I received an email a couple of weeks ago from Deanne asking questions about Vestibular Neuritis (VN) and associated chronic symptoms. With her permission, because her questions are both relevant and typical of many patients with VN, I am responding through this blog in a Q and A format. Deanne’s questions in Italics. My responses in bold. Links to relevant articles.
I happened upon a blog you wrote which was very helpful to me. It inspired me to reach out to ask you if you would be able to answer a few questions I have about VN.
I appreciate you taking time to read my story and possibly share information to help me understand VN.
A few years ago, I experienced VN. The entire experience was awful. It has been the most devastating health issue to date for me.
There seemed to be little understanding and compassion from medical professionals as to my condition. But I was blessed to have an AMAZING physical therapist who diagnosed me and gave me therapy exercises to help me rehabilitate.
My two previous blogs explore the lack of appropriate testing and understanding of vestibular disorders in many acute care settings. It is actually rare to get an accurate diagnosis in the acute stage.
There are more and more physical therapists with an interest and training in vestibular disorders and rehabilitation. The American Physical Therapy Association (APTA) has a neurologic special interest group with a focus on vestibular rehabilitation. There are a number of programs available to physical therapists to receive more advanced training in vestibular disorders. I am glad you were able to connect with a therapist with advanced training.
After about 8 weeks post VN dx I considered myself nearly recovered. The few lingering movements that made me dizzy were movements I learned to just avoid doing or learned to deal with.
There is a misconception among many health care providers that VN is a temporary condition with eventual full recovery. The following quote is from “Up to Date”, an online subscription service available to providers using EPIC EMR: “Patients with vestibular neuritis generally suffer from severe vestibular symptoms for a few to several days, followed by a gradual diminution of symptoms and a return of equilibrium. Recovery may be improved with corticosteroid therapy.”
While some patients with VN may have full recovery, it is more typical to have some lingering measurable deficit even years after onset. A recently published study concludes: “Vestibular neuritis appears to be the result of post-viral neuroinflammation of the vestibular nerve. However, long-term prognosis is not dependent on the magnitude of the peripheral residual damage (as measured with caloric and video head-impulse test). Instead, a combination of visuo-vestibular psychophysical factors (visual dependence), psychological traits and dysfunctional vestibular perception are relevant.
Several years have passed and I have noticed a few things. This week I went to Cedar Point- an amusement park. I did not ride any roller coasters etc… but to my surprise my vertigo was triggered simply by watching as a theme park train rode slowly by while I waited in line to ride it. All of a sudden I felt dizzy, nauseated….simply from watching it go by. Why would that happen?
The debilitating dizziness and nausea subsided after about 10 min but now 5 days later I’m still experiencing slight dizziness and nausea. It’s very mild but it’s there.
In general, based on survival instinct, the brain will use information that it deems most reliable for balance and orientation. In a healthy system, the vestibular input is typically most reliable as it consistently sends signals referencing movement, position, and gravity.
In contrast, visual and proprioceptive cues are always changing as we move through our environment. When there is a disorder of the vestibular system, the brain may choose to prioritize visual information. This is fine as long as the visual information is available and reliable. In some situations, such as you describe a train moving by, the visual information is giving you a full field view of movement. In this situation the brain has to quickly make a decision, based on vestibular information, as to whether you are moving or whether you are still, and your visual surroundings are moving. With compromised vestibular information, the brain can often become confused due to lack of reliable vestibular information.
- Symptoms elicited in persons with vestibular dysfunction while performing gaze movements in optic flow environments – PMC (nih.gov)
I also notice that every time I get a cold, I experience bouts of mild dizziness/nausea with it which goes away once I’m well. I can deal with it. But it does make me anxious.
Keep in mind that to compensate for vestibular weakness, the brain must work overtime. To do this as efficiently as possible, the brain needs to be functioning at peak efficiency. Anything that negatively impacts brain function (like illness, fatigue, CNS medications, alcohol), can cause a temporary decrease in the brains ability to manage the vestibular weakness.
