Benign Paroxysmal Positional Vertigo

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Benign Paroxysmal Positional Vertigo
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    Community Voices
    Rebecca RH

    Lessons I Learned From Vertigo and Chronic Illness

    A bit of background before going into the story of my intense bout of benign paroxysmal positional vertigo (BPPV): I have fibromyalgia, myalgic encephalitis/chronic fatigue syndrome (ME/CFS), irritable bowel syndrome (IBS) and borderline personality disorder (BPD). I generally manage my chronic illnesses and mental health quite well — with the usual ups and downs, of course. Having vertigo on top of these conditions reminded me of a few important things. The other week, I woke up on a Friday feeling a bit dizzy, but this is pretty typical for me, so I didn’t think much of it and went to work as usual. I really struggled during the day, but I pushed through. When I got home, I went straight to bed because I felt like the world was spinning intensely. Any time I closed my eyes, the spinning feeling got worse. I managed to eat some dinner but couldn’t sleep due to my nausea and dizziness. The dizziness and nausea intensified to the point that I felt sick a lot over the next two days. The whole next week was a bit of a blur, but I know I could barely keep my eyes open, move my head, or stay upright. The nausea was so intense that it was difficult to eat or drink. I couldn’t even distract myself with social media because I couldn’t even look at my phone either. I had to ask my partner to cancel prior commitments and also call in sick to work for me as I couldn’t be on my phone at all to send messages or make phone calls. That week, I spent a lot of time in bed sleeping and listening to audiobooks. By day five with no improvement, I went to see the doctor, who diagnosed me with BPPV. Why they use the word “benign” in the name I have no idea because nothing about it feels “benign.” My doctor got me to do the Epley maneuver and sent me home with some medication, saying that for 95 percent of people, this type of vertigo clears within two weeks. Of course, my catastrophizing brain went, “But what if I’m part of the 5 percent for whom it doesn’t clear up quickly?” I was already getting stuck in anxious, catastrophizing thoughts linked to the last time I had had an intense unknown viral illness in 2013 that preceded me developing ME/CFS and also triggered a whole cascade of additional challenges. I was worried this was a similar situation, and I would be back to square one. What if the vertigo didn’t go away? What if I went back to not being able to work? I slowly started to be able to spend short periods of time sitting upright, was able to eat proper food again, and could spend short amounts of time on a screen to send urgent emails. By the following week, I returned to work with reduced hours. Now two weeks after the initial onset, I am still a bit unsteady on my feet, the world still lurches if I move my head too quickly, and everything feels a little unreal, but I am able to mostly do my daily tasks again. I have noticed that my energy capacity has reduced considerably, though. As I think back over this period, I realize I have many important reflections, reminders and lessons from my experience with vertigo: 1. Communicating clearly about my vertigo-related limits and needs is important. My vertigo has been a good reminder to ask directly for what I need, like time off work during the acute phase. I also asked for reduced hours when going back to work, reduced tasks and expectations at home, and support with daily tasks, and communicating these needs went well and reminded me that it is good to ask for help. 2. There is a real difference in perception between acute and chronic illnesses. It has been really interesting to have such an affirming, supportive response from my workplace and family about needing time off and reducing tasks due to my vertigo. This stands out even more because it is so different from the response when I make the same requests due to my ME/CFS or my fibromyalgia. People now accept that I am unwell and need time to recover without a need for justification, and that has been lovely, but it also makes me sad that this can’t also be the case for people with other chronic illness and mental health conditions. 3. Going back to basics with pacing my life helped me during my vertigo bout. As the world slowly got less “spinny,” and I was able to do a few more tasks, I was surprised by how low my energy capacity had become. I’ve had to consciously pace out my days, but taking life more slowly has helped me manage my vertigo. 4. Listening to my body and respecting the need to rest helped me cope with my vertigo symptoms. It almost felt easier when things were so hard that all I could do was lie in bed and listen to an audiobook. Then when I started to be able to get up and do a few things, of course I wanted to do more than was possible for me at the moment. Living with vertigo has been a good reminder to really tune back into my body and respect my need to rest and heal. This is something I am constantly working on in my chronic illness self-management. I really struggle with allowing myself rest a lot of the time, but my vertigo has helped me practice taking a rest. 5. Catastrophizing did not help me cope with my vertigo. Getting stuck in my head and catastrophizing the situation was not useful and made me feel worse. I kept shifting in and out of radical acceptance around what was happening in the moment as my future-focused brain kept feeding me “what if” scenarios I didn’t want to think about. Thinking about the past consequences of my last intense acute illness just brought back grief, loss, and trauma. When I was able to stay focused in the present and take each day one at a time, my symptoms were much more manageable, but this was — and still is — an ongoing process. 6. Pushing through was not the way to handle my vertigo. On the first day of my vertigo bout, I wasn’t feeling ill enough in the morning to call in sick to work, but as the day progressed and things got harder, I realized I definitely did not need to complete my full shift. In hindsight, I know I should have gone home early. In the recovery process, I have also been struggling with feeling like a burden and like I need to do more, but in reality, I am still recovering, and pushing through my vertigo will delay the recovery process. My vertigo was a full-on illness that I hope does not repeat itself, but it was also a good reminder about going back to some basic strategies of self-care, pacing, self-compassion, and asking for support.

    Community Voices
    Community Voices
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    Community Voices

    World gone topsy-turvy: How many here struggling with vertigo (BPPV)?

    <p>World gone topsy-turvy: How many here struggling with vertigo (BPPV)?</p>
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    Community Voices


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    Community Voices

    What things help vertigo? #BenignParoxysmalPositionalVertigo #Vertigo

    My dearest friend struggles with Vertigo. She does exercises that her doctor recommended to help. But sometimes it’s not enough. I have seen quite a few posts asking what products people like for pain management. I’m wondering for people who struggle with vertigo, what products have helped you manage your vertigo? I would like to put together a little gift pack for my friend. Thank you for taking the time to share!!

