The Dizziness Group: For those who are floating, boating, falling or flying

[[La...]]

Hi Everyone,

I just came across another vestibular study that might be of interest to people around here. It's about a type of dizziness whose symptoms cross over with ours. The study is called "A Review of Neuroimaging Studies in Persistent Postural-Perceptual Dizziness (PPPD)", and I will post the abstract here so you can see what the recent info is saying.

 

I do have to say that a certain aspect of it gives me pause, and that's the use of the word "neuroticism" when discussing "personality traits". Assuming this study is translated from Korean (since it's a South Korean study), there may be a language issue here. What do they mean by that? Are they saying that "neurotic" people are more susceptible to this type of dizziness? It's not something that can be measured objectively, and whether people's personality traits should be included in vestibular studies seems to me to be questionable at this point.

 

 

https://pubmed.ncbi.nlm.nih.gov/33968271/

 

Abstract

 

Persistent postural-perceptual dizziness (PPPD) is a functional vestibular disease characterized by persistent dizziness, unsteadiness, and/or non-spinning vertigo, and is the most common vestibular syndrome in young adults. A stiffened postural control strategy, shift to reliance on visual over vestibular information, and hypervigilance to the environment have been suggested as possible pathophysiological mechanisms of PPPD. However, the exact mechanisms remain unclear. Recently, neuroimaging studies using magnetic resonance imaging and single photon emission computed tomography have provided pivotal insights into the pathophysiology of PPPD. The aim of this review was to evaluate and summarize the existing data on neuroimaging studies in PPPD. In summary, these studies fairly consistently reported decreased brain structure, function, and connectivity among the areas involved in multisensory vestibular processing and spatial cognition, and increased function and connectivity in the visual processing areas in patients with PPPD. The detected brain changes might reflect maladaptive and compensatory mechanisms including dysfunctional integration of multisensory vestibular information and visual dependence. Notably, various factors including personality traits (i.e., neuroticism), psychiatric comorbidities (i.e., anxiety and depression), and triggering factors (i.e., peripheral vestibular lesions) seem to modulate brain functional activity and connectivity patterns, possibly accounting for some differences across the results. Future studies should carefully control for these confounding effects in order to draw firm conclusions.

 

 

[[Ho...]]

Yes I heard about the driving thing. I’m not in a rush to drive. I just want to ride in the car without inducing a panic attack because it immediately revs up my symptoms. I start having back to back adrenal surges. Scary!!!! I’m just going to have to endure the 12-15 minute ride to my new apartment. I was wondering if this happened to you too? If so what was the consequences of you forcing yourself to keep riding in the car once you start going down the road? How do you help yourself in the car? What helped you cope?

 

LadyDen, Yes, I had issues even being in a car as a passenger for a while.  I would have intrusive thoughts that the worst possible thing could and would happen. Of course, it didn’t.  My heart rate would increase and I would become very anxious and panicky.  This has gotten better with time.  Probably due to my brain healing and the repeated reassurance after each safe trip that everything was going to be ok. As far as all the stimuli, I wore sunglasses and tried to just soften my gaze.  Think about something pleasant to you. Feel free to reward yourself after each successful trip! You made it and you can do it again! 😊

[[La...]]

Hopper thanks for the tips and encouragement. I’ll try that for sure. I know it will be uncomfortable but I have to do it. I just don’t want to end up in the Emergency room from a panic attack. I’m going to just try to not worry about it. I’ll keep you posted. My next window I’m going for it. Hugs to you. Hope you’re having a great day. Wishing you well!

[[Ho...]]

How long have you been off the Benzos LadyDen?

[[bo...]]

Hope its ok  to ask, I recently  smoked cannabis  4 days ago, very small puffs and feel more dizzy and unbalanced, vision is also  unfocused more than usual.    anyone went through this  :'( but also one my cycle so who knows.

 

I heard such good things so disappointed  wanted it for sleep.  Can never win

[[La...]]

How long have you been off the Benzos LadyDen?

I’ve been off Ambien for 13 months and 1 week

[[La...]]

Sorry Bonty I have never smoked weed/cannabis ever. I have no experience to help you. But there’s a thread on here that talks about it. I think it’s in other medicine thread.

[[Je...]]

Actually, tons of studies and articles on PPPD discuss at length issues like depression, anxiety and neuroticism, I've seen these come again and again when reading on these disorders these last weeks.

Neuroticism is measurable, it is one the five dimensions of personality in the "Big Five" psychological model.

[[La...]]

