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Old 01-05-2011, 11:04 AM   #1
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I cant get rid of my BPPV

I have been suffering from severe BPPV for 8 months now. I have seen an ENT and a PT but they were both useless. I have tried the Epley maneuver about 200 times on both sides of my head. I have also treated the horizontal and anterior canals multiple times without achieving relief from vertigo.

I have been able to resolve the extreme vertigo and nausea, but I still suffer from pretty serious vertigo when I move my head.

I know I need to see an Otologist, but I am waiting till I get health insurance.

Has anyone experienced anything like this?

 
Old 04-05-2011, 10:56 AM   #2
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Re: I cant get rid of my BPPV

I am in the same boat. I am 8 months into this without a clear answer. I had two episodes of spinning vertigo in the first two months followed by 6 months of unsteadiness and balance problems all day long. It is getting better about 3-5% per month, at best. When I close my eyes, I feel like I am floating and moving in a turbulent airplane.

MRI negative. Blood negative. Audiology negative, no hearing loss. Full range of testing for half a day at specialty dizziness clinic showed only reduced posturography
(70% of normal) and hypofunction of left ear 25%. Diagnosis bppv, OR migraine associated vertigo, OR imbalance due to past ear infection, OR vestibular neuritis, OR whatever. They told me I have a migraine, a silent migraine without a headache constantly for 8 months. Does that sound plausible? I have tried Topamax, it gave me weird thoughts; they also prescribed antidepressants which I refuse to take since I am not depressed and don't want to risk gaining weight or have my hair fall out (whoever said "Vanity, thy name is Woman" didn't account for me). The only thing that works is a valium before bedtime so I can sleep soundly. For the first 5 months I could not even work a full day, let alone do my usual daily running. Now I can do these things, but I am still struggling with this. Everyone says, "You look fine."

I went to PT for months. First they said I had crystals in the left horizontal canal, so I did the left roll for weeks. Then they said I had crystals in the right horizontal, so I did the right roll foir weeks. Then they said it was right posterior, so I did the Epley for weeks. Finally they just gave the fu** up and said they weren't sure what I had.

I am incredibly frustrated, as you must be.

My ENT told me -- to my face -- that I would be fully cured within four months of my vertigo attack since I definitively had bppv and it always resolves in 4 months. Now he refuses to take my calls.

My neurologist took out some chart and said I definitively had bppv and it would go away. He also refuses to take my calls.

These people are doctors but they cannot do basic math. They claim that the maneuvers have 90% success rate. Ok. Well, I did three maneuvers. If each had a 90% success rate, then the combined success rate is .999 (i.e. if you take 1000 people and the first maneuver cures 900, that leaves 100 of which 90 are cured by the second maneuver, and then 10 of which 9 are cured by the third maneuver, and so on). So what am I, the one guy in a thousand who cannot get cured?

The whole thing can drive you nuts. In the end, I have concluded that I have some ear disorder that will take years for my brain to compensate. End of story.

 
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Old 04-05-2011, 04:40 PM   #3
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Re: I cant get rid of my BPPV

I guess that we are both the 1/1000 patients who dont get relief from BPPV, or we have a different type of problem. I have often wondered about having MAV, I actually suspect that could be the case. However, I do have evidence supporting the presence of BPPV because before I did the Epley my vertigo was so bad that I couldnt even lay down or walk without getting moderate-severe nausea. So I can confirm that I BPPV accounted at-least partially for my symptoms. Since then, I only get vertigo when I move my head, I can now walk and lay down with only minor vertigo instead of severe vertigo. I have a very faint left eye nystagmus, I suspect that I have cupulothiasis.

I would definitely find another ENT (preferably otologist) and Neurologist to talk to, yours have reached the end of their abilities. I think that your vertigo can be cured, you just need to find the right treatment. What about seeing someone with the Epley Omniax chair for a better diagnosis and possibly treatment? If you do have MAV, it often takes several months and trials with different medications to achieve results. I would give this some consideration once again.

