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

[[La...]]

Wow, that's quite the story, janiceh! It's true that symptoms of one illness can be similar to those of another. Oftentimes, the diagnosis has to be made by eliminating other things and by looking at the history. I really don't know anything about Lyme disease, but I'm glad to know that yours is considered to be in remission for the time being. Is it a recurrent thing?

 

Did you know there are some Canadians of note who have been public about their struggles with Lyme disease -- Shania Twain, Avril Lavigne and, most recently, Justin Bieber? Here's a BBC article on JB and his Lyme diagnosis:

 

https://www.bbc.com/news/entertainment-arts-51041033 

 

As far as the benzos go, there seems to be a certain commonality in the type of dizziness symptoms, which has been described as "floaty boaty". Did you check out the first page and the common descriptive words that BBs have used for their dizziness? At the time that I wrote that post, I had tried to gather as many descriptors as I could. Do any of them ring true for you? Mine is very much a floaty, boaty, push-pull, stuck-in-the-current sort of thing. It's very much in my body and not a matter of the floor moving or things moving around me. What about yours?

 

For me, the dizziness diagnosis that makes the most sense is "Mal de Debarquement Syndrome", and I've posted links to just about every study I've read on this topic here on this thread. There are two noted kinds of MdDS -- "motion-triggered" (e.g. from a cruise) and "spontaneous or other onset", which is where I would put myself. The descriptions given in these studies fit my symptoms well.

 

It seems like you're on the right path here with your taper. It's a matter of patience and persistence...and luck, I think. You're moving in the right direction. Benzos suppress the normal function of the vestibular system, and they're not meant for long-term use. The fact that any of us has been put on them for many years flies in the face of known dangers. It's in all of the literature. 

 

Anyway, stay strong, janiceh, and keep your spirits up! 

[[ja...]]

Lapis2... thank you so much for your loving words of encouragement.  That means everything.  It sounds like we are sisters in symptoms. 

 

My worst sx are the tinnitus and dizziness.  It's hard for me to describe my dizziness.  All of the above sound right. 

 

When I am doing yoga, I can make it a lot worse by sideways motion - particularly on one side.  If I am having a flare,  and I move from side to side, or horizontal to vertical - It can take me several seconds to minutes to recover.  Kind of like the spins from drinking. 

 

Some days I wake up and with my eyes still closed (and the shrieking in my head), I am spinning or moving thru space.  Those days are the hardest to get a grip on. I feel like I'm in hell, but I tell myself that this could be the best day of my life..... I try not to give in to the rabbit hole.  Once and awhile I wake up and just bawl.

 

I balance with my eyes more than anything - once in awhile, like today - my eyes jerk back and forth when I'm finding my balance.  This is not my usual state tho...  who knows what I can expect in the days to come?

 

I am in a flare right now, and feel like boiled crap most of these days.  I've noticed that the full moon (right now) has a big effect on my severity.  With both the Lyme, and withdrawal/taper.

 

I am still in remission (I hope) - but because my infection went untreated for so long, the bacteria disseminated throughout my body.  Treated Lyme can lie dormant, and return later during times of stress (or age).  I haven't had antibiotics for at least 5 years now.  I am totally subscribed to a healthy lifestyle.  I don't have a choice really.

 

I am so sorry to hear that you are still healing/restoring - from your taper.  That is a long go for you.... you must be made of tough stuff.  I know hormones and perimenopause can trigger lots of brain stuff - migraines etc.  Have you ruled out Lyme disease or other medical conditions? 

 

 

[[La...]]

Hi janiceh,

In my case, I sought help when I first became noticeably dizzy. I'd had some dizziness here and there, but then it became more pronounced and problematic. I saw a number of ENTS, as well as a vestibular physiotherapist, an optometrist, an opthalmologist, a neuro-opthalmologist, a neurologist, a physiatrist and, eventually, a psychiatrist. I underwent vestibular testing and did vestibular physiotherapy for many months. I had CAT scan of my head.

 

Yup, it was a lot.

