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

[[Be...]]

Well, I had a vertigo attack today. I am the one that’s getting vestibular rehab right now after being off benzos for almost 3 years. I was driving to work and I felt some anxiety and I thought I was having a panic attack. Then all of a sudden it was like everything was moving too much. By the time I got to work I pulled over and I could not get out of the car. It’s almost like I have symptoms of Ménière’s disease. I think this is brought on by a tiny bit of caffeine inside my hot chocolate. This is the second time it’s happened in two months. The last time it happened was when I started drinking chai tea (also has caffeine). When it happens, I literally cannot walk. The whole room and universe is spinning. If I lay still I’m fine. It lasts about 24 hours. Anyone else?

 

I've had the same issues while driving to and from work. I just pull off the road and let it pass. I have given up trying to figure out why it happens. I just assume it's my Clonazepam causing the vestibular issues. I remember drinking a mountain dew on the way home one day.. HUGE mistake! I thought I was going to die. I drove straight to the ER and just sat in the parking lot for about 2 hours until the panic attack/dizziness passed. I hope you feel better, soon! I know it's rough to have to experience these symptoms.

[[an...]]

I wish it passed that quickly for me but it was really bad for 10 hours straight to the point I can barely walk to the bathroom. I couldn’t drive or even sit up in my car. I had to have a friend come pick me up from work because I couldn’t drive. I slept pretty well but am scared to get out of bed and see if it’s still here.

[[Be...]]

Good morning all!

 

I just wrote down all of the things that I am experiencing as I write this. I'll list them below.

 

Disoriented and dizzy/fuzzy, but nothing is spinning like being drunk

Strange, drugged feeling in my head

Odd feeling in and behind my eyes

Chest feels tight or sunken in

Arms and legs feel wobbly

Hands and arms feel very shaky

My jaw feel clinched/ strange sensation in jaw and ears

Breathing is very shallow

Strange feeling of excitement or anxiety in my chest <-- hard to explain

[[La...]]

Hi Benz,

I can relate to some of the symptoms you listed there -- the shaky and wobbly feelings, the anxiety, the strange feeling in the head. I think it's all par for the course, and unfortunately, very unnerving. I try to counteract some of it with some positive self-talk or deep breathing whenever I can. Today's a dizzier day for me, so I'm going to have to put these things into practice today.

 

Have you found anything that helps you out when you feel like that?

[[Be...]]

Hi Benz,

I can relate to some of the symptoms you listed there -- the shaky and wobbly feelings, the anxiety, the strange feeling in the head. I think it's all par for the course, and unfortunately, very unnerving. I try to counteract some of it with some positive self-talk or deep breathing whenever I can. Today's a dizzier day for me, so I'm going to have to put these things into practice today.

 

Have you found anything that helps you out when you feel like that?

 

Nothing I do seems to help. I eat plenty of fresh fruit, chicken, and veggies. I also workout and drink quite a bit of water. My diet and exercise routine doesn't seem to help at all with the sx. At least I look good lol

[[Bi...]]

For anyone else is the dizziness signicantly worse in the morning after waking up for the first few hours?

[[La...]]

Hi BigSky,

For me, if it's a less dizzy day, then it usually stays like that the whole day. In the same vein, if it's a dizzier day, then that same level of dizziness remains throughout the day. I'll be interested to hear what others have to say, but my guess is that it's quite an individual thing.

 

 

[[Be...]]

For anyone else is the dizziness signicantly worse in the morning after waking up for the first few hours?

 

I get up for work at 4:30 am, but I don't start feeling the symptoms until 8:00 am.  It tends to get really bad from 10:00 to 3:00.

[[Va...]]

BigSky

 

It's worse when I first wake up but I figure that is because I have been lying down most of the night and have not yet had my morning medication or it hasn't peaked in my system.

 

I got my first attack of 'boatiness' five to six weeks ago and it lasted days.

 

It started before bed but I didn't know what it was, then when I got up to pee around 5 a.m. it was full-blown but my husband thought it was just normal dizziness I get from the meds, so I went back to bed and when I woke up it was worse.

 

I didn't let it stop me from much: I did my exercises--the lying down ones and all but 'balance' yoga. I did walking meditation inside the flat but skipped sitting meditation.

 

I did dishes and made myself stuff to eat but just made sure to move slowly.

