BPPV in SoCal

[Normison]

I am a 57 year old male who's just been diagnosed with Benign Paroxysmal Positional Vertigo (sp?).  After waking up a week ago with the room spinning and severe nausea, I spent all day in the ER.  Numerous tests were run to eliminate the major illnesses, and I ended up with this diagnosis.  I was sent home with a lot of Antivert (which REALLY knocks me out), and Brandt-Daroff exercises.  These flip-flopping maneuvers bring on the dizziness in a huge way, and I do them 3x/day.  I'm being as compliant as I can with these, but it's truly the most uncomfortable package of symptoms I've experienced to date.  I teach piano lessons out of my home studio fulltime, and am just barely able to make it through each session, feeling all the while very light-headed, dizzy, and nauseated...like it's a very windy day, non-stop!  I can find the positions, specifically, that make it worse, namely, my right side, and going from a sitting to a lying down position on my back.  I'm getting a referral to an ENT on Monday.  Has anyone experienced this?  REALLY need some company here!  Thank you, Norm

[Cyndi248]

After a week in the hospital where I was finally told I had SPRUE, an intolerance (sp?) to wheat and milk products! Since I had taken an odd fall, landing splat on my face a little over two weeks prior,  I had asked to have my ENT consulted, a request that was denied.  So, as soon as I got home, I made an appointment to see him.  I had hardly finished telling him about my fall when he  positioned me on a rather different table, and performed the Epley maneuver and sent me home with  a sheet of paper with instructions to lay at a 45 degree angle for 48 hours, etc., etc.,.  I still experience some nausea.  Now after a two hour search on the net I found your messages which sadley, a smile comes to my face because now I know I'm not alone.  Hang in there.

Cyndi

[Nancy T]

Hi Norm. The problems you describe in stores and other busy visual environments are pretty much universal in people with inner-ear problems, I think. That problem should get better over time. I have very little or no trouble with visual "busy-ness" anymore (unless it's a longer period of watching something in constant motion), whereas previously I could hardly look at traffic and felt uncomfortable for at least the first few minutes in a store.

The key is to stay active (thus provoking your symptoms to a SMALL degree--to push the compensation process forward) and to just focus on what you're doing (as you've discovered) rather than asking yourself whether you're dizzy. Focus your attention outward instead of inward, and you feel much better.

So many people on the "dizziness list" that I read for many years noticed that when something happened that absorbed their attention completely, such as a family member's crisis trip to the ER or some very pleasurable time or event, they didn't even notice being dizzy. That's the way it works. With the low-level residual dizziness, you won't notice it when your brain is otherwise completely engaged, unless you do something really provocative of symptoms.

I never had problems flying even after my ear problems started. Doesn't bother me a bit. I think it really only bothers people who have trouble with pressure changes, such as those with hydrops or fistulas.

Have a great trip!

Nancy

[Normison]

That was a fantastic read, Nancy!  This describes my situation to the letter, I believe.  The compensation idea makes perfect sense.  I believe this explains why, even though the major spinning episodes seem to have backed off, I'm still in a blurry slog most of the time, where the slightest quick movement jostles me into the dizzy zone. I've noticed, the more stimuli I'm taking in (walking the isles at Lowe's, following the teletape on CNN, visiting in a crowd of people, etc.), the dizzier I get, clearly from my brain having to work overtime to keep up with everything.

Hence, I've discovered various activities to be "therapeutic."  First, sleeping (!).  Second, believe it or not, driving.  Yep, the focusing, concentration, and fixed position are fine.  Third, reading.  No motion, again a fixed position.  Third, gardening.  That's right.  Up close, NOT busy, very relaxing.  And, finally, walking.  Just the opposite of going into the super market (awful!).  

So, rather than analyzing all I don't have and can't do during this time, I'm doing my best to be thankful for the grace I DO have at any given moment.  Makes a big difference.  Will have to design lots of non-busy time with my kids and grandaughter this weekend.

Thought I'd pass this on to you...only a minor bit concerned about the plane ride to Seattle.  Hope I can sleep through the whole thing!

Thanks, again, for the article,
Norm

[Nancy T]

Hey Norm, glad to hear your ENT tamed the BPPV beast! Let's hope it stays away this time.

The balance system consists of three elements, each of which provides sensory input, which the brain then integrates: (1) the inner ear, (2) vision, and (3) proprioception (the sense of where your body is in space, relayed by proprioceptors--touch sensors--in places such as the soles of your feet, but also relayed by spinal reflexes (I think?), "seat of the pants," etc.).

This is why people with impaired inner ear function come to rely (unconsciously) on vision and touch (such as steadying themselves by holding on to something) for balance clues. Your brain comes to rely on those signals rather than faulty signals from the damaged inner ear.