I havent been able to cure mine yet because I dont have health insurance, so I cant afford to see the doctors. But I will be getting insurance in a few weeks, thank God!

Last edited by bindar; 04-05-2011 at 04:42 PM.

 
Old 04-06-2011, 08:24 PM   #4
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Re: I cant get rid of my BPPV

Best of luck to you both -- feel better.
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Old 04-07-2011, 05:45 PM   #5
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Re: I cant get rid of my BPPV

I had particles there for 12 years (bppv).

1. The doctor cleared both ears the way he did the eply (it was different)then the way I had it done for 12 years.

2. He made me grab his forearm then turn my head to bad ear side (left or right)then he took me back down (down position on table) (BAM) right there is where he applies the vibrating device ,to move all particles out of there.

3.(THAT TAKE DOWN MOVE IS IMPORTANT) he cleared two ears after 12 years


4.no more boat floating feeling when lying down,although I do have balance and dizzy problems from migraine , I do feel the particles are gone out of that area.

 
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Old 04-07-2011, 10:43 PM   #6
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Re: I cant get rid of my BPPV

Thanks for sharing your story. I think that mastoid vibration is important in intractable cases like yours and mine. I have been practicing the Epley maneuver for 9 months now with only minimal gain, I hope an otologist/neurotologist will have some new suggestions!

 
Old 04-12-2011, 06:51 PM   #7
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Re: I cant get rid of my BPPV

Do you guys think that mastoid vibration and the quick take-down might make the condition worse?

I am at 8 months, seemingly intractable case of bppv. But I don't want to add insult to injury by sending the crystals flying again.

Do you think I should give it a try?

 
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Old 04-12-2011, 09:44 PM   #8
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Re: I cant get rid of my BPPV

No It will not hurt ,you must get a good understanding of what is going on with the particles and the ear. The quick take down makes them move where they should go,I no it is scary and easy to blame any new thing on how you feel.

1.test each ear one a week,do a hallpike after the epley the next week (do you understand)? when the doctor throws you back on the table a week later on the left side (left ear) (hallpike) don't do the full epley manuever,if your eyes are still jerking around in your head (or the room is spining) the epley did not clear the particles!!!!!!(don't let him say duh) or log roll stuff go back and try the eply again.

2.THERE MUST be something to this my doctor cleared both my ears after 12 years with his (epley ) (which was different then others).

let me know if you need more info.

 
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Old 04-13-2011, 02:59 PM   #9
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Re: I cant get rid of my BPPV

Quote:
Originally Posted by Longshort View Post
Do you guys think that mastoid vibration and the quick take-down might make the condition worse?

I am at 8 months, seemingly intractable case of bppv. But I don't want to add insult to injury by sending the crystals flying again.

Do you think I should give it a try?
I agree with warpony2310, mastoid vibration and a quick take-down can help if the standard Epley maneuver treatment is not effective.

 
Old 04-15-2011, 05:40 PM   #10
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Re: I cant get rid of my BPPV

Hope you get over your vertigo. I suffered for 30 days straight with bppv. I guess that's not a long time compared to what you are going through. I was miserable every day, all day, couldn't work, drive, and hardly left the house except to go to the doctor. I went to my doctor and an ENT, had all kinds of tests done, but everything was normal. I did the Epley maneuver and also the Brandt-Daroff on my own many many times during this time. Tried the patch behind the ear, made me worse. Tried valium, no idea if this helped or not. Antivert didn't help. I also started taking Claritin during the day and Benedryl (antihistamine) at night. Don't know if it helped, but I know I was willing to try just about anything to get some relief. Then one day last week, I woke up in the morning and was about 50% better and have gotten a bit better every day now. It took several days to come out of my 'brain fog', but I think I'm finally over it. So there is hope, and I really hope you can get some relief soon. Have you tried nasal spray (for sinus). I went to my doctor today for a follow-up and my annual physical and he told me there really isn't anything that they (the medical profession) can give us for bppv or any kind of vertigo and/or dizziness to cure it. They just try and give us something to help us feel a little better until it goes away by itself. Maybe the combination of the exercises and the allergy medicines helped me. I don't know, but from the research I did, it looks like we need to train our brain to compensate for this condition, so we have to force ourselves to be as active as possible. I did read that by just laying around it will take our brain longer to retrain itself to compensate, but I also know that is easier said than done. It was all I could do to get from the bed to the couch some days. Again, I certainly hope anyone with this condition will be able to come out of it. I don't think anyone who has never had it has any idea how debilitating it is.

