Ear, Nose & Throat Community
Long Term Dizziness after BPPV
About This Community:

This patient support community is for discussions relating to ear, nose and throat issues, ear infections, nasal polyps, sore throats, and swollen glands.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Long Term Dizziness after BPPV

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
Related Discussions
27 Comments Post a Comment
Blank
Avatar_m_tn
My symptoms virtually duplicate your's.  Has all resolved since?  

Norm
Blank
Avatar_n_tn
I had a sudden attack of vertigo in February while lying in a tanning bed, I turned my head to the side and felt like I was being spun off the earth.  I ended up falling to the floor when I stood up suddenly (drop attack) and found the spiining stopped within a minute or so.  After a few more attacks and drop attacks (drop attacks always occurring when laying down and turning head to side) I finally got a diagnosis of BPPV.  Had an epley meneuver performed, it was terrifying the spinning was so severe but it worked in that I have not had a violent episode of vertigo since.  However, I now find it extremely difficult to function because I am so off balanced.  I can't seem to walk a straight line, often feel as if I am going to faint while walking, have vision disturbances, again mostly when walking, standing still is also a problem, need to hold onto something.  Find it difficult it sit in a high chair, barstools etc., have to have my feet on the floor.  I am getting to the point where I have greatly reduced my activities.  I dread the grocery store, parties even going to the beach because the walk to and from the car is often difficult.  Most of the time my head feels large and congested and I often experience facial numbness.  I feel extremely weak, my legs feel weak and shaky, I am tired all the time.

The anxiety all of this has caused is unbelievable!!  and now I find I am starting to get depressed because my activities are so limited.  