Actually, tons of studies and articles on PPPD discuss at length issues like depression, anxiety and neuroticism, I've seen these come again and again when reading on these disorders these last weeks.

Neuroticism is measurable, it is one the five dimensions of personality in the "Big Five" psychological model.

 

It's not measured objectively. That's what I mean. It's subjective.

 

When I was going through all my dizziness testing and investigation, I saw a neurologist who told me the following important things about the vestibular system:

1. The vestibular system is finely tuned and highly sensitive, and if it's off a little bit, one can feel dizzy.

2. We don't have the means to test it to the degree that we would like at the present time.

 

So, if we have testing that isn't accurate and/or complete, will doctors blame dizziness on a patient's psychological traits?  Why not focus on improving the testing? Why not just say the following?: "We're not sure yet because there are things we don't yet understand about the vestibular system." Anxiety and depression are common in those who are dizzy BECAUSE they are dizzy. Dizziness is unnerving and unnatural and uncomfortable. Did they measure the people's "neuroticism" before they became dizzy, or only after?

 

Personally, I'm looking for objective, measurable markers. For example, the study I'm currently reading is looking at hormonal levels (measured in serum) in women with vestibular migraine. I've come across a number of studies in the past two years --including a number of the studies on Mal de Debarquement Syndrome -- that are exploring or mentioning this connection (i.e. between hormones and dizziness), and it's of great interest to me. More women than men experience this type of dizziness, and studying a possible hormonal connection is logical. MdDS mostly affects women in a certain age and stage of life (perimenopause/menopause), a time when hormones fluctuate wildly and drop off. This can go on for years.

 

I'd also like to see more exploration of the roles of the various neurotransmitters in the vestibular system and how the psychiatric medications affect them. Dizziness is listed as a possible and common side effect with many of them, including benzodiazepines and antidepressants. This is true both during use and during the withdrawal and post-withdrawal periods.

[[La...]]

Lapis or anyone else… do you have trouble riding in the car? My sensory system gets overstimulated in the car. It magnifies my boatiness and pulling and causes adrenal surges. I then panic! This is fairly new symptom since I had my setback. It’s called amaxophobia I think. My vestibular system is in overload in the car. What do you think will happen if I just force myself to ride in the car anyway? Last time I nearly fainted. I need to try again by tomorrow. I’m not afraid of the car itself. I’m scared of what may happen if I force myself to proceed.

[[La...]]

Lapis or anyone else… do you have trouble riding in the car? My sensory system gets overstimulated in the car. It magnifies my boatiness and pulling and causes adrenal surges. I then panic! This is fairly new symptom since I had my setback. It’s called amaxophobia I think. My vestibular system is in overload in the car. What do you think will happen if I just force myself to ride in the car anyway? Last time I nearly fainted. I need to try again by tomorrow. I’m not afraid of the car itself. I’m scared of what may happen if I force myself to proceed.

 

Hi LadyDen,

That sounds really frustrating! In my case, I have less dizziness in a moving car, which is one of the classic characteristics of Mal de Debarquement Syndrome. It's as if the movement of the car cancels out the sensation of dizziness. It's in most of the literature on MdDS, so I guess that's where I fit in, at this point. I guess everyone is a bit different when it comes to this.

 

Do you think it's your fear that's getting in the way? Can you just do a little bit at a time and make sure you have someone there with you? Maybe you can get used to it in small increments. The more positive experiences you have, the better.

[[La...]]

Yes I’m going to try several things to reduce stimulation. Earplugs, shades, covering my head etc

Yes it’s definitely some fear there. Fear of what might happen while I’m half way there. I’m going to have to just face it. Just go for it and SEE what happens instead of lent mind give me worst case scenarios. When I feel my symptoms increase I’m going to have to try to distract from them. In other words allow the best case scenario to flood my mind too. Thanks for your suggestion. Hugs!

Are you feeling better?

[[Be...]]

Maybe you can build up the ride?  Have someone just drive you down the street and back and then the next day a bit farther, etc.

[[La...]]

Yes I thought about that too but unfortunately I don’t have anyone that has the time to come over to do the short car rides each day. I wish I did.

[[Be...]]

Don't you have a nabe nearby who you could ride with if they go for a short trip?  Maybe call an Uber to drive you around a bit?

[[La...]]

Yeah, I was thinking that too -- a taxi or an Uber. Just take a short ride somewhere....meet a friend in a park or something nice like that. 

[[NY...]]