When the ear problem is stabilized, a process called compensation occurs, by which the brain finds "ways around" the damage, i.e., it rewires itself to compensate for the damage, just as happens in a stroke or other brain injury. Here is a good, expert article on how compensation occurs, written by a vestibular scientist--although it is more about injuries such as vestibular neuritis (inflammation of the nerve) or Meniere's attacks (I never really had the impression that BPPV was considered a vestibular injury--just a temporary out-of-whack condition):

http://www.dizzytimes.com/other-dizzy-conditions/2958-compensation.html

Have fun in Seattle, and stay well!
Nancy

[Normison]

After two aggressive Epley sessions with my ENT, my vertigo is now gone, just left with some residual dizziness.  I'm SO thankful!  It was his opinion that the reason it reaccurred was that it wasn't thoroughly taken care of the first time around.  He's confident I'm now fine.  

He said that the reason there is an "off balance" feeling that follows for a season, is that the brain literally does not trust the inner ear, and relys solely on the eyesight for navigation, as a result of the canalith or crystal "falling-out."  So, it takes time for the brain to relearn and reconnect.  Not sure I comprehend this 100%, but it's interesting.

So, I'm off to see my boys in Seattle, he said a plane flight is fine.  If I have another incident, we'll treat it the same.  Of the hundreds of patients this guy has seen for BPPV in his years of practice, he has not referred ONE for surgery.  Amazing.

Anyways, thought I'd bring you up to date, Nancy, you're such a good listener!

Norm

[Nancy T]

Darn, that's disappointing. I don't know much about it, but I do know that BPPV can occur in different canals and there are different maneuvers for different canals.

Glad you have a doctor familiar with this. The PT I saw did the vibration thing on me, although I didn't have BPPV at the time--I was seeing her for general dizziness and she did the Epley just in case, because I DID have a few BPPV episodes in the past.

If the maneuvers do not work, there is a canal-plugging surgery that might. There may be other treatments that I don't know about, too.

Dr. Epley has his Omniax chair which is soon to be marketed--although I don't know whether the chair has any benefit over maneuvers other than for people who can't have the maneuvers due to certain physical problems.

That IS the unfortunate thing about BPPV... it can recur. Sorry that yours came back so quick! Sometimes inner-ear problems resolve completely and permanently, and sometimes they don't.

Hopefully the ENT will check out any other possible ear problems that you might be having, as BPPV most commonly occurs on its own but often also occurs as a result of other inner-ear disease. However, I would think if you had something other than BPPV, you would have had more symptoms than you're having just with the BPPV attacks. Have you ever had an ENG? Formal hearing test? MRI? Those may not be necessary, but I would think they would want to make sure nothing else is going on. But again, I'm no expert... and diagnosing BPPV is usually very clear-cut.

Keep me posted and best of luck!

Nancy T.

[Normison]

After a week of BPPV-free joy, it hit me again with a vengeance.  That's right, same ear, same symptoms.  This time, I went to a qualified ENT, who did nearly an hour (off and on, with breaks in between) of Epley maneuvers.  He also ran a vibrating instrument behind my ear when in the laid back position.  It was amazing how much he knew of this.  He had treated three other patients that day alone with the same thing. He was not able to resolve the spinning, and also said that I now have some residual in my posterior canal, which has resulted in a balance problem, which I didn't have before, VERY debilitating!

Anyways, he's determined to resolve this and continue to work with me until it's all gone.  I'm scheduled to meet with him on Tuesday for another round.  Until then, NO going to the spin zones, and sleeping sitting up every night (now THAT's a challenge!).

Thought you might want to know.  I'll keep you posted,
Norm

[Nancy T]

Hooray!! I'm glad to hear your problem has been resolved! PTs are indeed fantastic. Your "waving" sensation will probably disappear over time.

It's fortunate that BPPV is such a treatable condition (most causes of dizziness are much less tractable). And unfortunate that so many people, including many doctors, don't know HOW treatable it is. You got to the right place.

Best of luck in the future!

Nancy T.

[Normison]

My P.T. is a genius.  After performing the Epley Maneuver, I followed up for a week with the home exercises, and all traces of spinning backed off, and have not come back.  I now sleep in all positions, thankfully, and I'm completely off the nausea medications.  I thank God for leading me away from the medical field in this instance and to a person who was not only trained in the whole Epley thinking, but interacted with me during the process, and throughout the week to follow.  Today, I'm left only with a slight "waving" sensation, like it's a windy day, but that's it.  She says this is normal.

She has recommended I hold off swimming and surfing for another week, which I am gladly doing.  In the case that the vertigo does return, I'll know exactly what routine to proceed with.  She's confident that this is how a qualified ENT would have treated me, who I would have gone to if this hadn't resolved the problem.

She mentioned that the three major known causes of BPPV are head trauma, former illness involving the vestibular region (I had Guillain Barre Syndrome in 2000, which DID involve my balance and proprioception hugely), and dehydration.  I'm not a real water drinker, more a "sipper."  Now I'm guzzling more water than I can keep track of!

Thanks, Nancy, for your listening ear and advice/feedback.  I appreciate your generosity, and how you lend such wisdom to us hurting folks on this forum.  Bless you!

Norm

[Nancy T]

Hey Norm, it sounds like you've got a great plan. I hope the PT resolves your symptoms (although be aware that BPPV can and often does recur--but at least if it does, you'll know what to do about it!).

