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

[[La...]]

Hi Hopeful-One,

I'm sorry you're struggling with this symptom too. It's debilitating, so I know what you're talking about it. In my case, no one can see any rocking from the outside, but I'm stumbling around and having much difficulty doing basic things. I've been using a walker for quite some time, and I suggest you might want to do the same, if you think it might help. I sustained a foot fracture in late 2017 from my dizziness, so that has affected me quite a bit. The walker provides stability when walking, which is essential in my case. I'm doing exercises to stay mobile too.

 

Anyway, as far as the studies go, the most relevant for us are the ones about Mal de Debarquement Syndrome, whose symptoms are pretty much the same as those that many of us describe around here. There were at least five papers on this topic in 2018 that were posted here. In NYC, there's a treatment centre where they've had some success with a treatment for MdDS -- in particular, for those whose symptoms are "motion-triggered", e.g. a cruise or other mode of travel. The "sponanteous-onset" or "other-onset" type of MdDS symptoms don't seem to have been solved as well with the treatment, from what I could glean. In any case, it's good that people are studying it. One of the studies noted that people get some help from...wait for it....benzos and SSRIs, but it seems the meds help with the anxiety and depression that the dizziness/disequilibrium causes, as opposed to helping the dizziness itself. My question is, of course, are the meds these people are taking part of the problem, rather than part of the solution??

 

I'll continue to post other relevant studies. abcd posted a few of those interesting MdDS too, and I encourage everyone else to share info that they come across that might be useful to us here.

 

In the meantime, take care, Hopeful-One, and I wish you a better 2019! I wish that for everyone here. May it be a year of healing for all!

[[Ho...]]

Hi Hopeful-One,

I'm sorry you're struggling with this symptom too. It's debilitating, so I know what you're talking about it. In my case, no one can see any rocking from the outside, but I'm stumbling around and having much difficulty doing basic things. I've been using a walker for quite some time, and I suggest you might want to do the same, if you think it might help. I sustained a foot fracture in late 2017 from my dizziness, so that has affected me quite a bit. The walker provides stability when walking, which is essential in my case. I'm doing exercises to stay mobile too.

 

Anyway, as far as the studies go, the most relevant for us are the ones about Mal de Debarquement Syndrome, whose symptoms are pretty much the same as those that many of us describe around here. There were at least five papers on this topic in 2018 that were posted here. In NYC, there's a treatment centre where they've had some success with a treatment for MdDS -- in particular, for those whose symptoms are "motion-triggered", e.g. a cruise or other mode of travel. The "sponanteous-onset" or "other-onset" type of MdDS symptoms don't seem to have been solved as well with the treatment, from what I could glean. In any case, it's good that people are studying it. One of the studies noted that people get some help from...wait for it....benzos and SSRIs, but it seems the meds help with the anxiety and depression that the dizziness/disequilibrium causes, as opposed to helping the dizziness itself. My question is, of course, are the meds these people are taking part of the problem, rather than part of the solution??

 

I'll continue to post other relevant studies. abcd posted a few of those interesting MdDS too, and I encourage everyone else to share info that they come across that might be useful to us here.

 

In the meantime, take care, Hopeful-One, and I wish you a better 2019! I wish that for everyone here. May it be a year of healing for all!

 

Thanks for filling me in! When I first started researching this in 2013 I saw it was treated with benzos, and recently my surgeon said, "Well if it started when you got off the drug and it's treated with benzos, why not go back on?" I am SO frustrated at the medical communities lack of knowledge. Why on earth would I go back on a drug that caused such misery? I am glad someone is keeping up with the research (thank you again!) but so sorry there is not more of a solution. I guess we all need to continue on our path using the resilience and courage we've gotten this far with, and know our bodies will find resolution in time.

 

In regards to the walker; interestingly enough I do not have the boaty feeling below my waist. Sometimes the pushing in my upper body is violent and will push me to the side but never to the degree I would fall ect. I am able to maneuver in my catering kitchen and even manage a treadmill; for that I am thankful. The feelings I have are as if someone if grabbing my neck and thrusting my head about, violent bursts. I also have a swaying in my upper torso.