 

The worst times were getting up from a lying down position in bed. Sometimes I fell back and had to get up again, and then moving out of the bedroom, I always listed to the left so I'm glad that the doorway out into the hall and the rest of the flat is to the left or wow, that would have been harder.

 

I don't know how long this bout will last--it hit again last evening so I stopped walking because of the dizziness, went to bed and woke up with what I am now calling Deck Hand Syndrome in honor of sailors and anyone else who are on a ship's deck during stormy weather.

 

Good luck accepting this and doing what you can to boost your confidence, keep yourself safe and do as much as possible so you don't feel too helpless or blue.

[[La...]]

Hi Dizzy Buddies,

How is everyone holding up? I'm having a pretty dizzy day today, I'm just trying to get through it one hour at a time. Having not slept much, that's about all I can do.

 

Anyway, I was just doing a bit of research, and I came across this 1976 study title:

 

"Antagonistic effects of GABA and benzodiazepines on vestibular and cerebellar neurones"

 

https://www.ncbi.nlm.nih.gov/pubmed/3742

 

It's just a reminder of how long they've known about the the negative effects of benzos on balance. That's 42 years ago, but much was known earlier than that too, i.e. in the 1960s.

 

  :(

 

>

 

Here's a recent study (well, just an abstract, actually) that I came across, which led me to the 1976 study:

 

2018 Nov 19;28(22):R1296-R1298. doi: 10.1016/j.cub.2018.09.053. Epub 2018 Nov 19.

 

"Gravity Perception: The Role of the Cerebellum"

 

MacNeilage PR1, Glasauer S2.

Author information

 

1

    Department of Psychology, Cognitive and Brain Sciences, University of Nevada, Reno, USA. Electronic address: pmacneilage@unr.edu.

2

    Computational Neuroscience, Institute of Medical Technology, Brandenburg University of Technology Cottbus - Senftenberg, Germany. Electronic address: stefan.glasauer@b-tu.de.

 

Abstract

 

The cerebellum is known to support motor behaviors, including postural stability, but new research supports the view that cerebellar function is also critical for perception of spatial orientation, particularly because of its role in vestibular processing.

https://www.ncbi.nlm.nih.gov/pubmed/30458146

 

 

 

[[La...]]

Here's a recent study:

 

2018 Nov 15. doi: 10.1097/WCO.0000000000000632. [Epub ahead of print]

 

"Vestibular rehabilitation: advances in peripheral and central vestibular disorders"

Dunlap PM1, Holmberg JM2, Whitney SL1,3.

Author information

 

1

    Department of Physical Therapy, University of Pittsburgh, Pittsburgh, Pennsylvania.

2

    Department of Rehabilitation Services, Intermountain Health Care Hearing and Balance Center, Salt Lake City, Utah.

3

    Department of Otolaryngology, University of Pittsburgh, Pittsburgh, Pennsylvania, USA.

 

Abstract

 

PURPOSE OF REVIEW:

 

Rehabilitation for persons with vertigo and balance disorders is becoming commonplace and the literature is expanding rapidly. The present review highlights recent findings of both peripheral and central vestibular disorders and provides insight into evidence related to new rehabilitative interventions. Risk factors will be reviewed to create a better understanding of patient and clinical characteristics that may effect recovery among persons with vestibular disorders.

 

RECENT FINDINGS:

 

Clinical practice guidelines have recently been developed for peripheral vestibular hypofunction and updated for benign paroxysmal positional vertigo. Diagnoses such as persistent postural-perceptual dizziness (PPPD) and vestibular migraine are now defined, and there is growing literature supporting the effectiveness of vestibular rehabilitation as a treatment option. As technology advances, virtual reality and other technologies are being used more frequently to augment vestibular rehabilitation. Clinicians now have a better understanding of rehabilitation expectations and whom to refer based on evidence in order to improve functional outcomes for persons living with peripheral and central vestibular disorders.

 

SUMMARY:

 

An up-to-date understanding of the evidence related to vestibular rehabilitation can assist the practicing clinician in making better clinical decisions for their patient and hopefully result in optimal functional recovery.

 

https://www.ncbi.nlm.nih.gov/pubmed/30461465

[[Be...]]

Here's a recent study:

 

As technology advances, virtual reality and other technologies are being used more frequently to augment vestibular rehabilitation.