 

The psychiatrist said that it was a medication-induced dizziness, based on the symptoms and history (types of meds taken, onset and types of symptoms, elimination of other things, etc.). Lyme doesn't make sense in my case at all, so I didn't bother checking that out.  I wouldn't go down that route now either, because it just doesn't fit. There are many, many causes of dizziness, and it can be hard to nail down the cause, but it's important to eliminate certain possible diagnoses. That's why I saw so many different doctors at the beginning. I wouldn't want to go through it all again, but I'm glad I was able to eliminate a bunch of things.

 

You didn't mention what the doctors have said and what they're suggesting in your case. Is someone helping you with your benzo issues? I assume you're getting a prescription from your doctor, so is s/he supportive of your tapering plan? In my case, I brought the Ashton Manual tapering plan to my doctor and asked if he could provide me the diazepam I needed in order to do a cross-over and slow taper according to the schedule. He was fine with that but not knowledgeable on the topic. I wasn't on BB at the time, so I just plowed on through it by myself.

 

Have you done any vestibular rehabilitation? It sounds like you're able to keep quite active, so that's amazing. I'm sure that will help you a lot. Maybe vestibular rehab can be of some use in your situation, especially because you say that certain motions affect your symptoms. In my case, it didn't address my symptoms, but because you have multiple causes of your dizziness, you might benefit from it.

[[Ch...]]

I started tapering November, just recently I had bad sinus pressure and vertigo.  Went to the dr. he said it was sinusitis gave me a whole bunch of meds.  I'm still off balance since last Friday.  Could this all be due from tapering and not sinusitis at all.  If so I hope it goes away I have to commute to work on the train everyday.  My job involves alot of night meetings.  This sucks

[[La...]]

Hi Charlie,

Benzos can cause dizziness while you're on them, while you're coming off them and during the post-taper period.  So, you definitely have to keep that in mind as a possibility.

 

You said the doctor diagnosed you with sinusitis, so perhaps he did some sort of examinations in order to come up with that idea. What kind of exams did he do while you were there? The sinus issue might be one thing, while the dizziness might be a separate thing, e.g. the benzos.

 

The thing with dizziness is that it can have many different causes, and sometimes it's a matter of elimination various possibilities in order to come up with the diagnosis. There's specific vestibular testing available, as well as CT scans and MRIs that can be used as part of the testing for dizziness.

 

The other thing to note is that many other medications can cause dizziness too, e.g. antihistamines, antibiotics, all the psychiatric meds, etc. The list is long.

 

 

[[ja...]]

Hi Lapis2. 

 

I have two amazing GP's who are somewhat savvy about benzos.  Mine was first prescribed by an ENT to help with vertigo from Lyme and concussion.  When my docs (who share a practice) were away on holidays in November, I was 3/4 into my taper, and having a very hard time.  I saw a young locum GP - up visiting, from a large city.  He was incredible! and mentioned he had witnessed many benzo withdrawals. Younger doctors may have had better training? 

 

He knew all about half-life and benzo loads.  He shared with me in a quiet voice that it would likely be the worst, after I jumped.  He encouraged me to go really slow.  One of my usual GPs indicated that my taper would be a failure.  The other is encouraging, but has never had a patient in benzo withdrawal before.  When I was ready to quit 5 years ago, it would have been such a joy to get the right kind of information!!    But anyways, here I am now.  Going in the right direction.  My both GPs totally support me to get off, or stay on benzos.  They are leaving it up to me.    Without benzobuddies I would have failed this taper.  Because my docs can't tell me - yes - what you are experiencing is routine and even normal.  Although they are incredibly supportive, they don't have the info or experience. 

 

And OMG - what a joy yesterday.  I was visiting some old friends (a rare event) and I asked the man (94 yrs old) how his dizziness was going.  I knew he had been incapacitated by it.  He told me that it was long-gone.  He said that he had been doing these exercises.  These are the BBVP? ones.  I googled them when I got home and realized that early on during my Lyme infection, I had tried them over and over.  To no avail. 

