VN or BPPV recovery stories needed

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.

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.