 

I pray we all find a measure of relief in 2019, many of us have been at this way to long!

[[La...]]

That's so interesting, Hopeful-One! I haven't heard of the dizziness being just an above-the-waist experience. You're lucky that you can walk and get around okay. It's completely debilitating not to be able to walk. For me, the fracture was a huge blow both physically and psychologically. The fear is always there. But yes, courage and resilience are key in getting through this thing.

 

I agree with you regarding the apparent lack of knowledge on the part of many health professionals when it comes to benzos. They're known as "vestibular suppressants" in the medical literature, including the ENT textbooks, a section of which I copied out and shared with my doctor some time ago. It was written in plain ink...."Benzodiazepines are vestibular suppressants and are not meant for long-term use. They can interfere with the process of vestibular compensation..." (or thereabouts)

 

Both benzos and SSRIs include dizziness as side effects near the top of their lists of such things. It makes no sense to me to take one of them for a long-term balance issue. The info I mentioned, though, comes from a survey of what people take. It doesn't say that those meds are suggested for dizziness, only that people take them to deal with the anxiety that arises from it, it seems.

[[La...]]

Hi Dizzy Buddies,

How's it going? Are you hanging in/hanging on? I really hope so. It's been a bit of wild ride for me lately, but today has been a bit better -- thank goodness. It's a one-day-at-a-time sort of thing.

 

I've been checking out the vestibular studies, and I came across this on the subject of vestibular rehabilitation for PPPD. Have a look:

 

"Vestibular Rehabilitation Therapy Outcomes in Patients With Persistent Postural-Perceptual Dizziness"

Abstract

 

OBJECTIVES::

 

Persistent postural-perceptual dizziness (PPPD) represents an important category of vertigo. Medical treatment and psychotherapy provide convenient control of symptoms. However, these management strategies can have inconvenient side effects and short-term relief, respectively. Vestibular rehabilitation therapy (VRT) is a self-conducted habituation program that can be personalized to the subject's needs to give adequate symptom relief without side effects. The present study aims to test the effect of VRT on patients with PPPD.

 

METHODS::

 

Participants were diagnosed as having PPPD by the exclusion of organic vestibular lesions. The study involved 2 groups with PPPD: Group I, treated with the VRT, and Group II, treated with the VRT plus placebo. The Dizziness Handicap Inventory (DHI), a self-assessment scale, was used to evaluate the VRT outcomes.

 

RESULTS::

 

There was a significant decrease in functional, physical, and total scores on the DHI in both groups after VRT. Adding the placebo did not have supplementary outcomes. The patients who did not benefit from the VRT had a significantly longer duration of PPPD, more complex aggravating factors, more composite VRT exercises, and a higher DHI score than the patients who benefited from VRT.

 

CONCLUSIONS::

 

Customized VRT adequately reduced symptoms and improved quality of life in subjects with PPPD.

 

https://www.ncbi.nlm.nih.gov/pubmed/30607985

[[La...]]

Hello Dizzy Buddies!

It's been rather quiet around here as of late. I hope everyone is hanging in there and staying upright.

 

I've got a very upbeat study to share here, so please have a look at it. It really reflects how amazing the recuperative capacity of the human body -- in this case, brain -- is.

 

Adult neurogenesis promotes balance recovery after vestibular loss

Tighilet B1, Chabbert C2.

 

Author information

 

1

    Aix Marseille Université-CNRS, Laboratoire de Neurosciences Sensorielles et Cognitives, LNSC UMR 7260, Equipe Physiopathologie et Thérapie des Désordres Vestibulaires, Marseille, France. Electronic address: brahim.tighilet@univ-amu.fr.

2

    Aix Marseille Université-CNRS, Laboratoire de Neurosciences Sensorielles et Cognitives, LNSC UMR 7260, Equipe Physiopathologie et Thérapie des Désordres Vestibulaires, Marseille, France.

