Full article reading time excluding linked videos about 15-20 minutes.
IMAGINE: you wake up in the morning and as you get out of bed all of a sudden the room starts spinning violently; it’s nothing but a whirling blur. You can’t tell up from down, left from right. You have the sensation that you are being pushed over and pulled toward the floor. You lose your balance fall. From your position on the floor, or bed if you were lucky enough to fall in that direction and not split your skull open on some piece of furniture on the way to the floor, you see the room whirling around you, jerking back and forth violently as it does, and you’re nauseated. Your world is completely out of control, a swirling blur to your eyes and you just want it to stop. This is perhaps the worst and most frightening feeling you’ve ever had. “Make it stop, please God make it stop!” you think to yourself. Luckily, in a minute it does…but only until you begin to move again. “What’s wrong with me? Is it an infection, a stroke, a brain tumor?” These are things that may cross your mind.
What you have just experienced is called vertigo. Something like 40% of people will experience vertigo at least once during their lifetime. One study published on the National Institutes of Health web site suggests that about 73% of BPPV cases affect those between the ages of 31-60 which of course makes up a large percentage of RVers. While it’s not painful it’s one of the worst feelings and most frightening experiences a person can have. I know. I just lived it.
It’s bad enough when this happens at home, but when you’re on the road in your RV where medical care may be more difficult to obtain, the surroundings and medical personnel unfamiliar, it presents an even more worrisome situation.
Since many RVers are likely to run into this problem I thought an article about it might be of some interest and importance by way of a providing framework to cope should the situation arise.
Disclaimer: I am not a medical professional. Apart from any external sources referenced the information presented in this article includes only my layman’s understanding based on my personal experience and should not be taken as medical advice or relied upon to diagnose or treat vertigo. If you have any symptoms about which I write or if you think you have vertigo please consult a qualified medical professional.
If you read nothing else of this article the bullet points immediately below include many of the main takeaways I want you to know:
- 40% of people will have vertigo at least once
- This article addresses only the most common cause of vertigo which is BPPV
- BPPV is more common in women
- BPPV itself is not a serious condition, but obviously if you fall because of vertigo or dizziness that may cause serious injury
- BPPV can often be diagnosed, treated and cured in one office visit without any medication or invasive procedures
- With the aid of video and a clinician BPPV can sometimes be diagnosed remotely and cured at home in less than an hour
- Untreated, BPPV may last or come and go for weeks or months
- Diagnosing the variant of BPPV and choosing the correct treatment may require a skilled clinician
- If you have vertigo that lasts less than a minute, is brought on by standing up or lying down, bending forward at the waist, raising or lowering your head, turning your head from one side to another while lying down, and if your eyes jerk back and forth repeatedly while you are experiencing vertigo you almost certainly have BPPV
BPPV: BENIGN PAROXYSMAL POSITIONAL VERTIGO
What is that? Let’s break it down: benign means the cause is not serious; paroxysmal (pronounced something like parox-is-mull) means that it comes on quickly; positional in this case means related to the position of the head, and vertigo, of course, is the sense of spinning, or dizziness.
For most of July and August I was in a battle with vertigo. It is my hope that by recounting my experience it may serve to help others so afflicted limit the duration of their battle with vertigo to a much, much shorter period of time as mine would have been had I known in early July what I knew by the end of August. I would also hope to offer some reassurance that while vertigo may be caused by many things including serious conditions such as a stroke, and despite the severity and frightening nature of the symptoms, according to the Mayo Clinic the most common cause of vertigo does not represent a serious problem and the cure is often quick and painless.
I’m fine now, by the way, no need to worry. I’m cured, as much as there is a cure, but there’s no guarantee it won’t happen again. If it does I’ll be more prepared and much less concerned.
From the National Institutes of Health: “The main symptom of BPPV is vertigo (spinning sensation) induced by a change in head position with respect to gravity. Patients typically develop vertigo when getting out of bed, rolling over in bed, tilting their head back, for example to look up shelves, or bending forward, for example when fastening their shoes.” [If you have vertigo brought on by those movements and it lasts less than a minute you almost certainly have BPPV.] “However, the symptoms of BPPV may vary among patients, and may manifest with nonspecific dizziness, postural instability, lightheadedness, and nausea. The vertigo in BPPV is typically intermittent and positioning dependent. Patients with BPPV do not experience severe vertigo during usual daytime activities performed with an upright posture, but rather when they get out of bed.”