Please share your stories and let me know if you found help for this.
Blank
Avatar_n_tn
Similar situation here, but I am in my 50's.  Last week, I had 6 progressively more intense BPPV events (room-spinning, nausea, dry mouth, dilated pupils, cold sweats) over a 6-hour period, unnerving to say the least.  I was taken  to a doctor who immediately diagnosed this as BPPV (no other symptoms, all other things okay) and prescribed an OTC medication (Bonine aka meclizine), which reduces the dizziness, but does not really treat the cause of BPPV.  I was waking up, turning my head to one side, when the first event cycle occurred.  I used the medication for 2 1/2 days and did limited Epley maneuver exercises a handful of times over next five days.  I have not had a repeat of room-spinning event, but after 5 days I still have occasional unsteadiness, somewhat dilated pupils (sun sensitivity), and front of head type of low-level, but constant, headache and worse than usual tinnutis.  Are these just slow to abate side effects of the initial BPPV?
Blank
Avatar_n_tn
I have dealt with BPPV for almost 4 years.  I am still getting attacks every 4 months or so and now have residual dizziness that has lasted for almost a week.  Epley was done in the beginning and I have not gone back for more because it didn't seem effective.  Now I am wondering about going back for more treatment as I seem to be in a constant state of dizziness. Has anyone had complete resolution to this problem?
Blank
Avatar_n_tn
I have the same symptoms. My Primary "Kaiser" Dr. didn't do a blood test or ref to ENT, or Neurology.  He tried to lay me back on the table to replicate the dizziness to "fix" me.  The room did not spin at that moment for his test and ref'd me straight to Psyc.  I am very dissappointed and VERY frustrated. I am online to figure this out on my own.  I don't feel this is a Psycological issue.  Something has happened. I think I may have had BPPV, and has turned to these longer episodes since having H1N1. I have the vertigo, but also lightheadedness.  Sometimes turns to panic attack when I am somewhere alone with my very young children. Do you have an update on what has happened to you in the last year.  Please tell me something has made you better!!
Blank
Avatar_f_tn
Hi everyone. I've just been reading through all your stories as I feel I need some support with the same condition. I've had dizzy attacks for about 3-4 years now and nothings been done. My doc always says it's viral. I've never had a hall pike manuveour done, but did once try the epley. Didn't help. I don't know what else to do, as at the moment I can't even move around my flat. I have a fear of doing anything at the moment & feel like I get on with normal life. Nearly passed out at work the other day. My family are sympathetic but don't understand, my doctor is giving me nothing? Is there anything you guys have tryed that has worked? I'm only 22, thanks
Blank
Avatar_m_tn
I had a car fall on my head back in '87 ... breaking the bones in the inner ears (as well as cracking my skull and breaking numerous facial bones)... I underwent 6 surgeries, had shunts in my ears, did 6 weeks of bed rest flat on my back (allowed up only 15 total minutes a day) and for the first two years after the accident couldn't walk 10 feet without hanging on to some one or I'd fall.
I was blessed enough to work with John Eppley ... the field of BPPV and its assorted jargons was very new back then ... and Eppley helped me keep my sanity by explaining what was happening and trying numerous things to help me. Eppley was patient ... and I guarantee I was not.
I stayed with him for nearly 11 years and went through every test known to man in that era.
Fast forward 22 years and I have to tell you I still get spells that leave me lying on the floor from falling (hydrops) and am constantly getting bruised from walking into doorways.
Why am I telling you this?
One of the greatest pieces of advise Eppley ever gave me came after I asked, "How long till this get better?"
He said, "There's no real way of knowing and what if it doesn't?"
Talk about scaring the tar out of someone ... "What if it doesn't?"
But I took that to heart and realized I really had no say in the matter ... if it got better (and I did everything I was asked to do) then "Yippee" ... but if it didn't I wasn't going to quit living.
I was back at the hospital last week because I took a couple serious (without warning) falls and decided maybe I'd had a stroke ... um, nope. Just my ears going crazy again ... worse than usual.
So what am I doing about it? Praising God that I'm not as bad as so many people I hear and read about.
I've learned a great many techniques for helping myself (and, if you have specific questions) I'd love to try to help you mentally ... which really is a giant portion of this injury.
JIm
Blank
Avatar_f_tn
Hi,
Just wondering if you have any update? I have had BPPV since a flight in May 2008, it initially lasted for 2 months & then went away with a few random attacks - in the last 9 weeks I have been dizzy nearly everyday, have epley done weekly now but it only lasts for 2 days, saw ENT last week & he told me there was nothing he could do to help. Am depressed & worried about the future, this effects everything, especially my ability to work.
Would love to hear from anyone that can give me any advice - every medical person I speak to tells me they can't give me any answers. And the wait list to see a proper specialist is 6mths to 2 years.
I have been through long term illness before & it was never as hard as this.
Nik
Blank
Avatar_f_tn
I had my first episode about 1 month ago the first thing that happened was when I woke and opened my eyes the room looked like a strobe light was on -darkness than the room -darkness than the room very fast than the spinning.I have had the spinning 2 times now but not the strobe effect since and have not been able to find anyone else who has.My doctor thought it was some side effect of a medication that I had just started taking but then it happened again and I was told it was bppv. I am looking for some answers but all I am finding is some things work for some people and some for  others and just more questions.
