmus or a spinning or falling sensation, so clearly isn't residual BPPV, but it is a bit disconcerting. The BPPV was fixed 16 months ago, and I've had this slight dizziness ever since.

      I haven't tried to get any treatment for it, but have just learned to work around it. I don't feel I'm at risk of falling over when I bend my head back - which I certainly was when I had the BPPV - but it's quite inconvenient as I have to put in eyedrops every hour for a serious eye condition. (The eye condition is quite unrelated to the dizziness btw.)

      I hope you can manage to come to terms with it too. 

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    • Posted

      Hi Lily, thanks for replying.  Wow, 16 months later and you are still having some issues.  It is amazing how BPPV can really mess up your head.  It seems to have affected my eyes or my eyes have just not got used to my new normal.  I am going to go to a physio about my neck issues and I will let you know if that works for me.  I think I have a bit of anxiety as well especially at night when I go to lay down.   I am very nervous about getting vertigo again and wish I could just stop thinking about it.  thanks again for replying and letting me know how you made out.  
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