CAUSES OF BPPV
Sometimes BPPV is suspected to result from a bump on the noggin. It may be related to infections, age, migraines or other things, but often the cause is idiopathic: not known.
BPPV is not a disease, per se, in that it is not known to involve a pathogen such as a virus or bacteria. I think of it as more of a condition, and it’s very often quickly and easily curable once the kind of BPPV has been properly diagnosed. Yes, there are different variations of BPPV, but they all have one thing in common: part of the inner ear contains little grains or crystals of calcium carbonate which is similar in composition to limestone. Yes, you actually have tiny little “rocks in your head”. I’ve heard them called octonia. You may also hear the term otoliths. Octonia average about 10 microns in size which is too small to see with the naked eye. In BPPV some of these octonia break free from where they are supposed to be and get into one or more of the three semicircular canals of the inner ear where they don’t belong. The semicircular canals are part of the balance mechanism and when these crystals get into them it mucks things up when you move in certain ways and can cause vertigo and jerky eye movements called nystagmus. When you stop moving and the crystals settle the vertigo and nystagmus stop, until you move again in such a way so as to shake up the crystals. Short-lived spells of vertigo, less than a minute in duration, is a hallmark of BPPV.
My recent battle with BPPV lasted about two months where it seemed to go away, mostly, and come back again which it did a few times. I’ve read that this coming-and-going is not unusual. There were times I felt mostly well during this two month period but even when I did I still had this sense of being a little bit off. The best way I’ve found of describing this feeling is that I felt as if I was just a little bit stoned and on the verge of feeling perhaps just a little bit nauseated. It was a subtle sensation, but I just wasn’t quite right. Most of the time I was able to function pretty much normally, and during those periods where I experienced vertigo it was brief, which again is a characteristic of BPPV. Thankfully, the vertigo was not often as bad as that which I described at the beginning of this article.
DIAGNOSING & TREATING BPPV
In diagnosing BPPV a clinician will often have a patient undertake certain movements such as lying down and turning the head one way or the other. As odd as it may seem these movements are designed to provoke the symptoms. When certain movements provoke vertigo and nystagmus (more about nystagmus below), a diagnosis can be made and a treatment prescribed. It is often the case that a simple treatment consisting of movements not unlike those used in the diagnosis can be undertaken on the spot and cure the problem right then and there.
One of the symptoms a clinician will be looking for is called nystagmus which is a repetitive, uncontrolled movement of the eyes. (Nystagmus and vertigo may also be caused by conditions unrelated to BPPV.) People can sometimes sense nystagmus as the world seems to jerk back and forth in front of their eyes. By observing the characteristics of the nystagmus–whether it is horizontal or vertical, pulses upward or downward, if there is a rotational component or not, if it is stronger with the head turned one way or the other, etc.–a clinician can determine which semicircular canal is involved, and in which ear. The clinician may also be able to determine if the octonia crystals are free floating or stuck somewhere.
Our eyes can move in any direction but during nystagmus associated with BPPV, from what I gather, the movement will either be mostly vertical or horizontal depending on which semicircular canal is involved. There may be more than one canal involved which can complicate matters, but I think that’s less common. There can also be a torsional (rotational or twisting) component to the nystagmus. Plus the nystagmus will usually beat or pulse more strongly in one direction than the other, moving with more speed in one direction and slower in the other. All of these things are clues a clinician uses in order to diagnose into which semicircular canal the octonia have found their way, if they appear to be floating freely or stuck, and therefore which maneuvers are needed to treat the patient. A fine point not frequently discussed is that the directional aspects of the nystagmus visible to the clinician may change based upon where the patient is looking during testing. I’m guessing that it may be best for the patient to look straight ahead during testing but I have not heard this discussed. As you can see there are a number of things to understand in order to accurately interpret nystagmus. Analyzing the nystagmus is key to diagnosing which form of BPPV a patient has and is best left to a clinician well versed in BPPV.
Along the road to diagnosing my BPPV my PT referred me to a video that pertains to the Dix-Hallpike maneuver. This maneuver, named after its creators M. R. Dix and C. S. Hallpike, is generally used to provoke vertigo and nystagmus associated with BPPV that involves one of the posterior semicircular canals. The Dix-Hallpike maneuver also makes up the first portion of Epley maneuver. The video (immediately below) also shows how to perform the Epley maneuver for treating posterior canal BPPV. The Epley maneuver is one of numerous Canalith Repositioning Procedures (CRP) designed to move the offending debris out of the semicircular canals.