Blank
Avatar_n_tn
hi
i dont know what to do any more
i feel dizzy since april, cant stand this any more
feel like i m drunk all the time, fell so angry and annoid.
doc just did 2 times my blood test all is fine
give me a inner eyer infection tablets ,taht helped for a fue days ann it all the same again, back to dizzinessss
any idia
thanx
Blank
Avatar_m_tn
so how are you dealing with this now? I am interested because what u are describing is how i feel too. I am not sure what i should do either..they told me i have meniere s disease but? please email me at ***@****
Blank
Avatar_m_tn
I have the same symptoms as you.  Have you found out anything that helps? I have had this since Feb 2012 and have had the Eply done three times and the dizzy and vertigo keeps coming back. I have good days and bad days but every day there is an episode of dizzy of some sort. I cannot sleep through the night as I turn over in my sleep and the vertigo wakes me up.  Have you heard of the Dizzy Fix cap?  I am thinking of buying one of those as it replicates the Eply maneuvers that you can do in your own home.
Blank
Avatar_f_tn
Hi, 10 days ago woke up with full on spinning after stretching out in bed. After 4 days of spinning, went to the docs who told me to do these manouvres to bring on the spinning. Spinning stopped, but now have constant dizziness and unsteadiness. Spent the last 4 days in hospital. I'm scared that this won't go away. I have 3 young kids and need to be able to drive. I'm sure that people around me think I'm going insane. My head has started to wobble and I can't look up or down. Please if anyone has had any resolve, please tell me how.
Blank
Avatar_n_tn
I feel the same way,Some days you are fine ,other days I am dizzy from the time I get up till bed,I am tired, fell like I can't bend over or make sudden turns, just feel bad all over .Doctor does not know what it is, I would like to know what started it.
Blank
Avatar_m_tn
I am 39 yrs M. In dec 2011 I started getting initial symptoms of BPPV where I felt slight spinning while looking up towards right side. After two weeks  while siiting at home I had a sudden intense attack when I felt like passing out and nauseated. I went to a nearby walk in clinic and he told its called Vertigo and he gave me 10 days medicine and said it would go away. He didnt specified it being BPPV. Since that day my actual BPPV started where I felt spinning while going to bed, or rolling over and getting up in morning. I didnt have any other symptoms for another two weeks. It was on internet that i found that the kind of vertigo I have is called BPPV and through internet i learned about epley. I performed it and the spinnig symtoms (symptoms) went away next day. I was happy that I am fine now. But after few days the symptoms of nausea came back. I had difficulty driving, ringing in ears, difficullty focussing specially moving objects, some kind of fullness in ears. My family doctor had not much knowledge about it and gave prescribed the same antidizzines medicine (beta histine) with higher dose. This didn't help at all. Then I went to ENT specialist. He checked and found no nystagmus and hearing test was normal. He said the symptoms may come and go and didnt provide any permanent solution. Now after 7-8 my symptoms are still there. There are some days when I feel like I am getting better and the symptoms will go away completely, but so far this has not happened as the same symptoms come and go in circular manner.My job involves lot of driving plus bending down. Few weeks back I felt little spinning while going to bed. With Epley it went away again. I am trying to getting used to these symptoms. I am still hoping  that I may totally get to normal one day.
Blank
Avatar_f_tn
Hi
Blank
Avatar_f_tn
Hi I am sitting here in Iceland with constand dizziness,lightheadness,blurred vision . I fell on my head in February when I slippen on ice. I had the spinning and my ENT doc did the Epley and the wild spinning got away when laying and turning in bed. Since then I have felt like I am all the time on the children merry go round . Like a slow spinning and unsteadyness all the time. Often bad when I am in the gym looking up or down. It is worse when I am surrounded by a lot of moving people or cars. Hard to focus on things.I have tried to not think about it but it is hard. I is good to read your stories to see that I am not alone.
:)
Blank
Avatar_m_tn
Please what can be done to terminate this dizziness once and for all, apparently no one has an answer. Please answer and help others. I had this condition shortly after head injury in dec.2011. I am suffering because it affects my work. I am just 18
Blank
Avatar_m_tn
Please what can be done to terminate this dizziness once and for all, apparently no one has an answer. Please answer and help others. I had this condition shortly after head injury in dec.2011. I am suffering because it affects my work. I am just 18
Blank
Avatar_m_tn
Hey be strong! I think many of us are going though similar issues... I think Dr's hesitate to diagnos BPPV. I really don't know why honestly, I also have Kaiser and am awaiting a second opinion. I may even seek an outside referral. Have any of you heard (pardon the unintended pun) of the House Clinic? If you haven't, Google  them, they are renound.
Blank
Avatar_m_tn
I am a Kaiser patient in NorCal and have been diagnosed with BPPV by ENT(head and neck surgery). I have had this for 11 years and historically my episodes eventually go away, but come back in full force about every 1.5-3 years. The current episode I am in has lasted 7 weeks with what I call residual dizziness, lightheaded, foggy headed feelings. My physical therapist and ENT state 3 mos is a normal course to rid of the residual, and I am counting the days for sure.