If you suspect that you are dealing with an increase in symptoms due to decompensation, first, manage the trigger (i.e. get some rest, sober up, treat the cold, etc). Do not take meclizine to reduce the symptoms as that will just prolong decompensation.
Every time I get vertigo I’m so worried I’m going to experience the onset of VN again. It was such a rough 8 weeks to recuperate. I never want to deal with that level of it again!!
The good news is that recurrence of VN is quite rare, around 2%. It would be much more likely that a recurrence of vertigo would be the result of BPPV, which is typically easily treated.
- Vestibular neuritis: recurrence and incidence of secondary benign paroxysmal positional vertigo – PubMed (nih.gov)
- Low recurrence rate of vestibular neuritis: a long-term follow-up – PubMed (nih.gov)
Would you consider writing a book for those of us who struggle? Talking about the long-term effects. There are a lot of us out there with not a lot of information on VN.
My book writing days are likely over, but it would be a good project for a younger practitioner.
The hardest part of VN for me was the brain fog and fatigue. For weeks I felt exhausted and had a very hard time concentrating. I also felt so insecure about my imbalance (I’d veer off sideways like a drunkard!). My PT assured me this was all normal and my brain was putting all its effort into compensation. This made me cry with relief because I just did not feel like myself at all…for weeks! I was relieved to know it was part of the VN.
As noted above, the brain is working harder to compensate for the vestibular weakness. This can result in cognitive overload, which may present as fatigue, or reduced memory or concentration. This is more precisely described in a recent paper:
“the association between vestibular and cognitive dysfunction may relate to a reduction in cognitive resources available in the setting of vestibular loss. According to Kahneman’s Capacity Model of Attention, an individual has a set amount of attention and cognitive resources available to allocate to mental tasks. The increased instability in gaze and posture associated with vestibular loss may require that increased attentional resources be allocated by the brain to maintaining balance and orientation. This leads to decreased cognitive reserve available for other tasks, particularly those that require processing by similar cognitive networks. Finally, vestibular dysfunction has been associated with affective disorders such as anxiety and depression, which may in turn contribute to cognitive dysfunction.”
- Association Between Vestibular and Cognitive Function in U.S. Adults: Data From the National Health and Nutrition Examination Survey – PMC (nih.gov)
With you being a physician and having experienced it yourself, I think you may bring hope to others through your story. And a book may also help steer people in the right direction for treatment/rehab as well.
I am not a physician, but rather a Doctor of Audiology (AuD). I have experienced acute vestibular neuritis myself and continue, almost five years later, to experience mostly manageable consequences. Because I work in a teaching hospital, I probably have the most well-documented and certainly the most monitored case of vestibular neuritis on record.
I am the first hands-on patient most of my students test with the rotational chair and vHIT as these tests are typically abnormal and also change over time in patients with chronic unilateral vestibular hypofunction.
Some of my long-term symptoms are intermittent, and some are chronic. The most impactful is that I can no longer participate in sports like tennis as I have no visual stability while my head is in motion. If I can get to the ball, hold my head still for a fraction of a second, I can see it clearly. If I am on the run, I have to guess where the ball is and swing with more hope than accuracy.
I live on a lake and my wife and I used to alternate between paddleboarding and kayaking. I can no longer paddle board because I am very reliant on a solid support surface. This also shows up to a lesser degree when I am on a boat.
Sometimes I reach my cognitive limit. If I have had a hectic workday requiring a lot of concentration, I sometimes hit a wall and need a few minutes to “reboot.” If I can fall asleep even for a minute or two, it seems to reset my brain and my ability to concentrate is quickly restored.
I consider myself fortunate. In other stories I’ve read, many never fully recover. Some had to quit their jobs. VN is very challenging and I never heard one thing about it until I got diagnosed with it myself.
Thank you for reading my story.
Thank you, Deanne for your letter. I hope this information is helpful.