Although the Dix-Hallpike maneuver is usually presented in regard to diagnosing posterior canal BPPV it may also reveal BPPV involving a horizontal (lateral) semicircular canal, as it did in my case. The Epley maneuver is not used to treat horizontal canal BPPV. A different test, the supine roll test, is geared toward diagnosing horizontal canal BPPV and a video about that and a treatment maneuver for horizontal canal BPPV is immediately below. There may be several different maneuvers designed to treat a particular variant of BPPV. For example, my PT prescribed a maneuver not shown in this video. As if things weren’t already complicated enough I should add that there are different kinds of horizontal canal BPPV. I mention this only to emphasize the importance of having a trained clinician make the diagnosis.
You may be able to perform the Dix-Hallpike and supine roll tests yourself or with someone’s assistance and have a clinician diagnose your condition remotely based on video of your eyes. Once understood, the Dix-Hallpike and Epley maneuvers and the supine roll test are easy enough to perform. That was how things eventually unfolded for me. Even after a video appointment and in-person visit with my PT I remained undiagnosed because nystagmus didn’t present clearly–my symptoms were too mild. It was only later while at home, because of a video Diane and I made of my nystagmus that I was eventually diagnosed. Since the treatment in my case was pretty simple and straight forward I self-treated at home following my PT’s instructions and that worked just fine, but, I needed the expertise of my clinician to diagnose my condition and provide the prescription.
VIDEO AS A DIAGNOSTIC AID
Using video for diagnosis by a remote clinician is a key takeaway I want you to have. It may be possible to perform BPPV testing during a live video conference with a clinician using a cell phone or tablet, or as in my case, have somebody, possibly even yourself, make a video of your eyes while performing the Dix-Hallpike or supine roll test. Since I had the software and the knowledge with which to do so I edited the video to include zoomed-in slow motion of my eyes, first for the left side Dix-Hallpike test and then for the right side. I uploaded the video to YouTube and set the YouTube controls so that only people to whom I provided the link could see it. In the video I described clearly which way my head was turned, and how I felt during the Dix-Hallpike tests. It was with this video my PT was finally able to diagnose my BPPV and prescribe the treatment that cured me in a few minutes.
TREATMENT & SELF-TREATMENT
When I was experiencing BPPV I just wanted to feel better and looked around for medication only to learn there really isn’t any. My GP said I could try something for motion sickness like meclizine to ease the sense of nausea but as to the vertigo he offered nothing. Meclizine is available over-the-counter and is not expensive.
Once the diagnosis was made–more on how that unfolded, below–my PT prescribed some simple maneuvers (movements) for me to do that cured me in just a few minutes. They were quick and easy and involved lying on my bed in 3 positions for two minutes each. Once I had done that I was cured. Pow, bam, cured, on the spot in 6 minutes simply by lying on my bed in a few different positions. Now that may sound amazing, and it is, but it’s not at all uncommon.
By way of understanding what’s going on during the treatment of BPPV, if you’ve ever played a handheld game where you have to roll a little ball through a maze then you will understand what the treatment of the most common forms of BPPV is like. It’s a matter of positioning the head in a series of movements that causes the loose calcium crystals to move within the semicircular canals from where they are causing BPPV to where they will not. That only takes a few minutes and once it’s done it’s often the case that the BPPV is cured. Sometimes it needs to be repeated. Other treatments for BPPV where the calcium crystals appear to be stuck rather than free-floating may involve more vigorous movements in order to shake them free.
MY LONG ROAD TO DIAGNOSIS
The reason that my BPPV dragged on for two months was due to the fact it took so long to diagnose, not because diagnosing BPPV is inherently difficult, but rather because I was unable to get myself in front of a clinician who could make the diagnosis at the same time I was exhibiting symptoms, the nystagmus. This is why I made the point above about using video as a diagnostic aid. I can see how it might have been possible for me to create a video the first day I had symptoms, get that video to a clinician, self-treat and have been cured the same day, but I didn’t have enough pieces of the puzzle at that time in order to make that happen. I am writing this article so that you will.
