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

[Normison]

My symptoms virtually duplicate your's.  Has all resolved since?  

Norm

[sctgal]

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.

[wobblyMA]

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?

[ski01]

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?

[Hillswick]

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!!

[shamesly]

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

[DFColdsteel]

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

[NikoS]

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

[BADder]

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.

[zulka180]

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

[Chuck777398]

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 ***@****

[Tinkerbear]

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.

[fliss4]

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.

[annaone]

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.

[sukh73]

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.

[Harpasig]

Hi

[Harpasig]

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.
:)

[dalu554]

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

[dalu554]

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

[sonny49842]

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.

[JenSann]

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