 

Abstract

 

A phenomenon called vestibular compensation occurs after peripheral vestibular loss. This process involves a mosaic of profound structural rearrangements within the vestibular nuclei. Among them, adult reactive neurogenesis is perhaps the most unexpected, as it occurs in a brain area that was never reported as neurogenic before. Both the survival and functionality of this newly generated neuronal network depend on its integration into preexisting networks in the deafferented structure. Far from being aberrant, this organization allows the brain to use inputs from other sensory modalities to facilitate the restoration of posture and equilibrium. This is the best example so far of the reparative role of adult neurogenesis. Recent findings show that a similar phenomenon exists in other brain sensory structures, such as auditory brain stem nuclei and sensory motor cortex. This raises questions about the putative functional relevance of the reactive neurogenesis.

 

https://www.ncbi.nlm.nih.gov/pubmed/30658127

[[No...]]

Jumping in here, I've had horrible dizziness and lightheaded feeling for 5 days now. Not been able to drive. I was diagnosed with Labrynthitis 18 months ago after a virus that affected my balance for 10 days. I mainly have dizziness at night when I lay down in bed. It's currently during the day too, but a fuzzy headed feeling. I also have tinnitus and ear pressure fullness.

 

No further tests have been carried out by my GP. I've asked about vestibular rehabilitation but as I live in the UK and NHS waiting lists are long I have a potential wait of one year to be seen by a specialist. I was offered more drugs by my GP but have declined as am allergic to anti sickness meds and want my body to try and adjust naturally, if that makes sense?

 

So, I'm not sure if my symptoms are caused by Labrynthitis or WD ....

 

Meanwhile I enjoy the good days and try and get through the bad ones best I can.

[[La...]]

Hi NoMorePills,

Dizziness is extremely common while taking benzos and antidepressants, as well as during and after withdrawing from them. Have you checked out the first few pages of this thread? If not, you may want to have a look at them, since I put up a number of useful links there. The first page includes descriptions written by other BBs about how their dizziness feels. It's often a floaty-boaty, push-pull, off-kilter kind of sensation, but others have been reported as well.

 

Unfortunately, there's no quick fix. Vestibular rehabilitation is useful in some cases of dizziness, and it might be worthwhile to get a private assessment (e.g. VRT physiotherapist) if you think your NHS waiting list there is too long. In my case, it wasn't helpful, although I spent quite a bit of time trying it. Everyone is different, though. I agree that more medications may not be helpful, and, on the contrary, might actually make things worse, i.e. if it's a benzo or antidepressant-caused type of dizziness. Please do take care with regards to driving and getting around.

 

The thing with dizziness is that it can have many causes. If you're not sure at this point what the cause is, then it would make sense to have it thoroughly checked out by medical professionals. If you're quite sure it's the medication, then it's a matter of being patient with this difficult withdrawal symptom which, like the other withdrawal symptoms, should hopefully resolve over time. We're here trying to support each other as we make our way through it.

 

Bear in mind, though, that the medications themselves can cause dizziness, and it's in all of the medical literature on this topic. Medical professionals should all be aware of that. Dizziness is one of the most common side effects of all psychiatric meds.

[[No...]]

Thanks for all that info Lapis2. I'm almost certain that my symptoms have been caused by the medication. My Labrynthitis possibly by extreme stress after a close family member passed away. Hopefully it will all pass in time ...

[[La...]]

Yes, exactly!

[[La...]]

Hi Dizzy Buds,

I've posted a few studies on this topic before, but I just came across another today that I thought I'd share. It looks at some of the neurotransmitters that are involved in the vestibular system, and they include GABA, glutamate and glycine. So, as we know, benzos and other psychiatric meds can affect these neurotransmitters, which is why our balance can be affected when we take such meds.

 

Depolarization-induced release of amino acids from the vestibular nuclear complex

 

Godfrey DA1, Sun Y, Frisch C, Godfrey MA, Rubin AM.