 

Thanks, Lapis! It's interesting that they're looking into virtual reality as a possible treatment. I recently purchased a virtual reality gaming set for the Sony Playstation 4. I was SO excited to try it out. I played around with it for about 30 minutes, before I became extremely ill, nauseous, and dizzy. I had to take this system back for a refund. Here's a pretty good video of what I'm talking about. 

 

 

[[La...]]

Hi Benz,

Great video! Thanks for posting it.

 

I actually shared an article on this topic a little while ago. People who play these online games are susceptible to motion-sickness-type symptoms, and it makes complete sense. If the eyes see all kinds of movement, but the body is remaining stationary, then that's a perfect recipe for nausea and dizziness.

 

Many of us here have issues watching certain types of onscreen action. I remember being unable to watch certain parts of the Olympics, e.g. bike races, and some movies are just out of the question, e.g. fast-paced and strange or jarring camera action. It may be the same for non-dizzy people, though, so I don't necessarily think it's just me or just us. The brain just doesn't like that sort of thing -- and for good reason!

 

[[La...]]

Hi Everyone,

I came across a pretty interesting study on how they're using telemedicine to help with diagnostics for a certain kind of dizziness. Note the amount of money that's spent in the U.S. on emergency department visits for dizziness -- over $4 billion! It's a huge issue.

 

 

https://www.ncbi.nlm.nih.gov/pubmed/30478898

 

"Smartphone telemedical emergency department consults for screening of nonacute dizziness"

 

Shah MU1, Lotterman S2, Roberts D1, Eisen M1.

 

Author information

 

1

    Department of Otolaryngology, University of Connecticut School of Medicine, Farmington, Connecticut, U.S.A.

2

    Department of Emergency Medicine, University of Connecticut School of Medicine, Farmington, Connecticut, U.S.A.

 

Abstract

 

OBJECTIVES/HYPOTHESIS:

 

Each year, the United States spends over $4 billion on emergency department visits for evaluation of dizziness. Benign paroxysmal positional vertigo (BPPV) is a common cause of dizziness that can easily be diagnosed by observing characteristic eye movements during the Dix-Hallpike test (DHT). The DHT is easily performed; however, interpretation requires more advanced training. This may be part of the reason it is not commonly performed in emergency departments, and instead, patients undergo costly imaging tests. We evaluated whether smartphone-based video recordings of DHT could be assessed telemedically for screening of nonacute dizziness.

 

STUDY DESIGN:

 

Feasibility study.

 

METHODS:

 

Dizzy patients underwent objective vestibular testing, but also had videos of their eye movements recorded via a smartphone during the DHT. The videos were remotely reviewed by two neuro-otologists for BPPV screening and were compared to objective and in-person exam findings.

 

RESULTS:

 

Overall, 30 dizzy patients were evaluated with seven cases of BPPV. The sensitivity for diagnosing BPPV via a smartphone-recording of eye movements of the DHT was 92.86%, with a specificity of 100% and a negative predictive value of 97.87%.

 

CONCLUSIONS:

 

Our initial proof-of-concept study shows that remote screening of BPPV is possible with high specificity. Because the DHT is easily taught, having a remote otolaryngologist interpret the resulting eye movements may increase usage of the test and may lead to cost savings.

 

LEVEL OF EVIDENCE:

 

4 Laryngoscope, 2018.

[[La...]]

I know no one around here is aging (!!), but just in case it happens, there's this study:

 

 

https://www.ncbi.nlm.nih.gov/pubmed/30482312

 

 

"Aging"

 

Lord SR1, Delbaere K2, Sturnieks DL2.

 

Author information

 

1

    Falls, Balance and Injury Research Centre, Neuroscience Research Australia, Sydney, NSW, Australia. Electronic address: s.lord@unsw.edu.au.

2

    Falls, Balance and Injury Research Centre, Neuroscience Research Australia, Sydney, NSW, Australia.

 

Abstract

 

This chapter reviews studies that have examined age-related anatomic and functional changes in sensory, neuromuscular, and cognitive systems that impair the control of balance and gait. Specifically, we examine age-related changes in peripheral systems: lower-limb sensation, visual functions such as contrast sensitivity and depth perception, vestibular sense, strength, and power in the lower-limb muscle groups, as well as central factors including processing speed and executive functioning. Significant impairments in any one of the above systems can predispose older people to falls, with the risk of falling increasing substantially with the number of impairments present. There is increasing evidence that interventions aimed at addressing specific sensory and neuromuscular impairments can improve balance control and reduce fall risk. In particular, task-specific exercise can improve muscle strength, balance, gait and mobility and prevent falls in older people.

