Share your experience with vertigo (BPPV) as patient or medic

Miscellaneous and Personal Stuff I Must Share
1

About 15 years ago or so, I was driving home and making a right turn when the car flipped over. It didn’t actually, but that’s how it felt. Suddenly everything seemed to be spinning. Fortunately, I was only two blocks from home, and I managed to get there and get up to my condo. It was my first experience with what I soon learned is called Benign Paroxysmal Positional Vertigo, or BPPV.

The first episode lasted a few hours. I was driven to a doctor who prescribed meclizine (aka Dramamine), which had little effect – I have fortunately never had nausea with my vertigo – and told me about the Epley Maneuver, which turned out to be somewhat more effective, but only about about a quarter of the time.

ISTR that the vertigo returned once or twice in the next few days, but then stopped completely for several years. Between then and now, it has recurred maybe three or four times, with two or three episodes each time, then gone away again.

Generally, when it happens I try the Epley, and if that doesn’t work I just sit up straight in bed, and wait it out. Usually the worst symptoms pass in an hour or so.

Then, back at the end of May, it came back. One severe episode, which passed in a couple of hours, has been followed by several minor ones and a couple more serious ones in the past seven weeks. This is unlike all my previous experiences, in which a handful incidents were separated by years of no vertigo.

I had very severe symptoms late on the night of the Fourth, through the night, and into the next morning. I was able to sleep for much of it, but unlike all previous occasions, I still had bad vertigo when I woke up.

My wife had done some online research and found that vertigo can be caused by viral or bacterial infections, which gave me some hope that perhaps a simple course of antibiotics might eliminate it. She also found that dehydration and electrolyte imbalance can cause it. I had done some heavy yard work the previous afternoon, and drinking some Gatorade Tuesday morning seemed to help a little. But generally, I’ve always been pretty good about hydration, and there wasn’t a strong correlation between previous episodes and heavy sweating or dehydration.

I saw my current doctor on Tuesday afternoon, and he pointed out that since I didn’t have fever, hearing problems, or other symptoms, infections are probably, but not entirely, ruled out. He gave me a referral to an ENT, but his earliest appointment isn’t for six weeks. :pleading_face: I’ve asked to be called if there are any cancellations before then.

Today I woke up feeling better than I have in several days, but I’m worried about the frequency of the recent episodes and am hoping that this is not the start of a new trend. Vertigo is considered “benign” and “not serious” because it doesn’t do any organic damage, but it is certainly debilitating, and potentially dangerous if it were to come on while I’m driving.

I would really like it to go away for a few years, as it has in the past.

Have you experienced or treated vertigo? How have you coped, or advised your patients? Thanks.

2

Has no doctor suggested Meniere’s Disease? My mother had this and I know it has something to do with inner ear but don’t know details; I know also that she took medication and it helped a great deal. Seems from the internet that vertigo is the primary symptom of Meniere’s. I’m surprised if it hasn’t come up for you.

3

My doctor didn’t mention it specifically, but since I don’t have any of the other common symptoms – hearing loss, tinnitus, etc. – he probably ruled it out or thought the ENT would test for it.

4

I have had Meniere’s for several years, primarily in my left ear. The most intense episode I’ve had lasted about seven hours, during which I had to lie on the bathroom floor with my head tilted JUST so. It was the only way to avoid nausea. Tilting my head even slightly caused intense vomiting.

I’m under the care of an ENT specialist.

First, I keep my BP very low, usually around 105/65. I take a diuretic on a daily basis and then take an additional dose of triamterene if I feel “fullness” in my ear.

Second, I avoid salt and spicy foods. These tend to raise my BP.

Third, I carry a small pill vial with both triamterene and meclizine pills. Again, if I feel any fullness in my ear or a slight bit of “lag” when I move my eyes, I take one of each and try to lie down for at least an hour.

I’ve been fortunate that I have not had a severe episode for about a year. But I do feel “odd” from time to time and always take immediate steps to reduce the likelihood of an episode.

Good luck!

5

My experience likely isn’t going to be useful, other than a data point. I’ve had probably four BPPV episodes over the last 5years. The first time, once I realized what was going on, I made an appt with my ENT. He wasn’t available, but his PA was wiling to see me. She did a tilt table test to verify the diagnosis - she said it was a classic presentation. Ran through the Epely stuff twice, and told me not to lay down on my side for a day or so. It was magical and all my BPPV related dizziness vanished.

The other times it’s presented, I recognized it quickly, did a quick youtube refresher, and treated myself.

I do have to say the first time was freaky, because I KNEW I was lying still on my sofa, and I also KNEW that the room was, in fact, spinning.

Good luck!

6

Meniers is generally a hell of a lot more debilitating than the OP describes.

