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Old 03-30-2008, 02:29 PM   #1
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Questions about BPPV, does anyone have advice?

I hope someone might have some input. I know so many of you have been going through your dizzies for ages and being on this site has helped to share experiences. I'm trying very hard to get my life on track after being laid off and now not being able to work because of my vertigo. I used to be very active, road riding, mountain biking and hiking. Now I'm lucky if I make it to the supermarket once a week! It's been a long road with this. I've had some input from Stargrave (thanks!) and I'm wondering if anyone might know about the following:

I have been told by my vestibular therapist that I have BPPV. I've had many treatments (D.Hallpike, Epley, etc.) probably more than 9. The thinking is that it hasn't cleared because I might have fluid in my inner ears. So the ENT has me on a diuretic, on it now for 3 weeks. No change.

The problem I keep having is
I go to PT, I'm completely dizzy regardless of position for days, sometimes a week. It then seems to subside; just a little imbalance, some eye trouble with movement, but no spins. Then after I lay or put weight on my left side, I have a spin and then I'm dizzy, regardless of head position and it continues like this for weeks. So PT helps in that it rights the overall spinning, but only if I do not put weight on my left side.

Has anyone else experienced this?...Not being able to clear the crystals from one or both sides? And do you know why the crystals don't clear? I don't believe inner ear fluid is the absolute problem. I think there is more going on that none of the specialists seem to be catching on to.

I've been told that nystagmus is only caused by BPPV or crystals in the ear. Is this true? Has anyone found another reason for it to happen?

Thanks for any input you might have, and I wish you all well....snh39

 
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Old 03-30-2008, 02:38 PM   #2
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Re: Questions about BPPV, does anyone have advice?

snh39-

Hi! I, too, have been confused about nystagmus. I think it can happen for lots of reasons, and the kind of nystagmus can help doctors determine the cause. Vestibular neuritis can cause nystagmus, and migraine can cause it too. I've been researching this but still don't understand it very well...I think central vertigo is more likely to result in vertical/rotary nystagmus, while VN is more likely to cause nystagmus in one horizontal direction (if one side is injured), but this may not be true all the time. I'm sure this doesn't help a great deal, but I wanted to let you know that other things can cause nystagmus.

Could you have BPPV problems on both sides, which would make it more difficult to resolve with the maneuvers? I haven't experienced BPPV as of yet, so I'm not sure, but that might be a complicating factor...

--Violet

 
Old 03-30-2008, 11:55 PM   #3
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amww HB User
Re: Questions about BPPV, does anyone have advice?

You really need to see a neurotologist. An ENT is not a dizzy specialist and may not be diagnosing you correctly or offering you the right treatment.

Even if you have to travel to see a top one, please do it - you only have to do it once and it may well make a huge difference from such a small investment in time and money.

 
Old 03-31-2008, 09:09 AM   #4
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Re: Questions about BPPV, does anyone have advice?

Quote:
Originally Posted by admw View Post
You really need to see a neurotologist. An ENT is not a dizzy specialist and may not be diagnosing you correctly or offering you the right treatment.

Even if you have to travel to see a top one, please do it - you only have to do it once and it may well make a huge difference from such a small investment in time and money.

Admw, thanks for writing in. I've gone to a Neuro in the beginning. Did MRI's which came out normal. The Neuro said there were no signs of it being brain related. I will bring investigate further with my ENT, possible brain stem or pinched blood vessel issues.

Violet 6,
Thanks for writing too. I'll bring this up with my ENT. I'm hoping they can do more tests to determine why the BPPV keeps coming back. Are you having issues with BPPV as well?


Thanks for the suggestions,
snh39

 
Old 03-31-2008, 09:48 AM   #5
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Re: Questions about BPPV, does anyone have advice?

Hi, snh39--

I have not had symptoms of BPPV yet (knock on wood!). I think I have VN complicated by migraine issues. It began for me with incapacitating dizziness. Also, I could not read or watch TV because of eye problems...nystagmus. My ENG did show horizontal nystagmus that seemed to indicate a problem with the right ear to some docs. However, because my caloric test was normal, one doc feels I have migraine associated vertigo rather than an inner ear problem. Still, the caloric test is not always accurate and only tests part of the inner ear.

