she noticed a nystagmus in my eyes, saw pressure in my lt. ear (as a few weeks ago), made me walk 6 feet worth of heel to toe and saw me stumble, made me stand with eyes closed and arms out...to which i swayed, but did not fall.
(none of these things were done by the neuro. i saw monday, who just simply told me when i asked about my dizzyness that she didn't know, maybe i'd had an ear infection)
after all of that she gave me a confident diagnosis of benign paroxysmal positional vertigo...a list of exercises to do if it gets worse, though at the moment it is a bit better, so she told me not to try them just now.
i told her about how i felt the neuro was very dismissive of me and she heaved a big sigh and agreed that the best course of action now was to indeed try the physio, wait for the results and then told me that together we will decide where to go from there.
so...question for all of you in the know....is bppv linked to ms somehow? is it considered a symptom, or just something that people in general get rather commonly?
Hi there, I'm not sure of the answer to that question... but I do know that alot of people with MS have Vertigo and it sometimes can be caused by bppv... inner ears and not central problem.
I know other will join in to give better advise on this one.. I hope the excercises your GP gave you help with the dizziness. Have you seen a ENT specialist for this... they usually check thing out about bppv.
Michelle, I'm glad you have such a great PCP. You are not alone in this, from the professional viewpoint.
However, I also think you should ask for a referral to an ENT for follow-up testing and an official report. You need that for your records and to show future neuros exactly what's going on. They may prefer to hear this from a specialist.
BPPV is a peripheral nervous system problem and not a part of MS. That doesn't mean you can't have both. A specialist will know how to treat it. I don't know why your doc told you to hold off, but if this is causing problems in your life I can't see just waiting.
i was out and about all morning in the heat with the boys, and got home to find the vertigo much worse. to boot--i'm meant to take the boys to a birthday party in an hour...it's a fair hike all over again, and i know it's to a shadeless backyard. yipes!
i feel bad to keep at my doc. so often...however, i'm going to go ahead with the exercises and if they don't help, then i think it's more than fair to request an appt. with an ENT.
and so true, about the documentation. that really is great advice. i hate to be pushy, but i suppose in this case i really should be.
i'll give it a few days and then back off to the doc. it truly is disturbing, and very hard to get work done!!
I second ess's advice - you need to see an ENT. I had BPPV and it is treatable and fixable but isn't done just by exercises, unless your doc gave you the ones where you roll all over the bed in serveral different head hanging positions.
BPPV is caused by crystals in your ears in the wrong place (yes Quix, that is not a very technical explanation but its the best I can do today! :-)) . These crystals are left over deposits of minerals, mainly calcium, from our body and other gunk in our ear canal. The crystals get dislodged from where they are supposed to be and travel outward and can cause havoc with our balance, even to the point of vertigo.
The maneuver the therapist does to get your crystals back in the same place is fairly simple. If it is going to work for your problem,you pretty much know within a few days.
here's a favorite site that explains all sorts of dizzy and balance things...
and here's a little animation showing the displaced crystals (otoconia)
I second everything Lulu has said. BPPV, or benign paroxysmal positional vertigo, is a problem of the inner ear, not the nervous system. But you can get nervous system vertigo,and you can get inner ear vertigo, so I'd definitely see an ENT so they can get to the bottom of it.
The reason this is called positional vertigo is because the vertigo itself is instigated by the changing of a position, most often lying down. I've been unfortunate enough to have this a few times, and each time, it was started by rolling over in bed. Sitting up or standing up makes it eventually go away, but while those rocks are rolling around in my ear, the vertigo is BAD. Really, really bad. I equate it to getting off a ride (like the teacups at Disney) that makes you really really dizzy, except in this case, you didn't go on a ride! I've had bad nausea and vomiting the times I've had the vertigo, neither of which was helped by pretty strong drugs. I just had to ride it out. While I have the awful vertigo I can't even stand up; I am so disoriented that I crawl where I need to go.