Hello all  

 

I just came across this article about chronic dizziness in the nyx: 

 

https://www.nytimes.com/2020/02/13/well/live/why-doctors-dismiss-dizziness.html?action=click&module=At%20Home&pgtype=Homepage 

 

Much of it resonated with me (for dizziness, and many other symptoms of protracted w/d), particularly this bit:  "if the tests don’t reveal the source of the problem, they tell us it must by psychological, essentially blaming us for our own illness."

 

Then I got to this bit - "The diagnosis of PPPD was useful for me in that it came with a new set of medications — a combination of Xanax, which makes the nerves in the brain less sensitive to stimulation; Zoloft, which regulates the brain chemical serotonin; and verapamil, a blood pressure drug. This drug regimen has given me a few hours of clarity each day. I can teach again and enjoy time with my family."

 

UGH!  It's so hard to trust the medical system after my experience with benzos.  Reading crap like this doesn't help. 

 

Love to you guys that are suffering with dizzies.  I still get it during some waves...mostly floaty/boaty.  It's such a debilitating symptom, but I truly believe it (and all sxs) will eventually resolve for us all.

 

Hang in there dear buddies.

 

WR

 

[[He...]]

Greetings everyone. I'm new to this particular group.  I hope this will be a little encouraging to people.  While on Z drugs for YEARS and at some point also Xanax and wine, I'd go through days of not even being able to walk. I could barely sit in a chair.  I constantly felt like I was in a boat and when I tried to walk I was so uncoordinated and shaky.  I mean serious disequlibrium to the point where I was crawling some days.  I am two months off of everything now and my balance has improved considerably.  I still have many other debillating symptoms but the floatiness and vertigo, etc have markedly improved.  I hope this gives people hope. All my best to the dizzy people!

 

[[La...]]

Hello all  

 

I just came across this article about chronic dizziness in the nyx: 

 

https://www.nytimes.com/2020/02/13/well/live/why-doctors-dismiss-dizziness.html?action=click&module=At%20Home&pgtype=Homepage 

 

Much of it resonated with me (for dizziness, and many other symptoms of protracted w/d), particularly this bit:  "if the tests don’t reveal the source of the problem, they tell us it must by psychological, essentially blaming us for our own illness."

 

Then I got to this bit - "The diagnosis of PPPD was useful for me in that it came with a new set of medications — a combination of Xanax, which makes the nerves in the brain less sensitive to stimulation; Zoloft, which regulates the brain chemical serotonin; and verapamil, a blood pressure drug. This drug regimen has given me a few hours of clarity each day. I can teach again and enjoy time with my family."

 

UGH!  It's so hard to trust the medical system after my experience with benzos.  Reading crap like this doesn't help. 

 

Love to you guys that are suffering with dizzies.  I still get it during some waves...mostly floaty/boaty.  It's such a debilitating symptom, but I truly believe it (and all sxs) will eventually resolve for us all.

 

Hang in there dear buddies.

 

WR

 

Wow, thanks for telling us about that article, NYC! Unfortunately, there's a paywall, and I can't read it. Is it possible to copy and paste a little bit of it? Regarding the part where they blame psych issues for dizziness, I'm not surprised. That's what I was writing about here a few days ago. I think it's a cop out. The testing isn't 100% accurate, so it can't reflect all types of dizziness.

 

As far as medications go, I've seen those sorts of prescriptions recommended in other articles as well. It's so crazy, since the medications themselves have dizziness as a possible side effect. Benzos are classified as "vestibular suppressants" in the medical literature, and they're only suggested for very short time periods for vestibular issues. They're not meant for long-term use, since they slow down the brain and interfere with "vestibular compensation". They may control people's anxiety reactions, though, which is not the same as the dizziness. It's the reaction people often have to feeling dizzy. Again, just sad that the focus isn't on how to decrease the dizziness, but rather, people's reactions to it.

[[La...]]

Greetings everyone. I'm new to this particular group.  I hope this will be a little encouraging to people.  While on Z drugs for YEARS and at some point also Xanax and wine, I'd go through days of not even being able to walk. I could barely sit in a chair.  I constantly felt like I was in a boat and when I tried to walk I was so uncoordinated and shaky.  I mean serious disequlibrium to the point where I was crawling some days.  I am two months off of everything now and my balance has improved considerably.  I still have many other debillating symptoms but the floatiness and vertigo, etc have markedly improved.  I hope this gives people hope. All my best to the dizzy people!

 

Fantastic post, HelenHMB! Thanks so much for sharing your good news with us. It really brings hope to others.

[[La...]]