About ten years ago I was sitting in the seat of my truck waiting for a load and dozing. Without any warning, I felt as if I was doing somersaults. My immediate thought was that something had hit the rear of my vehicle, but I soon realised that it was all in my head.

If I opened my eyes the whole world started spinning around and I threw up. I was eventually taken to A&E where they gave me prochlorperazine for nausea and I was eventually diagnosed with labyrinthitis, a disease of the inner ear that affects balance. I was off work for a couple of weeks but kept getting attacks over the following year, Fortunately, I could feel an attack coming on, so was never in any danger.

It was about a year before I stopped getting them, although I did find that reading was a problem for a while and after an hour or so I had to take a break and look at something more distant.

7

I had my first ‘episode’ probably 10+ years ago and it lasted for 3 or 4 days. Luckily I don’t get motion sickness and so didn’t have any nausea to contend with, but got pretty tired of careening into walls and falling on the floor when I tried to sit down in a chair.
I searched on the internet on vertigo, which led me to BPPV, which led me to the Epley maneuver. I tried it on myself lying on the bed and got some relief, so I repeated it some number of times over the next couple of days until I returned to (mostly) normal.

Since then it’s recurred at very long intervals and sometimes lasted for a few hours until I Epley myself enough times to get back to normal. I have discovered that it matters which way you turn during the Epley maneuver. If I start out turning to my left side it doesn’t do anything for me. I believe it’s because of which ear is affected, so if it doesn’t work for you one way, turn the other way and see if that works.

Nowadays I can still get a little dizzy if I turn my head to the side while walking, or when I bend over, and of course I don’t go up on ladders any more, but mostly I can carry on as normal.

I don’t have any trouble at all while driving.

Good luck!

8

In the ER, patients with BPPV were not unusual. When I was young and inexperienced, I treated those patients with medication (usually diazepam (Valium) on the advice of an ENT who told me it worked better than the antihistamines).
And then I read about the Semont maneuver. I tried it on my next BPPV victim, er, patient. It was like magic. Complete relief after just a few minutes.
Subsequent uses weren’t always successful, but it worked more often than not. My sister called me one day with a good story for BPPV. I taught her the Semont maneuver over the phone. She called back a few minutes later, much more comfortable, and impressed with my doctoring skills. :mask:

9

I started getting BPPV when I was doing chemo, so for about 6 years now.

I was spending the vast majority of my time in bed, and it started hitting me. The PA ran me through both positions, but I discovered that if I basically just split my time alternating sides I was laying down and reading on my phone I could avoid most of the issue.

I don’t have a preference which one I use, for me they both work if flipping sides doesn’t keep it away.

10

I get what is probably BPPV occasionally. Fortunately it seems pretty mild. I can move around and stuff, it’s just very unpleasant. I don’t feel nauseous immediately, but if I stop concentrating on not being nauseous, then it can happen. Once it’s active, the world will take an extra half turn whenever I move my head.

The first time it happened I found the Epley maneuver (who says Dr Google is worthless?), and that seems to help tremendously. Once I get it right, it will go away completely. Until I get the Epley right, the episodes will fade in and out depending on my orientation.

Because they tend to happen at night (when I lie down), and improve on their own, I’ve never been to the doctor while it’s happening. I did describe it to my GP, and she said it sure sounded like BPPV, keep doing the Epley, and talk to her if it gets worse.

What I find ironic is that I’ve never gotten any form of motion sickness from real motion. Planes, cars, boats, roller coasters, and such don’t upset me at all. A little rock in my ear, and some first person shooters, will make me feel like I’m about 5 drinks in.

11

Thanks for mentioning the Semont maneuver. It looks much easier to do than Epley, especially if a bed doesn’t happen to be available.

Two of the most severe incidents I had in the last few weeks were when I was at my wife’s school and in a museum. In both places I tried to do Epley on the floor, but it didn’t help. At the museum I was able to find a secluded spot with carpeting, and explain what was going on to the nearest staffer, but I ended up just sitting still with my head tilted back for an hour or so.

Today was the first time since the weekend that I’ve felt 100% okay all day. It’s been great. I hope this continues.

12

BTW, how do you tell which side is affected and which way to do the Epley or Semont? I haven’t figured this out, and sometimes I just do one way then the other right after if the first didn’t help much.

13

I’ve had episodes of vertigo a number of times over the years. They almost always start when I have been lying down, and shift my head, either rolling over, or sitting up. The sensation of the world spinning is incredibly realistic - I’ve had to throw my arms across the bed and grab on to keep from flying off of it (or, at least that’s what it feels like). Generally, the episodes dissipate after a few days, and while I’m having them, I’m careful not to move my head suddenly. One time, I made the mistake of doing one of my favorite exercises - sit-ups using a punching bag (hop up on the bag, wrap my legs around it, and then do sit-ups). I had just started, and got a terrible attack. I squeezed my legs as hard as I could, and just hung there upside down with my eyes closed until the world stopped spinning, and then carefully got down and crawled away. I pretty much avoid any exercise where I have to be upside down now.