My nystagmus got gradually better, and at about six weeks I was able to read again, but not for long. My left eye still feels a tiny bit jumpy. I must say that gaze stabilization exercises really have helped improve my ability to focus.

I hope this helps...I know it's a bit different from what you're experiencing...

Note: Have you been going to the top vestibular therapist in your area? Some folks are much more experienced than others, and I think this can make a big difference.

--Violet

 
Old 03-31-2008, 12:28 PM   #6
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Re: Questions about BPPV, does anyone have advice?

Hi snh39

I'm new here and new to the whole BPPV thing (my first time was about 3 weeks ago.) I thought I just had a stomach bug with weird dizziness till a friend of mine told me how she was diagnosed with BPPV last fall. She was treated by the ER doc here (who at least knew how to do a Dix-Hallpike test), by some "specialists" in Idaho Falls, 90 miles away, with no improvement. Then she went to that therapist in Bozeman that I told you about, Nancy Astrup, who has the chair with the video cameras and diagnosed BPPV in both ears (which is probably why the previous treatments didn't work.) Anyway, after one treatment from Astrup my friend has been symptom-free since last fall.

Have you had any of that kind of testing?

I have an appt in Bozeman (200 miles from me) for next week; while my dizziness is much better, I want to have it looked at by an expert. I have been self-treating with Epley maneuvers per the Neurology article in this forum's sticky post ("Self-treatment of benign paroxysmal positional vertigo: Semont maneuver vs Epley"). This btw is a very interesting article, I recommend you peruse it if you haven't already.

It's still winter here, but in the summer I bicycle and use a motorcycle a lot. So I'm hoping for the best.

Good luck to you.

 
Old 03-31-2008, 05:31 PM   #7
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Re: Questions about BPPV, does anyone have advice?

Quote:
Originally Posted by cavenewt View Post
Hi snh39

I'm new here and new to the whole BPPV thing (my first time was about 3 weeks ago.) I thought I just had a stomach bug with weird dizziness till a friend of mine told me how she was diagnosed with BPPV last fall. She was treated by the ER doc here (who at least knew how to do a Dix-Hallpike test), by some "specialists" in Idaho Falls, 90 miles away, with no improvement. Then she went to that therapist in Bozeman that I told you about, Nancy Astrup, who has the chair with the video cameras and diagnosed BPPV in both ears (which is probably why the previous treatments didn't work.) Anyway, after one treatment from Astrup my friend has been symptom-free since last fall.

Have you had any of that kind of testing?

I have an appt in Bozeman (200 miles from me) for next week; while my dizziness is much better, I want to have it looked at by an expert. I have been self-treating with Epley maneuvers per the Neurology article in this forum's sticky post ("Self-treatment of benign paroxysmal positional vertigo: Semont maneuver vs Epley"). This btw is a very interesting article, I recommend you peruse it if you haven't already.

It's still winter here, but in the summer I bicycle and use a motorcycle a lot. So I'm hoping for the best.

Good luck to you.
Thanks for the info. I'd love to see MT again, so I might look that Dr. up. I've done vestibular therapy with a very experienced PT for the last 5 months. Between the PT and the ENT, they think there's just fluid in the ear, which is why the crystals are blocked and not clearing. I went today to clear the posterior canal (major spins). She did the Epley. We'll see if there's any improvement after being on a diruretic (to reduce fluid in the ear) for 3 weeks.

I found it difficult to do at home - any of them. Because if you have crystals in multiple canals, you can't tell which manuever to do. PT is better I have found, in that they can tell which canal it's in and how to clear it, as well as what my nystagmus is indicating.

I'll keep going to PT after a few more weeks of the diuretic. Once I see the ENT, I'll will ask to have more tests done, another VNG, tests for central nervous system as well as another MRI - this time not for brain like the Neurologist did, but an actual ear MRI. I think if I can just get these people to give me some more tests, I might be able to rule out what's causing it to return constantly.