For anyone who's interested, here's a study that looks at hormone levels in post-menopausal women who suffer from vestibular migraine (a condition which includes both a headache component and a vestibular/dizziness component). It's called "Clinical significance of serum sex hormones in postmenopausal women with vestibular migraine: potential role of estradiol". I'll post the abstract, as well as a link to the full study. Having come across numerous studies and papers (on Mal de Debarquement, in particular) that mention the possible link between female hormones and vestibular issues, I found this study really interesting.

 

https://pubmed.ncbi.nlm.nih.gov/34024170/

 

Abstract

 

Objective: This study aimed to investigate the role of sex hormones in postmenopausal women with vestibular migraine.

 

Methods: This observational study included 242 female patients with vestibular migraine who were postmenopausal during April 2017 to December 2019. Serum levels of sex hormones, including estradiol, progesterone, testosterone, follicle-stimulating hormone, luteinizing hormone, and prolactin, were determined by radioimmunoassay. The duration and frequency (every month) of onset of vestibular migraine were recorded. The degree of vestibular migraine was measured by the visual analogue scale.

 

Results: Serum levels of estradiol, progesterone, and testosterone were significantly lower, while serum prolactin levels were significantly higher in postmenopausal patients with vestibular migraine compared with healthy controls. Serum estradiol levels were negatively correlated with the duration, frequency, and severity of onset of vestibular migraine. Patients with higher serum estradiol levels showed a longer disease-free survival time.

 

Conclusion: Sex hormones are correlated with vestibular migraine in postmenopausal women. Additionally, estradiol levels are correlated with the duration, frequency, and severity of onset of vestibular migraine, as well as the disease-free survival time.

 

 

 

Full Study:

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8142534/ 

[[La...]]

And this study is showing the overlap between two types of dizziness -- what they called "migraine vertigo" (probably vestibular migraine) and Meniere's disease. It's called "Evolution of migraine vertigo in overlapping syndrome with Ménière's disease: prognostic role of instrumental examination". This seems to happen a fair amount, where the symptoms people experience can be part of a number of differently-named syndromes.

 

https://pubmed.ncbi.nlm.nih.gov/34028464/

 

Abstract

 

Introduction: Migraine vertigo (MV) and Ménière's disease (MD) share several signs and symptoms such as tinnitus, fullness, photophobia, phonophobia, headache and vertigo spells lasting hours.

 

Objective: The aim of the present study was to prospectively observe patients with MV with a sporadic audiological symptom evaluated with clinical examination, Vestibular Evoked Myogenic Potentials (VEMPs), ECochG and v-HIT.

 

Results: The finding of VEMP asymmetry, according to our cut-off of 33% of difference between sides, resulted in 20 cases, of which 6 had asymmetry of both c-VEMPs and o-VEMPS, all with development of fluctuating hearing during follow-up. ECochG was positive for endolymphatic hydrops in 12 patients.

 

Conclusions: The evolution of MV may have a variable course in which some patients may develop symptoms typical of MD. The two diseases may be contextually present at the same time configuring an overlapping syndrome, and asymmetric VEMPs might predict development of fluctuating hearing.

[[NY...]]

Hi Lapis! 

 

Here you go (although I see now that it was an old article from Feb, FYI):

 

Why Doctors Dismiss Dizziness

 

It’s one of the most common medical complaints, but patients say many doctors don’t take it seriously.

 

By Brian Platzer

Feb. 13, 2020

New York Times

 

Three years ago I wrote an essay for Well about the chronic dizziness that had devastated my life. In response, I received thousands of letters, calls, tweets, emails and messages from Times readers who were grateful to see a version of their own story made public.

 

Their symptoms varied. While some experienced a constant disequilibrium and brain fog that were similar to mine, others had become accustomed to a pattern of short periods of relative health alternating with longer periods of vertigo.

 

Most of them, like me, felt that family and friends often didn’t understand how dizziness could be so debilitating. They told me that the combination of the loneliness and feelings of uselessness that come from an inability to work or spend time with family led to despair and depression. And, most commonly, they felt that the medical system made them feel responsible for their own suffering.

 

“Doctors began to suggest that anxiety or depression were the cause of my symptoms,” a young woman from Connecticut wrote. “I eventually gave up on the quest for answers, as their attitudes added stress to an already stressful reality.”

 

“Have been to so many doctors that keep saying, ‘It’s all in your head. There’s nothing wrong with you,’” wrote an older woman from Ohio.

 

“Mostly been told there is nothing they can find,” wrote a middle-aged woman from Illinois. Her doctor told her it was probably just depression and anxiety.

