Long Term Dizziness after BPPV

[cpyles]

I have experienced chronic dizziness for 2 years after having BPPV. The severity varies from day-to-day, but on bad days I feel lightheaded, easily get dizzy, will have mild visual disturbances [e.g. when staring a striped object I will see the stripes vibrate], and am very senstive to rapid head movements particularly in the dark. I am posting in hopes that someone else may have had a similar experiences and can share their diagnoses or successes.

History
37yoM.  Two yrs ago I had sudden attack of BPPV. After 6 weeks untreated it was diagnosed as both posterior and horizontal canal bppv and sucessfully treated at UCSF. Post treatment I have not had any nystagmus or "spinning attacks"

Post treament I was given vestibular rehab exercises which i did religiously for 45 min/ day for 6 mos. This helped but did not stop the symptoms.  I added daily Yoga and got significant relief but still no resolution

In the past yr I've seen two oto-neurologists.  Who were both stumped. MRI and MRA were normal.  One suspected some residual loose otoliths and prescribed epleys for two weeks. This didn't help. The second suspected migraine associated vertigo, since I usually have headaches that come w/dizzy attacks [though I think these are CAUSED by the dizziness].He put me on nortryptiline 25mg/day. After about 1month I did seem to improve, but after few weeks the same symptoms returned.  I am now upping the dose to see if that helps but I feel that I am barking up the wrong tree and the migraine assocation might be a red herring

Appreciate hearing from others

[hanabppv]

Hi,
I have been experiencing the dizziness after BPPV and found some visual disturbances e.g when looking at stripped and structured patterns and difference in size of eye pupils in dim light. has anybody experienced this difference? Please share with us if you have found any solutions?

[Stacy0624]

Has anyone experienced issues with sleeping from having BVVP for a while? I sleep on my back at 45 degrees but when I try to sleep it feels like my brain is fighting dizziness... I get worken up by this several times during the night.

[MomtoBlake]

I too have been struggling with dizziness and vertigo. I have read through every post and have seen head injuries or neck pain as a common theme. I'm currently seeing a NUCCA Specialist who had found a C1 & C2 (top 2 Vertebrae in our spines) subluxation/misalignment. When this occurs, it brings on a laundry list of symptoms and illnesses as thr nerve pathways to and from the brain are interfered with. The C1 & C2 are donut shaped in that they have a hole in the center where our spinal cord travels. If these bones are displaced or out of alignment, it can cause issues anywhere in our body. Think of it like a kinked hose. I am 2 months in to treatment and am a lot better in a lot of ways. He thinks my subluxation has existed since I was a child. Possibly since birth. I was a large baby of the late 70s where forceps were used. I've also had some head bumps and whiplash injuries over the years. After my xrays, my doctor said that my misalignment was in the top 3 worst he's ever seen. Often times they review the xrays and measure for thr slightest of misalignment. Mine was severe enough, he could see it just at quick Glace of the xray. And when he showed me mine next to a healthy spine, I couldn't believe the difference. FINALLY....someone knows what's wrong with me! Read up on NUCCA or Upper Cervical Subluxation and see if you have any of the many symptoms that this could cause. If you do, find a NUCCA Dr (regular chiropractors aren't trained in this...it must be a NUCCA Specialist) I had symptoms that I never would have related to being connected. Jaw clicking, deviated septum, chronic sinus issues, pain in left hip, digestive issues, lower back pain, the list goes on.

[jolynn56]

I can sympathize with you all. I have been suffering from BPPV since 1991 after diving for pennies in the pool with my son at a BBQ. The next morning I jumped out of bed to go to the bathroom and was thrown violently to the floor. I tried to get up several times with the same result. I couldn't lift my head and had to crawl to the bathroom. I really thought I had a brain tumor or something equally as frightening. We were on vacation and I spent the rest of it curled in a fetal position. It was the only way to stop the spinning. The symptoms subsided but hadn't gone away after a month so I went to my doctor back home and he told me that it was an inner ear infection that would come and go for the rest of my life but that each new episode should be less severe. It seemed he was right and for years it went away completely. In 1998 I was diagnosed with stage 3 cancer and underwent chemo and radiation and so I had all but forgotten the vertigo because of this new disease. That was until the vertigo came back with a vengeance. I had finally had enough when after 6 months the symptoms had not subsided. My PC doctor referred me to an ENT doctor. I swear to you this doctor came into the room, introduced himself, looked in both ears. Told me I had fluid in both ears and with no further tests told me I had developed a salt sensitivity. Wrote a prescription for a harsh heart medicine told me to take it for three days and if the symptoms got better stop taking it. If not better go five days but try not to take it any longer since I didn't have the heart condition that the drug was usually used for. I tried to ask him how he could be sure that it was a salt sensitivity without further testing and why I developed it and he turned at the door and said "just dumb luck" and out the door he went. That office visit took about three minutes. Needless to say the meds didn't work and I never went back to that idiot. Fortunately for me my doctor at the cancer clinic was able to help. I was over 5 years out with no signs of cancer and she said you must be so happy and I burst into tears and told her I would be if vertigo was ruining my life. She immediately got on the phone and spoke to the specialists at LSU and got me an appointment at their ENT clinic. She also prescribed valium because they said it helps calm the inner ear and help with the anxiety that goes along with the BPPV. At my appointment they did the Epley maneuver and put me in a neck brace. They told me to stay in an upright position for 72 hours and no bending over during that time and miracle of miracles it worked. I was totally symptom free for at least 2 years but sadly the vertigo has come back and the Epley hasn't worked on the latest bout. I guess all I can say to you is never let a doctor tell you it's all in your head or put you on some medication that isn't used specifically for vertigo. Keep trying to find a specialist who deals with vertigo, because it is apparent that most family doctors are clueless when it comes to BPPV.  Also if you have the Epley, wear the neck brace (it just reminds you not to tilt your head) and don't lay down past a 45 degree angle for the whole 72 hours. Some doctors and pt's don't tell you to do it but when I did it, it worked. I went to a pt and not LSU hospital clinic this last time and they said 48 hours and like I said it hasn't worked yet.  It's hard to but when you think of the alternative of having symptoms for months it is well  worth the effort if it works. There is a new chair called the Epley Omniax that I saw on The Doctors. It is on YouTube so you can look it up. There are only six in use in the U.S. maybe more since that episode. Cities I know of are St. Louis, Chicago, L.A. Las Vegas and in the Tampa Bay area. If any of you live in any of those cities I would start there and forgo all the misery of repeat visits and endless referrals. I wish you all the best.  