Glad you found a knowledgeable PT. I haven't heard the part about "membranes" forming around the crystals, but then my knowledge is pretty superficial. The post-Epley precautions (such as sleeping upright, no bending) are, I THINK, becoming less common; I'm not sure what the studies/experiences show about following those, but certainly I would do whatever your own PT recommends.

I don't know if your PT is a vestibular PT (with extra training such as the weekend [?] Herdman course--which is considered tops, but certainly not the only good training course, there are many of them--and one who sees mostly vestibular patients) but even if not, since she's been trained specifically in the Epley, then she obviously is going to be able to help you. PTs are great, and yes, the one I saw also took a long time talking to me about my symptoms and trying this and that.

I don't know if Dr. Epley has ever had BPPV himself, but I've met him two or three times (going with a friend to her appointments) and I can tell you he seems to be a very gentle and kind man! Personally, I always sleep half-sitting-up, as it's just more comfortable for me, less dizzying, and keeps my nose unstuffed! But I can understand it would be uncomfortable for someone not used to it.

Let me know how you get along and whether the BPPV goes away. Best of luck!

Nancy T.

[Normison]

Due to the fact that it takes forever sometimes to finally get a referral to a specialist via my GP, I chose yesterday to visit my physical therapist, who is trained in Epley manerver, to let her have at it with me.  She scheduled a full hour (how many doctors would do this?) to discuss my symptoms and explain precisely how she would deal with them.  She took me through a round of Epley, first on back with pillow underneath my neck (as opposed to the neck being entirely off the table), then rotating 45 degrees first to the right then to the left (really bringing on the nystagmus, etc.), then, finally, slowly to an upright sitting position.  After that, I sat at a 45 degree incline for 10 minutes while she "debriefed" me as to what she had just accomplished, and in detail went over at-home follow-up instructions.  

Last night I slept in an essentially upright (45 degree) position (grueling!  I was wondering, "Has Epley ever slept a night like this?) and still (no flip-flopping, no bringing on the dizziness).  The purpose being, now that the crystals were back into their respected locations, for a few days of relative stillness to allow the membranes to form around these crystals so as to KEEP them in their place.  For the next 2 days, I will essentially refrain from positions that bring on the vertigo, again allowing everything to seat.  On Saturday, I start the at home Epley's, twice a day.  In a couple of weeks, I'll then go see her and she'll take me to the places where the dizziness was triggered in the past, hopefully to be resolved.

Wouldn't you know, yesterday afternoon, my GP called and said he had gotten a referral to an ENT for me, a specialist in vertigo.  This referral is good for 90 days.  I thought I'd continue with my PT for the duration of the Epley and, if there is still persisting vertigo, I'd then use my referral to go and have further assessment and testing done, if necessary.

Anyways, thanks for listening, any feedback is appreciated!
Norm

[Nancy T]

Yes, as I posted on the other thread, I THINK if you get dizzy when lying on the right side, it would be your right ear that's the problem.

There are variations of BPPV depending on which semicircular canal the debris is in. Also the debris can get "hung up" on the cupula. These cases might require special maneuvers other than the plain Epley. I don't know the details of these (I am just a layperson), but if you're seeing a dizziness MD, that person should know these maneuvers (or another solution to the problem), or should be able to refer you to a vestibular physical therapist who does. The vestibular PTs are actually the ones who probably have the most training and experience in doing the maneuvers, I believe, but in any case if you're seeing a dizziness specialist-MD, you are definitely on the right track to a correct diagnosis, which will lead to the correct treatment.

Good luck and keep us posted!

Nancy T.

[Normison]

Thanks for your input, Nancy T.  I just returned from my general physician, who admitted he didn't know how to administer the Epley, and is now referring me to someone who does in my area.  I'm still spinning wildly, and the Brandt doesn't seem to be doing the trick this time around.  BTW, is there a way to tell which ear is the affected one?  If I can't sleep on my right side, or go back into a neck back position, does this mean it's my right ear?  Also, when I flop to my right side, THAT'S when I experience the out of control spinning during the Brandt exercises.

Thanks, again, for your interest and concern,
Norm

[Nancy T]

Sounds like BPPV all right. Antivert won't really help it, I don't think, and the Brandt-Daroff exercises may help over time but are a POOR substitute for the Epley manuever.

Many doctors either don't know about the Epley manuever or don't WANT to learn/do it because of ego or whatever. Dr. Epley was laughed at and it took him a long time to get his theory accepted. But his manuever is now THE standard treatment for it.

See this site, by the highly respected dizziness specialist Tim Hain (a neurologist):

http://www.dizziness-and-balance.com/disorders/bppv/bppv.html

See Dr. Epley's Ear Info site:

http://www.earinfosite.org/

For the story about Dr. Epley's hard road to acceptance, go to oregonlive.com and search on "epley"; it's not working right now but I think the story is still posted (it came out on Dec. 31, 2006, I believe).

Nancy T.