At one point along my road to diagnosis my doctor said “you could watch a video of how to do the Epley maneuver on YouTube”. That was bad advice for several reasons. First, because the Epley maneuver is for treatment of posterior canal BPPV which as it turned out was not the variant I had. Next, because no diagnosis had even been made that I had posterior canal BPPV, or for which ear, or even that I had BPPV. Finally, because, there are more bad videos than good about all this on YouTube and if a doctor refers you to look at a video he/she should provide a link to one that’s known to be good, not send you off on a wild goose chase where you might act on bad advice and wind up complicating matters.
Also along my road to diagnosis my doctor referred me to a physical therapist (PT) trained in dealing with BPPV. I don’t think my doctor has in-depth training on the subject and you wouldn’t necessarily expect that a GP would. So, be aware of that. Ask whomever is evaluating you if they are highly knowledgeable and skilled treating BPPV or if their knowledge is more superficial. Make sure you’re getting good advice.
Because of the Covid-19 pandemic my PT scheduled a video appointment with me rather than an office visit. Unfortunately this did not lead to a diagnosis or treatment. The PT could not tell, based on my verbal descriptions of my symptoms and movements she asked me to try, which kind of BPPV I had or even if I had BPPV. Part of this may have been due to symptoms that seemed to come and go; part because of my lack of ability to adequately assess and describe my symptoms, and yes, partly because it was a video appointment instead of an office visit. IMHO, an in person appointment might have been more appropriate and more productive..might have been. Pay attention when you have symptoms, what movements bring them on, if one movement produces vertigo of more severity than another, how long vertigo lasts, etc. Anything and everything you can notice may help. Write it all down.
Over the next number of weeks I had symptoms that got better and worse a few times. Finally, I felt well enough, long enough, that I thought I was done with the vertigo so Diane and I took a trip in the RV. Of course, wouldn’t you know it, I had a recurrence while we were away. There we were in a campsite that we had to vacate by a date certain with me not feeling well enough that I was confident to drive. This made for a messy situation where the camp hosts were trying to work with the Forest Service so we could extend our stay in the hopes I would feel better with time. The Forest Service had to alter their stay limit for the campground on Recreation.gov so that I could extend my reservation but when they tried it didn’t work. Long story short, we eventually were able to reserve the same campsite we were already in for a few more days but we wound up leaving early once I felt well enough in order to get home before I might relapse again and in order to be near familiar medical help.
After arriving home I had an in-person appointment with my PT but even then my symptoms, my vertigo and more importantly my nystagmus were muted and did not lead to a conclusive diagnosis. My PT threw up her hands and referred me back to my MD, but I had other ideas.
I had done some reading and was almost positive that I had BPPV. I had read about the movements that bring on vertigo associated with BPPV. All of them brought on vertigo in my case. I’d also learned that vertigo in somebody with BPPV lasts maybe 30 to 60 seconds after one of those movements and that this is particular to BPPV and not vertigo caused by other things. Finally, nystagmus is consistent with vertigo caused by BPPV. Having read about these symptoms that were consistent with BPPV but didn’t seem consistent with vertigo caused by other things I felt fairly confident that I had BPPV. If it walks like a duck…
Believing that I had BPPV I performed the Dix-Hallpike maneuver at home while Diane used my iPad to make a video of my eyes to record any visible nystagmus. Fortunately, when we made the video nystagmus was very clearly present. I used my video editing skills to edit the video to include zoomed-in, slow motion clips showing the movement of my eyes.
The Dix-Hallpike test is used to check for BPPV involving the posterior canal. I tested for left ear involvement and then for right ear involvement. For the left side there was a little nystagmus and a little vertigo, but for the right side both were very noticeable. My PT could tell by the nystagmus that I had right side, horizontal canal, geotropic BPPV. She could tell this even though the Dix-Hallpike is used to check for posterior and not horizontal canal involvement. She knew how to read the movement of my eyes during the nystagmus in order to make her diagnosis.
By way of treatment she told me to lie on my right side for two minutes with a pillow to keep my head level, roll 180º left to my left side and stay there for two minutes, then roll to the left another 90º so I was face down for another two minutes. I did and when I was done my vertigo was gone! It may seem obvious but I will say it anyway–this treatment was prescribed for my particular condition by a trained clinician and you cannot assume it will be correct for you.
Getting to the diagnosis in my case was the hard part–it took almost two months. Once diagnosed the treatment took barely more than two minutes and I was better. It is my hope that by pointing out the symptoms of BPPV and how I got a clinician to be able to witness them, that should you find yourself in a similar situation your road to recovery will be closer to two days than two months.
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