[lll4242]

I have suffered with vertigo for over 15 years.   First brought on by an ear infection.  First ENT doctor did very little for me except prescribe prednisone, which did not help and my first attack lasted almost 6 months.  Then about 10 months after taking the prednisone, I suddenly went blind in my left eye.  Doctor said it was caused by the prednisone and I had to have both of the lenses in my eyes replaced with interocular implants.  The first place that finally helped me was a balance center about 6 years after my first attack and I was finally diagnosed with BPPV and treated for that.  The problem is the vertigo always comes back and I have resigned myself to the fact that this is how I'm always going to be.  After the repositioning techniques stop the violent spinning, I'm always faced with the residual after effects that are also bad.  Have trouble reading or looking at a computer screen because of flickering effect with my eyes.  I can also sometimes tell when an attack is coming because the base of my head at my neck starts to feel woozy.  It always comes on after laying down to sleep.  Sometimes I have trouble in a store because it is like there is too much visual stimulation and my brain feels like it has to lock onto every item and process it instead of just walking by things.  I always have to leave the store within 5 minutes cannot tolerate any longer.  When it's really bad, I can read words but can't tell you what it means.  I feel the need to touch things to keep my balance and also look downward at my feet to keep from walking like a drunk person.  These two habits are not good and do hurt recovery.  The worst part is trying to retrain my brain to listen to my inner ears again after violent spinning has been stopped.  It feels like one side of my brain is fighting the other side and is very uncomfortable.  It is also and extremely exhausting illness.  I have to do so many things to compensate for the balance problems.  It is extremely depressing especially because I live alone and there is no one to help me with daily tasks when I'm bad.  I fall a lot and a couple of years ago during a vertigo attack, I was trying to walk through a doorway and hit the frame which propelled me backwards and I hit the short post of my bedframe knocking me out.  I had a concussion and had to have stapled put in my head.  These vertigo episodes have so dramatically effected my life it's horrible.  A lot of people question and think that I am faking an illness to get out of work, which is so not true.  People think your just dizzy and that is so not what it is.  I've had so many people call me because they got vertigo from something and say, "Im so sorry I didn't understand how bad this is for you and don't know how you've done this for so long"  Just wanted to share my experiences so it may help someone else

[LaceyK61]

You're just like me and I sympathize.  It's miserable and depressing. I fear leaving my bed, let alone the house. If I do leave the house, I sedate myself as much as possible with Diazepam, which reduces the anxiety of being so off balance. Forget walking in the dark or in open spaces. I have had vestibular therapy about a year ago and it seemed to help some but I was only able to do 3 treatments before leaving the state.  I am now waiting on my referral here in CA to see another therapist.  The thought of having to go through those horrible induced vertigo spells makes me cry just thinking about it.  You literally feel like you are going to die from the panic associated with it. I have been going through this since the 80's, although it didn't become chronic until 2006. Up until then I was functional...I could drive and work and then boom, I found myself not being able to leave the house because of the fear of getting dizzy and going into panic. Anyway, I didn't know what was going on until I saw a doctor in 2010 who diagnosed me right away with BPPV. It was on my first visit to him for a physical and he asked me to tilt my head back so he could look up my nose and I said, "no way".  That led to questions which then led to him doing a test in his office (which terrified me) and sure enough he determined it was my right ear.   Last year I saw a very good Neurologist who ruled out everything but BPPV. I did the MRI thing, with and without contrast.  That was a relief but this horrible imbalance is really getting me down.  I'm afraid to shower because I can't stand up straight and often end up sitting on the shower floor.  I have so many symptoms  Walking off to the right, constantly.  Looking down with my eyes (like doing dishes or cooking), is miserable and I have to hang on to the wall or counter.  The energy I expend just trying to be "straight" is exhausting.  Any kind of exercise is out and all I do is sit on my bed, afraid to move.  Most of the time it's ME that's moving in my head and not so much my surroundings, although that does happen if I'm not careful what position my head is in.  I feel there is no hope.  I pray A LOT and am now in a place of just trusting the Lord to help me through this.  I'm sorry for going on and on but it's been pretty bad for me the past couple of days.  I sure hope you feel better soon.