New dx - severe horizontal BPPV - so confused

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Hey all,

Does anyone have any information on horizontal BPPV?

I saw a physical therapist today and he did a bunch of maneuvers and saw that I have a horizontal nystagmus that goes toward my bad ear (left). It was doing 9 beats per 22 seconds.

I was dx with atypical Menieres after having testing done in June (at a top dizzy center) but they said I didn't have a nystagmus. However, I could literally feel my eye doing the nystagmus today. I've felt it before but just always thought I had jumpy vision. He even videoed it.

I've had 3 brain MRIs (1.5 tesla) within the last 4 months (1 with contrast) so I don't have any tumors or lesions (that I know of).

I'm just so confused! I've never had vertigo attacks (hot flash, spinning, ringing) until this year but Ive had vertigo for 11 years. And now I have a nystagmus and he's saying it's severe horizontal BPPV and I just don't know what to believe.

I'm very overwhelmed by all of this.

Any thoughts from anyone please?

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  • Posted

    From what i understand from Dr. Nystagmus only shows up when you are having acute problems. That's the way it is for me. Nystagmus confirms bbpv.

    I only have nystagmus sometimes. You describe vertigo 2 different ways. I dont understand how you have had vertigo for all those years without an crazy attack? There is dizzy and then extreme vertigo where I can't walk. I am not sure but I wouldn't describe them both as vertigo. People and Dr don't understand unless you specifically describe it. Lots of people say vertigo and they mean little dizzy lightheadedness. If you are having extreme vertigo then you need be explain to your friends dr family so they truly understand what you are going through.

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  • Posted

    Explain it simple. Bbpv are crystals that fall out of place in your inner ear. You need to have the physio do a little adjustment to put the crystals back in place. You can't bend over or look down and need to sleep in a recliner or upright for few days so they settle. Some therapists are good and some not. You should feel fine after if they do it right - Just tired. Don't let them put glasses on your eyes when doing it cause it ruins it for me. If you really have bbpv then that will cure the worst part. Great prescription for me is SERC.

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    • Posted

      I have both dizzy and vertigo. That means I have vertigo attacks but dizziness inbetween. If by "crazy attack" you mean spinning & etc., I have. However, I've never had that rush of lightheadedness, hot and sweaty, ringing in ears, and everything starts spinning like Ménière's until this year. My 11 year vertigo "attacks" would only consist of waking up with vertigo in the morning that would last all day; feeling the vertigo come on over a period of days before it worsened; and having it for weeks and months at a time. Not acute attacks out of nowhere during the day like the Ménière's ones I started having this year. That's why I was dx with atypical Ménière's disease finally after so long.

      But now my crystals, according to my physical therapist (aka physio), are in the lateral canal. I've felt very tired all day so that might explain some of that. I have to go back once a week for 3-4 weeks and do it again. He said my case is severe and shame on them for never noticing.

      I'm just confused as I don't know what to believe. Will BPPV cause acute attacks with the hot and sweaty like I've been having this year?

      He says he can cure me but I'm trying not to get my hopes up as I've heard "cured" for years from different doctors.

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    • Posted

      I get the same and I think so . I have over the years been dx with viral, infectious labyrinthitis, ear/sinus infection that when I take an antibiotic it goes away. bbpv definite dx. Confirmed and ? Menierres. Alot of those from same dr. Lol. They conclude if the procedure doesnt produce dizziness then something else. I get your exact symptoms but 1 time procedure should work. Did he tell you after procedure no bending over and to sleep upright for few days to let the crystals settle. Some dr not good at doing it so try another dr. If it didn't work first time then he prob didn't do right or you were not told to keep your head up and straight or its an infection - try wearing a neck collar and sleep sitting up on your couch with pillows on both sides of your head after the procedure and get prescription SERC. Next step if that doesn't work - get an antibiotic for possible sinus/ ear infection. Also, try cold and sinus drug. This year had been crazy for me - i have had hot head before but like you is the first time my face and head is just reallt burning up and gets all sweaty feeling. Lol - i never sweat either and the rest of me is cold. I totally understand your frustration! For me unfortunately my family dr died so I can't follow all my own suggestions because the clinic says to wait for specialist appt . Otherwise all these steps ultimately fix me. I really hope all gets better for you!