[[La...]]

Hi All,

How is everyone doing? I'm having a less dizzy day today -- a 6 out of 10 for me. Yay! It's a nice break from the intense 8s and 9s I've been having.

 

I'm still reading and researching, and I came across this recent study called:

 

"Disorders of the inner-ear balance organs and their pathways"

 

Abstract

 

Disorders of the inner-ear balance organs can be grouped by their manner of presentation into acute, episodic, or chronic vestibular syndromes. A sudden unilateral vestibular injury produces severe vertigo, nausea, and imbalance lasting days, known as the acute vestibular syndrome (AVS). A bedside head impulse and oculomotor examination helps separate vestibular neuritis, the more common and innocuous cause of AVS, from stroke. Benign positional vertigo, a common cause of episodic positional vertigo, occurs when otoconia overlying the otolith membrane falls into the semicircular canals, producing brief spells of spinning vertigo triggered by head movement. Benign positional vertigo is diagnosed by a positional test, which triggers paroxysmal positional nystagmus in the plane of the affected semicircular canal. Episodic spontaneous vertigo caused by vestibular migraine and Ménière's disease can sometimes prove hard to separate. Typically, Ménière's disease is associated with spinning vertigo lasting hours, aural fullness, tinnitus, and fluctuating hearing loss while VM can produce spinning, rocking, or tilting sensations and light-headedness lasting minutes to days, sometimes but not always associated with migraine headaches or photophobia. Injury to both vestibular end-organs results in ataxia and oscillopsia rather than vertigo. Head impulse testing, dynamic visual acuity, and matted Romberg tests are abnormal while conventional neurologic assessments are normal. A defect in the bony roof overlying the superior semicircular canal produces vertigo and oscillopsia provoked by loud sound and pressure (when coughing or sneezing). Three-dimensional temporal bone computed tomography scan and vestibular evoked myogenic potential testing help confirm the diagnosis of superior canal dehiscence. Collectively, these clinical syndromes account for a large proportion of dizzy and unbalanced patients.

 

https://www.ncbi.nlm.nih.gov/pubmed/30482329

 

I'm not quite sure that we fit into any of these descriptions.

 

 

[[Ko...]]

Hi Dizzy Buddies,

 

Just checking in. I only post every couple of months to let you know how I’m doing and to check to see if anyone has found a solution to our boatiness.  I’m now starting my 6th year being off to the meds.

I’ve been boaty the last 3 years.  I didn’t have boatiness the first two years of withdrawal. Boatiness is the worst symptom I still have, but I still suffer burning skin on my lower legs. That symptom is getting better. Also, still suffer from insomnia, which is what caused me to start taking Benzos. I can deal with that because I don’t have to work anymore and can sleep anytime I can.  Occasionally, I have a severe bout of Akathesia where I can’t sit still or even lie down. It’s horrible and last about 12 hrs. Don’t know what causes it to happen, I think it’s brought on by a lack of sleep.

 

Long story short, I’m just waiting for my brain to heal. I read one guy’s success story where it took him 12 years to finally heal. I hope it doesn’t take that long since I’m 73.

 

I wish you all happy holidays and praying you can get off the boat soon.

 

Korbe

[[La...]]

Hi Korbe,

Good to hear from you again! Thanks for checking in and updating us. It's good to know that some of your symptoms are getting better. Have you noticed any change in the intensity of your dizziness over time? How are you doing with walking and doing your daily activities?

 

The akathisia sounds really unpleasant, but the fact that it passes in a few hours is really positive. At least you know that it won't go on and on. Are you able to distract yourself while it's happening? I have to use a lot of distraction to get through some days, e.g. radio, reading, videos, research, etc. This whole experience can be so brutal at times.

 

Take good care, and thanks again for dropping in!

 

[[Ki...]]

Hello everyone

Just dropping in to say Hello

Still dizzy and boatiness feeling.

But definetely better than before .

Slow healing of brain.

I can walk a few steps now but everyday is different.

Merry Christmas and Happy New year dear friends.