 
Old 05-03-2011, 11:27 AM   #11
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Re: I cant get rid of my BPPV

I finally got health insurance so I will be visiting a GP today and asking for a referral to an ENT or Otologist who can do ENG testing to find out which canals are effected.

 
Old 05-03-2011, 12:58 PM   #12
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Re: I cant get rid of my BPPV

Good Luck. I know from reading your threads, you have really been suffering. I finally got over my actual "vertigo" attacks, but I still don't feel like myself. I feel woozy and light-headed every day, not actually dizzy but not well either. Don't know now what's causing this. Maybe this is as good as it gets and I might have to just get used to it. I don't see any point in going to the doctor again, it seems like they don't have a clue either. Hope you can get to the bottom of your vertigo problems and start to feel better. It's so debilitating, it's horrible.

 
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Old 05-03-2011, 05:58 PM   #13
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Re: I cant get rid of my BPPV

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Originally Posted by ichbindarren View Post
I finally got health insurance so I will be visiting a GP today and asking for a referral to an ENT or Otologist who can do ENG testing to find out which canals are effected.
Hi there and congrats to you! I hope you get some answers real soon -- you truly deserve it as you are always there for everyone else. Thank you for all your help, knowledge, and suggestions.
I am still suffering with my vertigo some but it is much better after the past 2-1/2 months. I have been off the meclizine for about about 5 weeks now and still taking the Chlor-Trimeton -- but doing OK and can manage. I can deal with this and it seems it is getting a little better each week.
Please keep us posted on how you are doing -- I hope you receive some helpful info shortly and can get yourself on the road to feeling better.
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Old 05-03-2011, 06:25 PM   #14
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Re: I cant get rid of my BPPV

Thanks for the nice things that you both said!

I saw my GP today and he gave me a referral to the healthcare organizations head and neck specialist department (ENT). It was a little difficult at first because he said they generally treat the symptoms till they spontaneously resolve: It is unfortunate that this is the default for the medical system. However, my GP called the head and neck specialist and the specialist said that I should be assessed and given some tests. So I will be scheduling an appointment with them shortly.

I also just found out that my health care network does do ENG testing in the Audiology department in Oakland. This is great news because I didnt think they had access to this equipment. I will ask my ENT specialist for this.

Last edited by bindar; 05-03-2011 at 11:36 PM.

 
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Old 05-10-2011, 05:59 PM   #15
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Re: I cant get rid of my BPPV

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Originally Posted by ichbindarren View Post
Thanks for the nice things that you both said!

I saw my GP today and he gave me a referral to the healthcare organizations head and neck specialist department (ENT). It was a little difficult at first because he said they generally treat the symptoms till they spontaneously resolve: It is unfortunate that this is the default for the medical system. However, my GP called the head and neck specialist and the specialist said that I should be assessed and given some tests. So I will be scheduling an appointment with them shortly.

I also just found out that my health care network does do ENG testing in the Audiology department in Oakland. This is great news because I didnt think they had access to this equipment. I will ask my ENT specialist for this.
Hi there! May I call you "i-darren"? I hope that is OK with you today. Hope you are doing OK. So happy you are insured now and on the road to getting more testing done. Good luck with your upcoming testing!

I was doing fairly well and took a slip for the worse today. I forgot to take my OTC Chlor-Trimeton for my vertigo symptoms last night and boy did I wake-up much worse, dizzy and off-balance. The boat-like swaying feeling of back and forth was magnified today. Guess I am just surprised that the symptoms were so severe after missing one overnight dose. Won't make that mistake again!

Take care and feel better!
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