I want to share with you the results of a study that was published by researchers in coordination with the Vestibular Disorders Association.
This study is the analysis of a survey completed by 521 participants that were recruited through a mailing list, social media, and flyers. What is interesting was the number of people who were frustrated by vertigo!
Are You Feeling Frustrated by Vertigo?
The purpose of this study was to describe the experience of participants with dizziness while they were navigating the healthcare system.
Hint: It turns out that there is good reason to feel frustrated by vertigo care.
The survey found that more than 40% of participants had sought out care for their dizziness within the first week. Most of the participants had sought out care for their dizziness within one month of onset, whether that was with an emergency room, an urgent-care, or at a primary care office.
However, more than 50% of participants in the survey reported 5 months or longer to receive a diagnosis (something I would not want to wait for if I was frustrated by vertigo). Only 20% of participants thought that their diagnosis was accurate and timely. 17% were told that their dizziness would go away. 18% felt that they were misdiagnosed
I would propose this is because our healthcare system is very compartmentalized. A lot of times providers are looking at a case through the lens of the specialty that they have, instead of looking at the whole patient and considering all of the possible causes of the symptoms.
This led 1 out of 3 participants to report being frustrated by vertigo due to being misdiagnosed or misinformed.
People with dizziness see an average of 3 to 4 different providers for treatment of dizziness.
My goal today is to let you know that you are not alone, if you are feeling lost, frustrated, or confused about what steps to take to resolve dizziness.
That is why I started my specialty practice for people who suffer from dizziness, vertigo, imbalance, or repeated falls.
Disclaimer
This blog is provided for informational purposes only. The content and any comments by Dr. Kim Bell, DPT are not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. The details of any case mentioned in this post represent a typical patient that Dr. Bell might see and do not describe the circumstances of a specific individual.
I have been diagnosed with vestibulopathy with eyes dominant, vestibular migraine, and BPPV. The first Dr treated me with clonazepam, which worked for six years then stopped working. Since that dr. retired, I have seen two other drs. I have had several types of P T and am now on ventafaxine 100 bid. This works but not as well as before. None of the drs agree with the other diagnoses and neither are interested in looking for another cause. Suggestions
Hi Iris,
I am sorry to hear what you are going through! Although frustrating, it is not uncommon.
My suggestion is that you start a file to keep a summary of the findings and results from each consult. Keep a report from each diagnostic test that you have and share them with every provider.
I explain more about “Navigating the Healthcare System as a Dizzy Patient” in my webinar presentation through Virtual Vestibular Conference 2020. You can purchase the bundle of all the webinars for $20 at Vestibular.org, if you follow the links to “Balance Awareness Week.”
Keep advocating for yourself!
Best wishes,
Kim Bell, DPT
Hi Dr. Bell,
I’m 51. I’ve had BPPV for 25 years, usually going several years in between episodes. I’ve gone to ENTs and PTs for the Epley maneuver, and had limited success, but the episodes always went away within a week or so either way. Episodes have gotten more frequent the last year, and I’m now in the midst of one since November 3rd. I’m working with a fantastic doctor in Houston who worked on me twice a week for three weeks (Epley and Semont) and finally fixed me. I had 5 fantastic weeks! (I deep cleaned my house!) But it’s now back. I went back to my doctor today, who eventually got a negative response on the Hallpike, but I don’t think it’s completely gone. She says she thinks I just have recurrent BPPV. Another doctor suggested I may have PPPD. I’m wondering if you have any opinion on either recurrent BPPV (and if so, why does it keep happening?) or PPPD. I’ve read all of your blogs and plan to start trying some of the things you’ve suggested (water, sleep, meditation, cleaner diet, etc.)
Also, thank you for your blogs. I’m not sure you know how helpful it is to have someone who completely understands what you’re going through!
Hi Robin,
Yay for deep cleaning your house! That is wonderful you had five fantastic weeks and worth celebrating.
I am so happy that you have found my blogs to be beneficial to you.
I have personally been dealing with recurrent episodes of BPPV for many years myself, so I know how frustrating it is and I can empathize.
You may enjoy this quote from Charles Bukowski that I say to myself because it always makes me smile, when I wake up with BPPV again:
“Sometimes you climb out of bed in the morning and you think, I’m not going to make it, but you laugh inside — remembering all the times you’ve felt that way.”
PPPD
Regarding PPPD, the diagnostic test that can either confirm or rule out that diagnosis is a Functional MRI or fMRI. It will show if you have faulty connections in your brain while processing information.
Without a functional MRI, the diagnosis of PPPD is more of an educated guess.
Sometimes PPPD will resolve on its own within a few months.
People with PPPD benefit from a full course of Vestibular PT with medication such as Effexor and mental health therapy all running concurrently. The mental health therapy that has been shown to help with PPPD is either Cognitive-Behavioral Therapy or Acceptance and Commitment Therapy.
BPPV
Having recurrent, or refractory, BPPV is definitely possible. I see people with problem this frequently.
Some information that may be helpful for you to learn about include Symptomatic BPPV, which I discuss in this article and this article.
In the case of Symptomatic BPPV, even if you don’t have eye movement, the BPPV treatments may still help if you experience symptoms that are “positionally triggered” by the BPPV testing. This does not fit the textbook definition of BPPV, so many providers are not aware of this possibility.
BPPV commonly recurs in people with migraines, Meniere’s, history of ear infections or recurrent swimmers ear, diabetes, high blood pressure, high cholesterol, tobacco smoking, and low Vitamin D. I discuss the conditions and diagnoses that are commonly associated with BPPV in the bottom section of this blog.
Anything that affects the blood flow, or circulation, in your ears can cause recurrent BPPV.
Supplementing Vitamin D in people who have a Vitamin D level below 30 (on a lab test) is the only way we know to possibly reduce the frequency of BPPV recurrence.
Dehydration and stress can also trigger a new onset of BPPV. Making sure you stay hydrated and managing your stress are also modifiable risk factors for BPPV.
Ototoxic medications can also affect your ears. You can check all your current medications for side effects of “ototoxicity,” and discuss any concerns with your doctors.
Normal aging also contributes to higher rates of BPPV in people over 50! Too bad you can’t modify that risk factor!
The most important thing is to recognize a recurrence of BPPV as soon as possible, then get it assessed and treated to resolve it once again.
The sooner you recognize that it’s back and get it successfully resolved, the sooner you can carry on with your life.
I hope that information was helpful.
I wish you well on your journey!
Sincerely,
Dr. Kim Bell, DPT
Hi Dr. Bell—I seem to get bppv at 5 yr intervals. I am in my 3rd episode now, about 10 yrs after my first. I tolerated and benefited from the epley last time but this time the spinning it brings in is too intense and I can’t get through it. Same with the half somersault maneuver. I can avoid most dizziness by restraining my head movements but it’s not going g away and it messes with my sleep. Any tips about how to get through the maneuver?
Thanks so much for your dedication and sharing your expertise!
Hi Jss,
When my patients cannot tolerate the BPPV treatment maneuvers because their vertigo is too severe, I usually schedule them to be my last patient for the day. That is because the BPPV intensity is usually worse in the morning, and is typically reduced as the day goes on (unless you are moving your head around alot all day which may cause it to get worse as the day goes on).
So I suggest that you get your BPPV treatments done as late in the day as possible, maybe even after dinner and about an hour before bed.
Also, you may need to premedicate with a prescription medication that your doctor can suggest if you explain the problem to your doctor. Medication can help you tolerate the maneuver.
This blog has more home remedies for vertigo that may help.
I hope that helps!
Best wishes,
Kim Bell, DPT