14

I had dizzy spells periodically through my life with different causes.
The hardest one to determine the reason for the dizzy spells ended up being caused by nitrous oxide, which is very unusual. Since I found that out, I make sure no one gives it to me.

A few years back, I had another series of dizzy spells. This got me into quite a number of tests. I ended up in a hearing and balance center. She tried the Epley maneuver, which did nothing. Then she blew cold air in each ear, and the same thing with hot air. The room would spin when she blew air into one ear and not the other ear.

She explained that when you blow cold air into one ear, it would feel like the room was spinning. Change to hot air, and the spin would reverse. Switch sides, and the spin direction would reverse.
Because I was only having the response in one ear, she conjectured that I had had an ear infection that left some scar tissue. She said that my brain was getting mixed signals which caused the dizziness, but that my brain would recalibrate and the dizzy spells would go away.

She also explained why the Epley maneuver works. Sometimes stone develop in the cochlea, and sometimes the stones get stuck. The maneuver basically shakes the stones loose!

15

Not exactly. According to the Mayo Clinic,

BPPV occurs when tiny canalith particles (otoconia) in one part of your inner ear break loose and fall into the semicircular canals of your inner ear.

The canalith repositioning procedure can move these particles to a part of your ear where they won’t cause dizziness.

16

I don’t know what I have, and doctors and other medical folks don’t, either.

I had two very violent attacks of dizziness 35 years ago, and a bunch of testing, and got a Meniere’s diagnosis. I have had mild dizziness, weird audio events in both ears, and strong tinnitus, ever since. Treatment has been HCTZ and sometimes meclyazine. But at 65 I have typical hearing loss (not quite at the hearing aid level yet), and I do not have the low frequency loss typical of Meniere’s.

I visited my audiologist about a month ago and he had nothing concrete to offer, other than the observation about low frequency loss. He asked if I would like to try some physical therapy, and then wrote up a scrip for PT with a BPPV diagnosis. The first four PT sessions we spent entirely on trying positional movements. These did nothing to improve the dizziness, other than to stir up some additional dizziness which happens whenever I move around anyway. The PT diagnoses no BPPV but clearly some problem.

Since then, the PT has focused on trying other things. One thing the therapist discovered is that I have poor automatic positional feedback to control my eye motion (there’s a hardwired system including nerves directly from the ears to the eye muscles, and mine has a bit of a deficit). Then she discovered that I have more of a deficit in the proprioceptive sense in my neck (there are sensors in the neck muscles that tell the brain how the head is oriented with respect to the body). This seems to be the most remarkable thing right now. With a laser pointer strapped to my head, and my eyes closed, I do a pretty poor job pointing my head away from a target and then coming back to it. I have a pretty bad cervical spine, not a single normal disk left, with a lot of nerve root damage and some spinal cord impingement, and have had a C5-6-7 fusion.

So we continue looking, and I remain a bit dizzy all the time. I have various tricks to dealing with it. When cleaning house, for example, I try to remember how many times I’ve turned to the left and how many times to the right, and keep the numbers the same. I don’t know if much is going to improve, but we’re trying!

17

Thanks for recounting your experience, and I sympathize. I hope you can find a diagnosis and/or some effective treatment.

In the meantime, after a completely non-symptomatic day yesterday, I woke up with very mild vertigo. Dammit! I have stuff I wanted to do today! I tried Semont, without much success, but I’ve just realized that I’ve been doing Epley a bit wrong, because I haven’t been holding still in the upright position at the end for long enough.

I’m a side sleeper and often roll from one side to the other during the night. Has anyone heard whether that could be related to BPPV? Maybe I should try sleeping upright or on my back?

18

also consider trying the Modified Epley Maneuver
if Epley and Semont aren’t doing it for you

19

That’s exactly what I do. I assume the unmodified Epley is with the head hanging off the end of the bed? That’s impractical because my bed has a headboard. (I suppose I could do it crosswise. Never thought of that.)

20

I have gotten it scuba diving while ascending from depth and near the surface. As I understand it this is fairly common. It also only lasts a few seconds, but during that time I don’t know which way is up. Typically I will either look at my gauges which are analogue and will show quite a bit of movement with depth at shallow depths, look at the bubbles to get an idea of ‘up’ and/or look at the surface. It’s something I have gotten quite used to back when i dove a lot and really didn’t cause any issues. Having it for hours sounds horrible though, so sorry to hear you (and others) go through that.