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.
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.
The following user gives a hug of support to Longshort: Loppylugs (01-20-2012)
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!
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.
The Following User Says Thank You to warpony2310 For This Useful Post: bindar (04-13-2011)
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!
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.
The following user gives a hug of support to warpony2310: bindar (04-13-2011)
The Following User Says Thank You to warpony2310 For This Useful Post: bindar (04-13-2011)
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.
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.
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.
The following user gives a hug of support to loribt2002: bindar (05-03-2011)
The Following 2 Users Say Thank You to loribt2002 For This Useful Post: bindar (05-13-2011), fblvr (05-03-2011)
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.
__________________
...R
The following user gives a hug of support to fblvr: bindar (05-03-2011)
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.
The following 2 users give hugs of support to: bindar fblvr (05-10-2011), loribt2002 (05-03-2011)
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!
__________________
...R
The following user gives a hug of support to fblvr: bindar (05-10-2011)
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!
Thanks for all the kind words again! I have been paying careful attention to my symptoms and I have noticed a lot of positional nystagmus in my left eye. It has been stronger than usual lately. That will be very helpful when I get my testing done!
Im sorry to hear that today is a very symptomatic day! I am also surprised that your symptoms returned so quickly and severely after one missed dose. If there is anything marginally beneficial from the unpleasant experience, at least you proved that your body is effected by Chlor-Trimetan. I hope you get this MAV sorted out, there may be a combination of medications that are even more effective. I really hope you start feeling better soon!
Sure hope both of you are doing better (Fblvr and Ichbindarren). I think I will go to the pharmacy tomorrow and try the Chlor-Trimeton and see if it will help me out. I am over the horrible "waves" of the vertigo dizziness, but not quite certain what's going on with me. I wake up in the morning feeling absolutely great but by about noon or 1:00 pm every day I start feeling light headed and woozy again. Not sure if I would actually call it dizzy, nothing is spinning, but it's not a good feeling at all. So maybe the ChlorTrimeton will help me. Do you think this is still a symptom of leftover bppv? I haven't gone back to the doctor because I really don't think it will do any good so I just keep doing the best I can. I tried to go out and do a little shopping today, but got light headed and sweaty so it wasn't much fun for me. I don't feel actually sick or anything like that, just not right. Does this sound familiar to anyone?
Thanks for all the kind words again! I have been paying careful attention to my symptoms and I have noticed a lot of positional nystagmus in my left eye. It has been stronger than usual lately. That will be very helpful when I get my testing done!
Im sorry to hear that today is a very symptomatic day! I am also surprised that your symptoms returned so quickly and severely after one missed dose. If there is anything marginally beneficial from the unpleasant experience, at least you proved that your body is effected by Chlor-Trimetan. I hope you get this MAV sorted out, there may be a combination of medications that are even more effective. I really hope you start feeling better soon!
Hi again, i-darren! Welcome but sorry to hear you are experiencing that nystagmus. I was not aware it could only happen in one eye. I know it is not a pleasant symptom -- I had it with both eyes and found reading text most difficult when it happened. Like you said, it is definitely helpful to have symptoms occur when you have testing done so good luck!
My missed dose of Chlor-Trimeton was a 12 hour dose which I take before I go to sleep so that I have meds in my system in the morning which is the worse time for me. I take 4-6 hour dosage during the remainder of the day which works fine. I just am so surprised that I felt as bad as I did this morning. Like I said before, I'll definitely be more careful from now on!
Wishing you good luck with your upcoming tests. Until next time -- take care and feel well!
Sure hope both of you are doing better (Fblvr and Ichbindarren). I think I will go to the pharmacy tomorrow and try the Chlor-Trimeton and see if it will help me out. I am over the horrible "waves" of the vertigo dizziness, but not quite certain what's going on with me. I wake up in the morning feeling absolutely great but by about noon or 1:00 pm every day I start feeling light headed and woozy again. Not sure if I would actually call it dizzy, nothing is spinning, but it's not a good feeling at all. So maybe the ChlorTrimeton will help me. Do you think this is still a symptom of leftover bppv? I haven't gone back to the doctor because I really don't think it will do any good so I just keep doing the best I can. I tried to go out and do a little shopping today, but got light headed and sweaty so it wasn't much fun for me. I don't feel actually sick or anything like that, just not right. Does this sound familiar to anyone?
Hi Loribt! The drug in Chlor-Trimeton (chlorphenramine maleate) is also OK in a generic form -- and I find it helpful to take both the 12 hour and 4-6 hour dosages (see my earlier reply to Inchbindarren today for more details). What is weird is that I'm worse in the mornings while you are in the early afternoon. I know what you mean about not feeling quite right because that happens often. I do hope it helps you too because I found out about it on HealthBoards from someone else. Please let me know how you make out -- thanks!
Sure hope both of you are doing better (Fblvr and Ichbindarren). I think I will go to the pharmacy tomorrow and try the Chlor-Trimeton and see if it will help me out. I am over the horrible "waves" of the vertigo dizziness, but not quite certain what's going on with me. I wake up in the morning feeling absolutely great but by about noon or 1:00 pm every day I start feeling light headed and woozy again. Not sure if I would actually call it dizzy, nothing is spinning, but it's not a good feeling at all. So maybe the ChlorTrimeton will help me. Do you think this is still a symptom of leftover bppv? I haven't gone back to the doctor because I really don't think it will do any good so I just keep doing the best I can. I tried to go out and do a little shopping today, but got light headed and sweaty so it wasn't much fun for me. I don't feel actually sick or anything like that, just not right. Does this sound familiar to anyone?
I sure hope you can get relief soon too! I would consider seeing your doctor again and discussing the residual effects from your BPPV. It is possible that there are still stray particles in one of the canals, or even in the other ear. If your doctor isnt helpful, ask for a referral to a dizzy clinic. The Chlor-Trimeton is worth trying diagnostically, but it is only useful to treat MAV.
The Following User Says Thank You to bindar For This Useful Post: loribt2002 (05-14-2011)
I am also surprised that your symptoms returned so quickly and severely after one missed dose. If there is anything marginally beneficial from the unpleasant experience, at least you proved that your body is effected by Chlor-Trimetan. I hope you get this MAV sorted out, there may be a combination of medications that are even more effective. I really hope you start feeling better soon! 