Sending hugs Lapis.

How are you doing.

Have not read any posts here for a long time.

 

[[je...]]

Lapis, i see that you first posted in March 08, 2015 when you started this discussion.

it's now Dec 24, 2018. Are you still having these

dizzy sxs w/ the same severity as you did in the beginning?

miles to go before i'm off.

 

[[Fp...]]

Im 2 months off today and lightheadedness is my main symptom. I wouldn't call it dizzy (like spinning dizzy), its just more of a lightheaded feeling. Its quite uncomfortable as you all know. I have days where it is worse and days where  I dont notice it quite so badly. When I do get it my anxiety increases because I worry that it may be permanent. I have stayed away from this section of the forum because I dont want to get discouraged with "horror" stories. My anxiety and depression have really improved in the last 2 months since jumping. I hope my dizziness/lightheadedness improves overtime. Do most people tend to see improvements over time. I know dizziness is a common withdrawal symptom, but I guess for some it sticks around much longer. Have you guys heard of many people that recover from  the dizziness and lightheaded feelings. I pray we all heal in time.

Thanks,

Fp

[[La...]]

Hello All!

Maybe I can answer the questions a bit. First of all, yes, dizziness/disequilibrium is a really common withdrawal symptom, and it's also a well known side effect of taking the medication. It's in all of the literature on this class of meds. We've had lots of people pass through this thread -- jump on for awhile and then jump off -- so it's very difficult to know how long people's balance issues last. Really, it's completely impossible, so I won't even try. But suffice to say, that it's a withdrawal symptom like the others, and it, too, should pass.

 

In the Success Stories, some people mention it, others don't, but many, many people experience it along with the whole gamut of symptoms that they had and that left.

 

As far as "over time" changes vs. sudden changes, I've heard of both here. Again, I wish people would come back and tell us their experiences, but many people who get better just move along and get back to living. I can think of a number of people for whom that's true. They're better now, but they -- for whatever reason -- didn't come back to write the details here or in the Success Story section. Who knows? Maybe they still will!

 

Jessie, to answer your question: My pattern tends to be an every-other-day sort of thing, with one better day, followed by one worse day. I've heard of it with others too. So, yes, I'm still dealing with it, but it doesn't mean that anyone else around here will have a similar situation. What's crystal clear around here is that everyone is different. It's best not to compare too much because it's a sure way to make oneself nuts! Just focus on putting one foot in front of the other and doing what you need to do to reach your goal and to get healthy.

 

Take good care, Everyone!

 

 

[[Fp...]]

Thanks Lapis,

I can assure you that if this passes for me, I WILL come back to let people know. I dont know about everyone else, but as for me, the main reason I come here is to seek reassurance and to try to give some hope to others when I can. I like the fact that, as you said, dizziness is a withdrawal symptom that should pass like all others. And the fact that many people "come and go" on this board gives me some assurance that people are healing and moving on. Thank you so much and I hope everyone has a Merry Christmas!

Fp

[[La...]]

Yes, the nature of BB is to come and go...which is good and bad. It's good, obviously, because people are free to do what they like, but when it comes to getting a handle on how people are doing, well...it's pretty tough to do. We don't have the statistics, but everyone, and I mean EVERYONE wants to know the stats!

 

Just hang in there and try to believe in the amazing healing powers of the human body. My go-to word if I'm feeling lost or down is usually "Resilience". We need that in spades to get through this sometimes.

[[Ho...]]

I am checking in and hoping to hang around here a bit more as the boaty feeling is my most tormenting symptom. I really need support and community as I suffer from this hideous symptom. Mine started July of 2013, when I was off the benzo for 3.5 months. It has not stopped for one second since, or lessened. It has changed though; from long swaying movements to short jerky ones which are just as evil. 4 people told me I am not rocking as much, which angers me because in their mind I am "better". I am not, I just respond differently to different sensations.

 

Oh well. enough venting. I had an unsuccessful brain surgery in October for Chiari Malformation (which I was hoping would have helped my boaty feeling and pressure) and since, three specialists the surgeon referred me to have refused to see me with lame reasons. I guess its just more of the dreaded word.....TIME.

 

Lapsis......I see you post a lot of studies you have found. I have not taken the time to read much (cognition is still limited) but am wondering if you have found any promising relief or solutions in your studies?