There are other disorders that can cause vertigo, but one of the things that distinguishes BPPV from other things is that the vertigo is usually started by laying down, and gets better by sitting up. Other causes of vertigo like Meniere's disease usually get worse upon standing and get better by lying down.
I can see how it would be tricky to determine whether vertigo has an ear or neurological cause. The main thing in BPPV is position. If your vertigo gets worse/gets better upon different positions then it would likely be BPPV. From what I've been told (by my neuro, but not an ENT) is that neuro vertigo isn't affected by position, and is more constant than episodic. Also, people with neuro vertigo can usually still function (again, this is from what I've been told, not by experience) whereas I KNOW from experience with BPPV, I cannot function at all. I stay perfectly still for a couple of hours until the vertigo stops.
I was diagnosed with BPPV because the doctor had me lay flat on the exam table with my head off. He took my head, tilted downwards, and to the side that I noted had started the vertigo. In that position, my vertigo started up with a venegance. I had nystagmus too. He then performed the Eppley maneuver, where, after my head had been in that position for a certain amount of time, he, as quickly as he could without wrenching my neck, turned my head to the other side. The idea is that it moves those "rocks" from where they are bouncing around causing trouble, to the canal where they belong. It worked for me.
The second time I had vertigo, I did the Eppley maneuver myself, twice a day for a week and it worked. It can be difficult to do though, because to do it right, you do have to give yourself vertigo again, and it is hard to sit there and wait the appropriate amount of time when you know if you just sit up it will feel better. Each night that you do the maneuver, you are supposed to sleep at a 45 degree angle. I found that these wedge pillows I got at Bed Bath and Beyond worked well. I didn't want to do anything to bring the vertigo on again!
Hope this helps! I am definitely not a doctor, but I've more experience than I've cared to with this. Good luck! BPPV is a miserable thing to have!!
I just wanted to add something. About 5 years before my onset of severe symptoms, I was working (transcriptionist) at a PC, and my head felt really funny as if I just could pass out. My ear kind of bothered me a little bit.
I went to my PMD and he said that I had labyrinthitis after having me sit up from a supine position, and asking me what happened. Well, of course, I felt extremely dizzy.
Fast forward after my severe onset of symptoms in 2003, I underwent tilt table test at Cleveland Clinic in which I was in the 40s (hypotension). I was told to increase the salt in my diet, wear Ted hose during the day, or take a beta-blocker.
I really wanted to state that, I feel, vertigo for me happens in any position. Sometimes it might be relieved by lying down, but then other times the room spins around even more.
Antivert, of course, is a great medication for vertigo.
Well, as a self-proclaimed expert in most things "vertigo" this has been a great discussion and everyone made really good and accurate comments.
I want to reiterate that you can have vertigo from both central nervous system problems (brainstem and cerebellum) and from problems in the inner ear.
BPPV - Benign (Ha!) Paroxysmal Positional Vertigo is, indeed, an inner ear problem. In the inner ear there are three semi-circular canals on each side. These represent the three planes of movement up/down, side-to-side, front-to-back. As we move our head in any direction it causes the fluid within the proper semicircular canal to flow back and forth. This movment is picked up by little hairs at one end. The hairs have tiny little crystals stuck to their tips to accentuate the movement.
In BPPV one or more of the tiny crystals has broken off and falls freely within the canal with head movement in the direction of that canal. This really makes the fluid move more than usual, so the hairs bend more than usual and send falsely violent signals of movement to the brain. The brain reads a small motion of the head to be a fall at 100 feet per sec or so. Because the sensation of falling is so violent, we "catch" ourselves with equal violence or vigorousness. Since we really aren't falling we may actually throw ourselves to the floor or back on the bed or sideways attempting to stop a fall that isn't happening. For 10 to 30 seconds or so we feel the violence movement (that isn't happening), then we have a recovery time of 30 minutes to a few hours where we can feel completely disconnected with the world and the proper working of gravity. During the acute "fall" (that isn't happening, lol) is when our eyes roar back and forth with severe nystagmus.