 

So yesterday morning (I am in my 4th week of constant spins and nausea) I flop down on the bed and give the 'Epley' series a try.  I really see why you should not try these alone!  My first round made me incredibly sick..... I got extreme vertigo, jerky eyes, heart hammering, and broke out into a drenching sweat.  I almost barfed.  I felt pressure shifting in my right ear.  I rested for a bit until I regained myself, and then tried a second set. 

 

It was like a small miracle - I had no vertigo, and have had none ever since.  Its so weird!  I am still floaty boaty but the nausea and the constant spinning is Gone.  So.  Here's what I am wondering......  I am wondering if my benzo taper is so small now that my ear tissues aren't being bathed in a toxic sedative.  That my ear crystals are responding properly!!  But I am so glad I gave it another try!!!  I just cut my dose two days ago and was expecting severe repercussions..... and so far so good.... I have all the other w/d sx but they are so much easier to handle.  What is strange is that I am constantly doing yoga inversion postures and lots of side to side head motion.  Lots.  But it had to be exactly the series of exercises laid out in the Epley manouver.  Go figure.

 

I feel so glad to have this significant break!!  It has been daunting for so many years to be bedridden and incapacitated with no sense of control over my body when the vertigo comes on.  These last two days I have been walking around in a state of disbelief.  Like some really bad smell is gone.  Is it too good to be true?  Time will tell!

 

Anyways it feels so good to have a rant about positive change!  Hey thanks for the encouragement to sort through what kind of dizziness I have and all the links you provided.  I may not have tried my friends advice without it. 

[[La...]]

Hi janiceh,

That's fantastic news! I'm really glad the Epley maneuver helped you. It sounds like you've been having symptoms of BPPV (benign paroxysmal positional vertigo). It has to do with the crystals in the semi-circular canals, and it can certainly cause the spins (vertigo) and nausea -- especially with head movements. Did you have nystagmus too? It's one of the signs of BPPV as well.

 

The mechanism by which benzos and other psych meds affect balance likely has much more to do with their effects on the neurotransmitters. There are many (at least eight, according to some documents I've read) neurotransmitters involved in balance, so when we take medications that alter them, we run the risk of getting dizzy. This article is called "Neurotransmitters in the vestibular system", and it gives you a sense of just how complex our system of balance is:

 

https://www.dizziness-and-balance.com/anatomy/physiology/neurotransmitters.htm

 

The list of neurotransmitters involved in balance includes glutamate, acetylchoine, gamma -aminobutyric acid (GABA), dopamine, serotonin, histamine, glycine and norepinephrine, among others.

 

Hang in there! Let's hope that your recent breakthrough is a sign of good things to come. It's great to hear that you have supportive doctors on board too, as that can play a big role in all of this. Many BBs have little or no medical support, and it can be really problematic (e.g. if the person can't get the meds to taper or isn't believed if symptoms worsen).

 

Take care!

[[La...]]

Hi Dizzy Buddies,

I'm not sure how many folks are checking in here, but I hope everyone is hanging in there. I just wanted to share an interesting study I came across today as I was checking PubMed's latest vestibular studies to see if anything might be useful for us. This isn't something I've come across before, but in this particular study, the researchers are trying to find out whether sleeping with the head in a more upright position, e.g. 45 degrees, as well as something referred to as "vertical recognition training" or "VRT" may help with certain kinds of dizziness. In past, I've seen "VRT" refer to "vestibular rehabilitation therapy", so I'm not sure if this might constitute an error, some sort of language issue or some new type of treatment. I couldn't find much on this type of VRT, but there's lots on vestibular rehabilitation therapy. 

 

Here's the study:

 

Combination of head-up sleep and vertical recognition training may cure intractable motion-evoked dizziness with unknown origin.

 

Kitahara T1, Horinaka A1,2, Shiozaki T1, Ito T1, Wada Y1, Yamanaka T1, Nario K1,2.

 

Author information

 

1

    Department of Otolaryngology-Head and Neck Surgery, Nara Medical University, Kashihara-City, Japan.

2

    Department of Otolaryngology-Head and Neck Surgery, Nara Prefecture General Medical Center, Nara-City, Japan.

 

Abstract

 

Background: It has been reported that head-up sleep (HUS) prevents free-floating otoliths from entering canals and that vertical recognition training (VRT) promotes vestibular compensation.