    10 people are talking about this
    Community Voices
    Daniel Pancy

    Vestibular Disorders Are Invisible Disabilities

    According to VeDA, vestibular disorders consist of the following disorders and syndromes. “The most commonly diagnosed vestibular disorders include benign paroxysmal positional vertigo (BPPV), labyrinthitis or vestibular neuritis, Ménière’s disease, and secondary endolymphatic hydrops. Vestibular disorders also include superior semicircular canal dehiscence, acoustic neuroma, perilymph fistula, ototoxicity, enlarged vestibular aqueduct, migraine-associated vertigo and mal de débarquement. Other problems related to vestibular dysfunction include complications from aging, autoimmune disorders and allergies.” Invisible disabilities have been defined as follows: “In simple terms, an invisible disability is a physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities. Unfortunately, the very fact that these symptoms are invisible can lead to misunderstandings, false perceptions and judgments.The term we define as invisible disability refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations, and vary from person to person.” To look at me, a person with bilateral Meniere’s disease, benign paroxysmal positional vertigo and vestibular migraines, you would not notice that I am disabled. The vestibular disorders I have come with their own set of uniquely different issues, with some crossover as to be expected with any medical conditions. However, Meniere’s disease has a major difference. There is no cure. Doctors can treat the symptoms. Doctors can perform procedures to alleviate and/or lessen the main and most problematic symptom, vertigo. It can be accomplished by chemically destroying the vestibular nerve through the use of strong antibiotics such as gentamycin directly into the inner ear. Vestibular nerve section is surgery for those that have some or most of their hearing left in the affected ear. It involves cutting the vestibular nerve. This will only stop the vertigo. Endolymphatic sac surgery is a procedure on the endolymphatic sac of the inner ear. A small amount of bone is removed from around the endolymphatic sac, resulting in a change of the pressure of the fluid in the sac. Sometimes a shunt is placed to help release the excess fluid buildup inside the endolymphatic sac. All these procedures and others will help to eliminate vertigo but not the rest of the symptoms of Meniere’s, including hearing loss, tinnitus (ringing in the ears), aural fullness (feeling the ear is full or plugged), loss of balance, headaches, nausea, vomiting, sweating and diarrhea. Medication, diet, chiropractic maneuvers and vestibular rehabilitation may help to reduce some symptoms, but do not cure Meniere’s. So what makes Meniere’s disease along with other vestibular disorders part of having an invisible disability? Vestibular refers to the workings of the inner ear, particularly those that are responsible for balance. It’s invisible because you cannot see inside the vestibular system from the outside. During a vestibular attack, you cannot see a person having vertigo. You only see the outside effects of vertigo. The vomiting. The confusion and fear on a person’s face during an attack. The lack of mobility. The same is true with tinnitus. You cannot hear the high pitch squeal, the jet engine roaring, the white noise static. Even when a person with vestibular issues is not having an attack, the issues are still present, usually without any visible outward signs, unless you take the time to learn them. According to VeDA, a person may experience a variety of issues such as: • Spinning or whirling sensation; a feeling the person or world moving when it is not (vertigo)• Symptoms can be present while sitting still, in specific positions, or with movement• Lightheaded, floating, or rocking sensation (dizziness)• Sensation of being heavily weighted or pulled in one direction• Imbalance, stumbling, difficulty walking straight or when turning• Clumsiness or difficulty with coordination• Difficulty maintaining straight posture; head may be tilted to the side• Tendency to look downward to confirm the location of the ground• Tendency to touch or hold onto something when standing, or to touch or hold the head while seated• Sensitivity to changes in walking surfaces or footwear• Difficulty walking in the dark• Muscle and joint pain (due to difficulty balancing)• Trouble focusing or tracking objects with the eyes; objects or words on a page seem to jump, bounce, float, or blur or may appear doubled• Discomfort from busy visual environments such as traffic, crowds, stores, and patterns• Sensitivity to light, glare, and moving or flickering lights; fluorescent lights may be especially troublesome• Tendency to focus on nearby objects; increased discomfort when focusing at a distance• Increased night blindness; difficulty walking in the dark• Poor depth perception• Sensitivity to loud noises or environments• Sudden loud sounds may increase symptoms of vertigo, dizziness, or imbalance• Difficulty concentrating and paying attention; easily distracted• Forgetfulness and short-term memory lapses• Confusion, disorientation, difficulty comprehending directions or instructions• Difficulty understanding conversations, especially when there is background noise or movement• Mental and/or physical fatigue out of proportion to the activity• Loss of self-reliance, self-confidence, self-esteem• Anxiety, panic, social isolation• Depression• Slurred speech I have been verbally abused when using my disability parking tag. It didn’t matter that I was using my walker. I was screamed at by a woman who said I didn’t need the walker or that spot because she just saw me put my walker in the back of my car. According to her if I could do that I was a fraud, a faker, a user of the system. Once while I was teaching, I showed up to work early and started having an attack in the hallway. I managed to get myself to the wall and “wall walk” my way down to my classroom. Another teacher saw me and called out, “Hey Pancy! It’s only 7 o’clock in the morning! You drunk again?” He headed to the principal’s office to report me. Prior to this, I had informed my principal of my condition, the symptoms involved and pertinent medical information. Within minutes my principal and the teacher were both in my room. The teacher apologized. My principal brought me my rescue medicine and once I was stabilized, another teacher drove me home and helped me get situated. All this before 8 a.m. So are vestibular disorders considered an invisible disability? The answer is yes.