When the MS first caused me such severe central vertigo I fell and had a couple of concussions. Head injury or a whiplash are two of the most common causes of BPPV. So, then on top of the MS vertigo I had bilateral BBPV. I saw Dr. Epley, the developer of the cure for BPPV and he fixed that part. I had also suffered a perilymph fistula during a plane flight during all of this. He also repaired that leak of inner ear fluid into the middle ear.
So I have had vertigo from three causes in the inner ear and also from MS, probably in the brainstem since that is where my largest lesions are.
Dr. Epley's story is an interesting one and a great testimony to the fear of change by many members of the medical establishment.
The testing for BPPV involves exactly what Tiredofbeingnumb described. It usually starts with soething called the Hallpike test or a variation of it. I don't see that any of the testing you describe Michelle would be adequate to say BPPV or not. Also the treatment is not rightfully done by having the patient do exercises at home until the condition has been identified and successflly treated using the Epley Manuevers or one of the variations. So, while your PCP might be on the right track, she has not gone far enough.
I will third the recommendation to see an ENT but NOT ANY ENT. By and large it is my experience that the run-of-the mill ENT knows precious little about the subject and is likely to tell you it is an infection or you are stressed. Yawn....barf.
To find a doc who is skilled in treating BPPV you want someone who regularly treats it. Actually this can be a doc, a chiropractor or even a vestibular therapist who has been well-trained. I recommend that you contact a local vestibular clinic - often located in medical centers or large hospitals. You can also consult the Vestibular Disorders Association, VEDA, for the location of a vestibular specialist. They maintain a list of them in each state. Here is a site for finding one.
wow...as always quix, thank you sooo, sooo much. how is your leg doing?? i hope you are seeing and feeling some improvement...?
i can't believe you suffered three forms of vertigo!! all at once?? that must have been incredibly trying, albeit that some of it was benign (haahaaa!)!
could you tell the difference between all three forms, or do they feel about the same?
this post has given me a lot to think about, amazing, and i've read through it many times.
i am definately going to check out the websites mentioned...i am in canada but am sure i can nose around the internet to find some vestibular therapists here as well.
i like the chiro. route for trying to find someone well versed in treating it.
here i don't even need a referral for that, so that would be most easy.
it's amazing how one needs to self direct/advocate for their own medical path, isn't it? not that i'm anywhere near to that now...i'm in the taking advice and gathering info. stage--but one begins to see the health care system in such an entirely different way.
i suppose with my kids i feel a bit like this (advocates for their health), but it is new for me to need to direct my doc. a bit on issues relating to myself.
with so much gratitude i will trek on taking all wonderful advice forward,
I could tell the BPPV from the other stuff. That was the sudden whirling/falling after certain position changes. The other stuff was continual feeling of motion, difficulty being in visually busy environments, head fog, lack of balance, and constant queasiness, plus severe fatigue - much like MS fatigue except it was dependent on how long I had my eyes open.
When you lose the main supports for your equilibrium and balance, you begin to use your vision to tell you where you are in space. You use the horizon and vertical lines to stay upright. It turns out, that this is accomplished using conscious eye-movments as opposed to being done subconsciously. This is enormously fatigueing mentally. A perfect analogy is when a computer's CPU (subconscious mind) becomes unable to run a program (keeping your balance) internally and dumps it onto RAM (the eyes). The RAM memory bogs down with the added burden and the whole computer (you) runs sluggishly (fatigue).
So, vertigo adds a whole new dimension to the fatigue that people with MS feel.
Being in an environment where things are whizzing around (downtown sidewalk) or where there is visual "noise" (the brightly colored displays of a grocery store) can literally rend you unable to think.
When I was practicing in the little town in Nevada, a chiropractor friend's wife develped sudden dizziness. I diagnosed her with BPPV (over dinner one night) and recommended to him that he get the training video (About $200) on doing the Epley Maneuvers. He did and promptly cured his wife. (She thought I walked on water, lol). Thereafter, he became the town expert in treating and curing BPPV. It is a great fit for chiropractors, I think.
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