 

Dizziness is among the most common reasons people visit their doctor in the United States. When patients first experience prolonged dizziness, they may go to an emergency room or to see their primary care physician. That’s what I did. And I heard what most patients hear: “People get dizzy for all sorts of reasons, and it should resolve itself soon.”

Sign up for the Well Newsletter  Get the best of Well, with the latest on health, fitness and nutrition. Get it sent to your inbox.

 

It’s true that dizziness often is a temporary symptom. The most common causes of dizziness are benign paroxysmal positional vertigo (caused by displaced pieces of small bone-like calcium in the inner ear), and vestibular neuritis (dizziness attributed to a viral infection or tiny stroke of the vestibular nerve), both of which typically last only weeks or months.

 

But approximately 20 percent of cases remain chronic, escape explanation, or both.

 

For me, as for so many thousands of others, the dizziness did not resolve itself, so I saw an otolaryngologist, a specialist in ear, nose and throat disorders. After an examination, the doctor said my inner ears looked good to him and sent me on my way.

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My vision had become blurry, so next I made an appointment with an ophthalmologist, who said my eyes were perfect. “It’s probably just stress and will go back to normal when things calm down,” she added.

 

It took a few months to get an appointment with a neurologist, who ordered a CT scan and an M.R.I. Both tests were clear. “Congrats!” he said. “No tumor. No Parkinson’s. No M.S. You’re good to go.”

 

But I couldn’t work or interact with my family, and most nights ended with me in tears. I was not good to go.

 

One of the problems for patients with dizziness is that doctors tend to be siloed into their own specialties by body part — eye, ear, brain. But dizziness is a problem with the vestibular system, which is the sensory system that collects data from the eyes, inner ear and muscles to help us keep our balance and posture. For many dizzy patients, each individual body part can test as healthy, but when they’re all connected, the system does not properly function.

 

And even the relatively small number of experts who do have appropriate training are often motivated by the insurance system to conduct exams and tests, rather than spending time talking to patients. And if the tests don’t reveal the source of the problem, they tell us it must by psychological, essentially blaming us for our own illness.

 

Because my wife works a corporate job and we live in New York City, I am lucky. I have great health insurance, proximity to local vestibular specialists, and access to some of the best university hospitals in the world. I was first diagnosed with vestibular migraine, and have since received a second diagnosis of persistent postural-perceptual dizziness, or PPPD. It’s an increasingly common diagnosis that describes chronic dizziness initially caused by one factor, like a virus or a fall, that has since affected the system as a whole. But even among experts there is disagreement about whether PPPD is a distinct condition or just an umbrella term.

 

My advice for people who suffer from dizziness is to be explicit with family, friends and co-workers about exactly what your symptoms are and how they affect your life. Vestibular disorders are invisible, which contributes to the loneliness sufferers feel.

 

I’ve learned other lessons about the specific steps that most dizzy patients should take.

 

If at all possible, make an appointment with a specialist in dizziness. There are excellent dizziness and balance centers across the country, including those at New York University, UPMC, the Mayo Clinic and Johns Hopkins. The Vestibular Disorders Association is a valuable resource for information and to find providers in your area. It is also important to continue to seek second and third opinions if you feel as though a particular specialist isn’t right for you.

 

Acknowledge the psychological distress these disorders cause. Do your best to find and meet regularly with a psychotherapist who has experience working with patients who suffer from chronic medical conditions. Find a support group on Facebook. I have made beneficial connections in online forums where thousands of people trade advice, encouragement and consolation.

 

The diagnosis of PPPD was useful for me in that it came with a new set of medications — a combination of Xanax, which makes the nerves in the brain less sensitive to stimulation; Zoloft, which regulates the brain chemical serotonin; and verapamil, a blood pressure drug. This drug regimen has given me a few hours of clarity each day. I can teach again and enjoy time with my family.

 

I am also writing again. In my new novel, which comes out in March, the protagonist suffers from the same symptoms that I do: the brain-fog, dizziness, vision loss and discombobulation along with the existential anxiety that these symptoms will last forever. Writing the novel allowed me to process my own experience and better think through the experiences of my loved ones who have supported me throughout the ordeal. The hope I now feel about my future, even one that includes dizziness, is captured in a scene where the main character’s wife asks her husband if he feels better.

 

“Not really,” he says. “But I’ve been doing more. I’ve been better at imagining the life I want to live.”

 

 

 

[[He...]]

Lapis and NYC wave rider,

 

Thanks for all that good info and those links. I'm going to read all of that. it's always good to learn more.  Hold it steady!

 

[[La...]]

Thanks so much, NYC! I'll read it carefully a bit later on, but I really appreciate that you took the time to do that.