My question to you, was have you had any luck getting your Kaiser DR to refer you outside of Kaiser for additional opinions...the House Clinic that you mentioned for example?

Thanks Jen
Blank
Avatar_m_tn
44 yr old male. Had BPPV set in over a couple of days a month ago. I did the research and did the Hallpike-dix test on myself several times at home with consistent results positive for the right side. I did the Eply maneuver at home using a one minute pause between steps. It did not help. 24 hours later I did it again waiting two minute pauses between steps. This time the vertigo followed as I turned to the left and continued for about thirty seconds when I rose to a sitting position with chin down. It worked. A few hours later the symptoms were way better. I repeated the Hallpike-dix test the next morning with negative results for both sides. Yay!! it worked. But, here's the part which led me to this post. Since and now I feel light headed, not dizzy or vertigo but constantly lightheaded, feel a little "off" and sometimes head rushes when standing up. It doesn't seem to be getting better. Just thought I would share.  
Blank
Avatar_m_tn
I have had BPPV symptoms for the past 3 months and was doing the Epley exercise on my own. Today I saw a PT who did an evaluation to rule out other, more severe, conditions. As bad as I feel, it is amazing to think there are worse conditions, but BPPV doesn't result in permanent inner ear damage thankfully. The PT explained to me that there are three canals in the inner ear where the otoliths can travel. The exercises are different for the three canals. So, if you have otoliths in the horizontal canal, the Epley won't work. The PT used a mask (like a diving mask) to look at my eyes under different conditions. All I could see was black. The ENT I went to sent me to the PT for the evaluation. It appears I have posterior canal issues on the left and horizontal canal issues on the right. I was treated for the left side today with the Epley and next week, if the right side still shows horizontal canal issues, I'll get treated for that. I really feel for all of us and anyone dealing with this issue. It has definitely made my life more difficult and my symptoms are considered "mild."
Blank
Avatar_m_tn
Try the Epley chair available at Mayo and a few other places. It's helped dx and treat me more than the manual moves. PT doesn't work if ear crystals aren't stable. Some of the most serious persistent cases are because BPPV is in both ears or in the difficult to diagnose anterior canal.

It's not all in your head, but in your ears. Don't let doctors diagnose you as anxious when you know the vertigo came first!
Blank
Avatar_m_tn
I've had vertigo for over 21 years, I was officially diagnosed with BPPV in 2000. A lot of times I have an intense itch on the inside of my ear, slight facial numbness, stiffness in my neck, blurry vision, on the right side off my face only. I've tried Antivert which just made me sleepy, what works best for me is a simple antihistamine like Sudafed. and if I get  a headache, which I often times do, I use Sudafed Sinus pressure and pain and do the Epley maneuver. My doc also suggested an over the counter allergy medication to prevent an increase in fluids due to allergies, which I am now taking seasonally. My vertigo comes only from my right ear, so I try to lay on my left side when I sleep or lay on the couch, maybe that's where I get the stiff neck from, but it does prevent the attacks a bit! I still get an attack about 5 times per year but they won't last as long anymore since I've been doing the Epley in conjunction with the antihistamin. So instead of being sick for weeks it might take 2 to 5 days.
Blank
Avatar_m_tn
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.
Blank
Avatar_m_tn
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
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Ear, Nose & Throat Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank
Top Ear, Nose, Throat Answerers
612551_tn?1247839157
Blank
Jerry_NJ
NJ
209987_tn?1334790318
Blank
tschock
AB
6423135_tn?1381947504
Blank
zombie_pikacha