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    • Posted

      Thank you! He said I could lay down just not on my left ear which is the one that's messed up. And he said I can't bend over so I haven't been bending to pick anything up. I've only laid on my right side but I go back Wednesday and I'm gonna ask him if he thinks I should stay up straight. I read before to wear a neck brace so maybe I'll try that.

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    • Posted

      Hi, I have BPPV in my left ear, so when I roll to the left I feel the room is spinning inside my head, but I also have MAV (silent migraines) where I lost my balance and could barely walk.  The consultant told me that I have 2 conditions going on and not to get them confused, which is the best advice I was given as I thought it was all the one condition.  I find the crystals tend to dissolve of themselves after a few weeks of BPPV as can't always keep going for Epley manouvre everytime it occurs, which appears to be every couple of months or so.

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    • Posted

      Oh geez I never thought of having more than 1 dx. - when the epley manuvere didn't work they just thought it might be menierres. I started going for tests but dropped out since the 1st one was negative and the dizzy clinic seemed more like an experiment - the dr came up to me and without warning took my head and shook it violently from side to side - made me sick and left me like that. I had to go back to the ENT to do the epley. But when I go to specialist and it's not the crystals then they just say they can't help. How did you get dx with silent migraines cause I have extreme headaches sometimes where I can't move my head. What do you do for them? I have been having so many headaches lately with neck and ear pain too. Actually, that's how this current episode started - I woke up in the middle of the night with extreme pain in my neck then head then I went to get up and the crazy dizziness started. Does this sound like your silent migraines?

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    • Posted

      Geez Anne - I looked it up and I think my problem are also migraines besides the BBPV but with the headache Part. I think myself and the Dr's are sidetracked cause of the dizziness. I will see at my specialist appt. What the dr. Suggests. What do you do to help yourself? Any suggestions? Thanks for your help! 😆

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    • Posted

      I know, it was a revelation to me that I had 2 issues running alongside each other.  I thought it was all one.  It took 2 years for me to see the consultant who finally told me, I had been seeing another consultant who confirmed I had BPPV and MAV but I wasn't listening properly I guess at the time, becasue my problems were at their worst at that time and I could barely walk in a straight line, my vision was all over the place and I felt spaced out, that was the MAV.  When I rolled over in bed I felt the room spinning inside my head head and it wasn't until the second consultant spelled it out to me, you have 2 conditions going on, don't get them mixed up.  I still wasn't convinced but the tablets he gave me resolved 80% of my MAV but I still have bouts of BPPV.  I saw a neuro otologist who put me on low dose Nortriptyline and have really improved over the past year.  With silent migraines I was getting all the symptoms of a migraine, blurred vision, balance problems etc., without the headache, I would get a pounding in my ears and neck pain.  The nortriptyline have resolved all this.  It is a neuropathic pain relief but use to be used in higher doses as a tricyclic antidepressant.  I am concerned about coming off it as worried all the symptoms will return, but consultant reckons my brain may have healed by now from the cluster migraines I wasn't aware I was experiencing.  Hope this helps.  All best wishes. 

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    • Posted

      Also I try to avoid chocolate and cheese as these were triggers for my silent migraines, at the time when I was at my worst, unaware, I was eating a lot of chocolate and cheese.  I have been told by the consultant I can gradually increase these into my diet.  I notice now if I overdo it, I have balance problems but to a much lesser degree.  ALso supermarkets were a problems with all the shelves and lighting and turning down ailes.  Now I can do it without too much problem.

      I became determined not to let anxiety not make it all the worse. Breathe deeply and walk confidently and walk myself through it.

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