 

Aims/objectives: We would like to assess HUS and VRT for intractable motion-evoked dizziness, including possible benign paroxysmal positional vertigo (BPPV).

 

Materials and methods: 162 patients diagnosed with intractable motion-evoked dizziness of unknown origin were enrolled and randomly divided into the following four groups: HUS-/VRT-, HUS+/VRT-, HUS-/VRT+, and HUS+/VRT+. The at-home interventions comprised HUS with an upper head position of 45° when lying down and VRT with a right down-left down 30° head inclination while watching the vertical index.

 

Results: At the post-treatment 6th month, visual analogue scale (VAS) scores for vertiginous sensation were significantly lower in the HUS+/VRT + group than in the HUS+/VRT - and HUS-/VRT + groups, which were in turn significantly lower than those in the HUS-/VRT - group. VAS scores in the HUS-/VRT + group of patients with abnormal subjective visual vertical (SVV) were significantly lower than those in the HUS+/VRT - group, while those in the HUS+/VRT - group of patients with normal SVV were significantly lower than those in the HUS-/VRT + group.

 

Conclusions: HUS and/or VRT is a good initial treatment for patients with intractable undiagnosed motion-evoked dizziness, including possible BPPV.

 

https://www.ncbi.nlm.nih.gov/pubmed/32069120

[[La...]]

Well, here's an "interesting" title for a study on dizziness: "Is drug consumption correlated with benign paroxysmal positional vertigo (BPPV) recurrence?" I think many of us around here might have a quick answer to that question. I haven't yet read the full study, but the reference in this abstract to "central nervous system agents" might well refer to benzos, antidepressants and/or other psychiatric medications. If so, then the connection between them and dizziness has already been made in previous literature, although the type of dizziness or sensations of imbalance might not be well described. "Vertigo" and "dizziness" and "disequilibrium" aren't always used in the same way to describe the same sensation. I'll have a look at the full study and see if there's any clarification regarding the term "central nervous system agents".

 

In any case, here's the abstract:

 

Abstract

 

BACKGROUND:

 

Benign paroxysmal positional vertigo (BPPV) is the most common cause of peripheral vertigo and its recurrence is fairly common. Several studies correlated the pathophysiological role of different comorbidities-such as diabetes, osteoporosis, vascular, psychiatric and autoimmune diseases-in the development and recurrence of BPPV. The aim of this study is to analyse the pharmacological history of patients with idiopathic BPPV in relation to the risk of developing recurrence.

 

METHODS:

 

Data regarding 715 patients aged 12 to 87 years (62.7 ± 14) with non-traumatic BPPV were retrospectively evaluated. These refer to the Vestibular Service, day clinic, and were collected over a 4-year period, between 2014 and 2018.

 

RESULTS:

 

Recurrence of BPPV was observed in 220/715 patients (30.76%). A statistically significant correlation (p < 0.006) between recurrence and drug consumption was observed for SNC agents (p = 0.0001), vitamin D (p = 0.0005), PPI (p = 0.0007), thyroid hormones (p = 0.0011), and antihypertensives in single use (p = 0.0031). On the contrary, cholesterol-lowering statin drugs, hypoglycaemic agents, antiplatelet medication, estroprogestins and combination of two or more antihypertensives did not show significant correlation.

 

CONCLUSION:

 

Specific classes of drugs are significantly associated with recurrence: antihypertensive therapy with a singular agent, central nervous system agents, PPIs, vitamin D and thyroid hormones. On the other hand, the lack of correlation between some drugs and recurrence could be linked to the effectiveness of therapy in controlling hypertension, dyslipidaemia and diabetes. Pharmacological history is an essential tool to identify patients at risk of BPPV recurrence.

 

https://www.ncbi.nlm.nih.gov/pubmed/32078026

[[Le...]]