Amazing....so much time spent in appts. and waiting to see the specialists and trying this drug, wait and see, try that drug. No wonder people have this stuff for years on end. The docs tell me I've only just begun with it, and it's been 7 months of tests and appts! Insane.

I too bike (or used to), averaging about 30 miles in a day. I'd like to feel confident enough to ride again, and not worry about being roadkill.

I look forward to hearing how your appt. goes and what they do and suggest for you.

Take care and hang in there - - snh39

 
Old 03-31-2008, 08:54 PM   #8
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Re: Questions about BPPV, does anyone have advice?

Quote:
Originally Posted by snh39 View Post
Admw, thanks for writing in. I've gone to a Neuro in the beginning. Did MRI's which came out normal. The Neuro said there were no signs of it being brain related. I will bring investigate further with my ENT, possible brain stem or pinched blood vessel issues.
Hi snh39

I was actually referring to a neurotologist, and not a neurologist(usually shortened to neuro). They are specialist dizzy doctors, not ENTs or neurologists.

 
Old 03-31-2008, 09:27 PM   #9
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Re: Questions about BPPV, does anyone have advice?

Quote:
Originally Posted by snh39 View Post
Thanks for the info. Between the PT and the ENT, they think there's just fluid in the ear, which is why the crystals are blocked and not clearing. I went today to clear the posterior canal (major spins). She did the Epley. We'll see if there's any improvement after being on a diruretic (to reduce fluid in the ear) for 3 weeks.- - snh39
I wish I understood this better. The semicircular canals where the crystals are wreaking havoc are *supposed* to be fluid-filled, aren't they? So where is the fluid that it's not supposed to be?

Just wondering. I am curious about the mechanics of stuff, I like to get a handle on WHY things work the way they do. Currently I'm trying to find out why, if you get the crystals out of the sensitive areas, you seem to feel woozy for a few more days. At least that's what I've seen reported (and that's what seemed to happen to me the first time.)

Take care.

 
Old 03-31-2008, 10:47 PM   #10
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Re: Questions about BPPV, does anyone have advice?

Quote:
Originally Posted by cavenewt View Post
I wish I understood this better. The semicircular canals where the crystals are wreaking havoc are *supposed* to be fluid-filled, aren't they? So where is the fluid that it's not supposed to be?

Just wondering. I am curious about the mechanics of stuff, I like to get a handle on WHY things work the way they do. Currently I'm trying to find out why, if you get the crystals out of the sensitive areas, you seem to feel woozy for a few more days. At least that's what I've seen reported (and that's what seemed to happen to me the first time.)

Take care.

Yes, I'm not sure either. I haven't specifically asked or been able to with the 20 minutes of time I get with ENT's, nurses and such. It seems that they're referring to an extra amount of fluid, possibly too much which would cause pressure, making the crystals to sort of remain floating in a particular canal instead of allowing them to move.

Having the crystals come "loose" isn't normal; this debris is usually attached and doesn't free flow in the ear canals. So I guess draining some of the fluid that's normally there, will allow the debris to move through and out of the canals.

I've been told that there can be a residual effect of dizziness even after the stuff has moved through. You're body just feels it in anticipation. Which I partly agree with, but not entirely. I think it just takes a few days to a week to settle and not have the debris moving around. I've had this experience a few times. I go to PT, I'm horrendously dizzy, it takes maybe three days, then I start to feel like I can have movement again without episodes of spinning, the muscles in my neck and back relax, I don't have the unbalanced "loopy" feeling as much. It doesn't entirely go away, and if I lay or put weight on the wrong side, it brings the whole problem on again, then it's off to PT to start another round.

I found too that it depends on what canal their trying to clear in PT, will determine how aweful I'll feel afterward. If it's the horizontal canal, or if they do Dix hallpike, it's worse. If they just work on the posterior canal with the Epley, then I can actually walk or drive afterward.

Sorry so long a reply, I have a hard time going back and editing, and I want to make sure I get it all down if it helps someone.

This stuff is so very complicated. I don't believe there's any exact science to it. You can be diagnosed one way and the appropriate treatment doesn't necessarily help like it should. Sometimes you discover the diagnosis during the treatment. Regardless, it's just so time consuming and puts your life literally on hold.

 
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