Hi i had just recently started tapering with lorazepam quick overnight change from klonopin. I have been suffering from vertigo episodes since last summer. The only thing that was helping was the klonopin for 3 months but i noticed a drastic change when switched to lorazepam. I have gotten MRI done to rule out other things. Came back normal. Hearing test due to tinnitus and muffled hearing but still normal. It feels like I'm wobbling all day and tremors don't help. My eyes are all over the place. Can't go outside alone anymore n had to quit my job. Saw ent doctors n now they're saying it's vestibular imbalance. I start physical therapy on March 9 hopefully they can help me. I don't know what else to do in the meantime. I'm always in bed.

[[La...]]

Hi i had just recently started tapering with lorazepam quick overnight change from klonopin. I have been suffering from vertigo episodes since last summer. The only thing that was helping was the klonopin for 3 months but i noticed a drastic change when switched to lorazepam. I have gotten MRI done to rule out other things. Came back normal. Hearing test due to tinnitus and muffled hearing but still normal. It feels like I'm wobbling all day and tremors don't help. My eyes are all over the place. Can't go outside alone anymore n had to quit my job. Saw ent doctors n now they're saying it's vestibular imbalance. I start physical therapy on March 9 hopefully they can help me. I don't know what else to do in the meantime. I'm always in bed.

 

Hi Letty93,

Thank you for sharing your story! I have so many questions for you. First of all, why did you make the switch from Klonopin to lorazepam? Did a doctor recommend that or did you request that change? If you were doing better on the Klonopin, why not switch back and see if that's a bit better for you? Ashton's method suggests going with a longer-acting benzo in order to taper, and in this case, it would be the Klonopin. Some people switch over to diazepam, though, so that could be another option. Are you actively tapering now, or are you keeping your dose steady for an indefinite period?

 

If the doctors you saw are calling your symptoms a "vestibular imbalance", then they've likely ruled out certain things. I'll be very interested to hear how your physical therapy goes in March, so I do hope you'll drop in and let us know. Vestibular Rehabilitation Therapy (VRT) can help with certain kinds of vestibular issues, and it's definitely worth a try for what you're experiencing. I'm guessing they'll suggest you try not to spend a lot of time lying down, since that can make certain things worse, not the least of which is  your muscular strength. Hopefully they can create a plan for you to keep you as strong and flexible as possible, since that will help you prevent falls and fractures. Maybe a cane or walker might be of use, as they can keep you more active, upright and safe.

 

I should say, though, that dizziness/disequilibrium is really common with benzos -- while on them, while coming off them and during the post-taper period. These meds are known as "vestibular suppressants", and they can interfere with "vestibular compensation", making it harder for balance to normalize. If you're in the midst of a taper, then you're going in the right direction as far as helping your body try to get better. Unfortunately, though, it's impossible to know how long it might go on.

 

I noticed you're taking another medication, so there can be interactions between the various meds. Have you asked your doctor or pharmacist about that? It might be playing a role in what's happening with your balance too.

 

Take good care, Letty.

[[Le...]]

Hi everybody!

I have balance problems too. Since tapering or I use two pillows instead of usually one I sleep better and seems to have a little more balance. I don't know if it is due to my taper (now at 50%) or the added pillow to sleep or both.

[[La...]]

Hi Leo,

As a matter of fact, I just posted an abstract (study summary) on "head-up sleep" and how it helps some people who are dizzy! I haven't tried it myself, but it's interesting to hear that you've been doing that and have found that it helps. My pillow is pretty much dead right now -- almost flat -- so maybe it's time for me to get a new one. 

 

If you want read that abstract I mentioned, it's just one page back -- page 691 of this thread. Have a look!

 

 

[[Jo...]]

Ugh. Happy to be tapering. But the last few days...soooo dizzy. Allergy season revving up just adds to it.....any suggestions? 

[[Le...]]

I never made it to PT due to everything shutting down from the corona virus. Things got overwhelming for me for weeks due to family n friend loss. I haven't tapered. My doctor says to stay put on 3 times a day with Ativan .50 mg until I'm ready n stabilize. My klonopin was stopped cold turkey by myself from not knowing what would happened doctor started me on Ativan n everything has gone down hill since.

[[La...]]

I never made it to PT due to everything shutting down from the corona virus. Things got overwhelming for me for weeks due to family n friend loss. I haven't tapered. My doctor says to stay put on 3 times a day with Ativan .50 mg until I'm ready n stabilize. My klonopin was stopped cold turkey by myself from not knowing what would happened doctor started me on Ativan n everything has gone down hill since.

 

Aw, Letty, just hang in there. It's a brutal, brutal situation for all of us. Just take care of yourself the best you can.

[[Le...]]

Not to sound so blunt but is diarrhea part of withdrawal. . I have digestion problem for 10 days now.  Everything I eat comes out but not normal.  Like the way I chewed it kinda like bits n pieces.  The doctor says it's probably part of it. Not really reassuring me. Gurgling sounds too. I was told I can't get checked out until corona virus dies out. So it's overwhelming to me.

[[La...]]

Not to sound so blunt but is diarrhea part of withdrawal. . I have digestion problem for 10 days now.  Everything I eat comes out but not normal.  Like the way I chewed it kinda like bits n pieces.  The doctor says it's probably part of it. Not really reassuring me. Gurgling sounds too. I was told I can't get checked out until corona virus dies out. So it's overwhelming to me.

 

Yes, lots of people have digestive issues during withdrawal. It could also be related to anxiety as well, and there seems to be LOTS of that during COVID-19. Just make sure you're getting enough water, sodium and potassium, because those things can be lost with diarrhea. You know your body best, so if there's something that's worked for you in the past for such problems, it would make sense to do that again. For me, I have to be as relaxed as possible during mealtimes and I have to chew well. If I'm wired during mealtimes, then my digestion suffers a lot. Could that be part of the issue for you too?

[[La...]]

Ugh. Happy to be tapering. But the last few days...soooo dizzy. Allergy season revving up just adds to it.....any suggestions? 

 

Are you taking allergy meds as well? Dizziness is a possible side effects of those meds too. Other than that, I'm not really sure. My dizziness seems to have a life of its own in terms of how bad it is on a given day. I have to sort of "go with the flow", since I can't control it.

[[Mi...]]

I actually had 2 vertigo attacks. Where I awoke in the middle of the night when just rolling over in bed. The entire room was spinning. I was extremely nauseous. I had Nystagmus (classic back & forth eye movement). This is BPPV (benign positional postural vertigo) I had to learn the Epley manuever on You Tube to find relief. After the attack, I had an "acute phase" of recovery of being in bed for about a week. About 2 months later 24/7 tinnitus started, and the occasional muffled feeling in my ears. I was then sick on and off for months with "the boaty feeling". This is a common vertigo disorder and anyone familair with what I went through will know what I'm talking about. I know this is a vestibular issue. BUT I had also been taking Ativan when all of this happened. I never had vestibular issues pre-Ativan. I am 10 months off of Ativan. I had the boaty feeling all the way until about a month ago. At month 9 I woke up thinking I was about to have another BPPV attack so i did the Epley, I was pretty dizzy for the entire month of February. It started to decrease over time, but I still felt dizzy in the shower. But, i will keep my fingers crossed & pray, the boaty feeling is gone! & showering is becoming normal! I think my vertigo issues came from Ativan tolerance & kindling. I did seek help, testing and an MRI (all normal) for my vertigo. No one ever questioned the Ativan. Not my family doctor who prescribed it, not my ENT, not my neurologist. I learned all on my own research how ototoxic benzos are. I even joined a pricey online program for my vertigo. It's a great group. It helped me through the thick of it. But, I really believe the Ativan is the culprit. I also believe most of the vertigo patients, who don't have a physical reason such as infection, injury, or physical abnormality causing their vertigo are most likely on a benzo, antidepressant, antipsychotic or some other ototoxic med. Anyone have a experience with vertigo and benzos ? Or any input?

[[Le...]]

Not to sound so blunt but is diarrhea part of withdrawal. . I have digestion problem for 10 days now.  Everything I eat comes out but not normal.  Like the way I chewed it kinda like bits n pieces.  The doctor says it's probably part of it. Not really reassuring me. Gurgling sounds too. I was told I can't get checked out until corona virus dies out. So it's overwhelming to me.

 

Yes, lots of people have digestive issues during withdrawal. It could also be related to anxiety as well, and there seems to be LOTS of that during COVID-19. Just make sure you're getting enough water, sodium and potassium, because those things can be lost with diarrhea. You know your body best, so if there's something that's worked for you in the past for such problems, it would make sense to do that again. For me, I have to be as relaxed as possible during mealtimes and I have to chew well. If I'm wired during mealtimes, then my digestion suffers a lot. Could that be part of the issue for you too?

[[Le...]]

I am drinking plenty of water. Coconut water also wich has potassium in it n electrolytes. But it still doesn't help this situation. I know my nerves are bad due to stress n anxiety. I just hope is not something else cuz im scared to eat nowadays.

[[La...]]

I am drinking plenty of water. Coconut water also wich has potassium in it n electrolytes. But it still doesn't help this situation. I know my nerves are bad due to stress n anxiety. I just hope is not something else cuz im scared to eat nowadays.

 

Well, the stress levels are undoubtedly high for everyone. My digestion has been affected too for the last few days. I'm sure it's anxiety, so I'm not overly concerned. We need good nutrition, water, etc.

[[La...]]

Hi Dizzy Buddies,

It's been awhile since I've had a study on Mal de Debarquement Syndrome to share, but I just came across one today. MdDS includes symptoms of rocking, swaying and bobbing, much like the ones that most of us complain about. However, MdDS is usually acquired through travel, e.g. boat, air, car. It's considered rather rare, and indeed, in this case study, the authors mention that they hadn't seen it before and weren't familiar with it. The 20-year-old woman who was afflicted underwent extensive testing, but pretty much all of the test results were normal.

 

Guess what treatment she was given? Benzodiazepines! Omigosh! Clonzepam .5mg x 2 per day. It doesn't say how long she stayed on the medication, but it does say that she got better.

 

I'll post the link to full paper here, followed by the abstract and introduction, if you'd like to have a look:

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7051124/pdf/cureus-0012-00000006837.pdf 

 

 

Abstract

 

Mal de debarquement syndrome (MdDS) is a bizarre sensation of continued movement after the termination of motion. It is accompanied by disequilibrium, usually experienced after voyage or travel, however, it is not associated with vertigo. Although most cases resolve spontaneously,middle-aged women sometimes particularly experience protracted symptoms following an ocean cruise, with the persistence of symptoms for many years. We present the case of a young female with no known comorbidities who was misdiagnosed quite a few times before the actual diagnosis of this rare disease was established.

 

 

 

Introduction

 

Mal de debarquement syndrome (MdDS) is a one-of-its-kind illness characterized by unsteadiness without dizziness, which can persist for months or sometimes even years. The term Mal de Débarquement in French stands for "sickness of disembarkment". It is a diagnosis of exclusion, based on characteristic history and normal neurologic and otorhinolaryngology(ENT) clinical examination, however, nystagmus can also be observed [1]. It is a continuous sensation of rocking and swaying after a period of travel such as by ship, plane or car [2]. The symptoms often resolve spontaneously after a few days but in some cases, they can persist for a prolonged and unpredictable duration leaving a patient in the debilitated state with significant impairment in quality-of-life (QoL). Since the diagnosis remains clinical, testing is useful only in helping to exclude other disorders that might present with features similar to MdDS [3]. We present a case of a 20-year-old woman who came for the evaluation of frequent episodes of the persistent sensation of imbalance for the previous one and a half years. She was diagnosed as a case of MdDS based on typical history and relevant examination and investigations. She was started on low dose benzodiazepines which yielded relief from her symptoms. The patient was carefully followed up for six months and has been symptom-free thereafter.

[[Le...]]

That's what i was taken klonopin last year because it helped me walk without holding on to anything or any vertigo for months. I just didn't know what they were. I started back on Ativan cuz i stopped klonopin cold turkey n that's when all hell broke loose. My doctor says he'll put me on them once i taper from Ativan but I'm scared now after the withdrawal hell I've been on since November. I just never knew what they were n stopped n got switched. N he wasn't benzo smart either even though it was 2 doctors i worked with.