 

Author information

 

1

    Department of Neurology, University of Toledo College of Medicine, 3000 Arlington Avenue, Toledo, OH 43614, USA. donald.godfrey@utoledo.edu

 

Abstract

 

There is evidence from immunohistochemistry, quantitative microchemistry, and pharmacology for several amino acids as neurotransmitters in the vestibular nuclear complex (VNC), including glutamate, γ-aminobutyrate (GABA), and glycine. However, evidence from measurements of release has been limited. The purpose of this study was to measure depolarization-stimulated calcium-dependent release of amino acids from the VNC in brain slices. Coronal slices containing predominantly the VNC were prepared from rats and perfused with artificial cerebrospinal fluid (ACSF) in an interface chamber. Fluid was collected from the chamber just downstream from the VNC using a microsiphon. Depolarization was induced by 50 mM potassium in either control calcium and magnesium concentrations or reduced calcium and elevated magnesium. Amino acid concentrations in effluent fluid were measured by high performance liquid chromatography. Glutamate release increased fivefold during depolarization in control calcium concentration and twofold in low calcium/high magnesium. These same ratios were 6 and 1.5 for GABA, 2 and 1.3 for glycine, and 2 and 1.5 for aspartate. Differences between release in control and low calcium/high magnesium ACSF were statistically significant for glutamate, GABA, and glycine. Glutamine release decreased during and after depolarization, and taurine release slowly increased. No evidence for calcium-dependent release was found for serine, glutamine, alanine, threonine, arginine, taurine, or tyrosine. Our results support glutamate and GABA as major neurotransmitters in the VNC. They also support glycine as a neurotransmitter and some function for taurine.

 

https://www.ncbi.nlm.nih.gov/pubmed/22147284

 

[[...]]

Just reading this thread re a PoNS device (Portable Neuromodulation Stimulator) approved in Canada.  Crazy expensive, anyone got a spare $30K lying around?  But worth the read, perhaps they're looking for volunteers for clinical trials, now there's a thought.

http://www.benzobuddies.org/forum/index.php?topic=217186.0

 

Seems Montel Williams has a stake in it too.

 

Montreal clinic's tongue tickler approved by Health Canada to treat brain injuries

https://montreal.ctvnews.ca/montreal-clinic-s-tongue-tickler-approved-by-health-canada-to-treat-brain-injuries-1.4208136

 

 

And for our resident scholar, Dizzy Dame Lapis here's one full study, it doesn't seem as if they've published very many at this stage of the game.  If nothing else, it couldn't hurt to try and practice their specific exercises.

 

Cranial nerve non-invasive neuromodulation improves gait and balance in stroke survivors: A pilot randomised controlled trial

https://sci-hub.tw/https://doi.org/10.1016/j.brs.2017.08.011

 

Hoping everyone's having an okayish evening. 

[[La...]]

Thanks for sharing that info about the PoNS, abcd! I'm doing a bit more reading on that....just to see. I read Dr. Doidge's first book two times. The first chapter was about a woman whose balance was completely knocked out by gentamicin, an antibiotic. She felt like she was falling even when she'd already fallen down. And that PoNS helped her. Pretty amazing story!

[[Me...]]

HI I’m new to the group I came across your dizziness group and now I don’t feel sooooo scared although I’m very very frustrated! I literally am laying down all day because I’m super lightheaded dizzy all day long!! ALL DAY LONG! If I get up and walk around my blood pressure shoots up and my heart beat too! I seriously feel like I had a stroke or something! Although a mri says no stroke! I had my baby 3 months ago! Not thinking the epidural would effect me it did!! And now I been severely dizzy lightheaded for three months! Along with blood sugar problems now! I’m back in acute after c/t 2 mg Ativan almost 15 months ago! 😭

[[La...]]

Hi Mendozac,

For sure, dizziness is really common. I'm just wondering, though...have you had everything checked out, e.g. re lightheadedness, heart rate, blood pressure and blood sugar? It's best to be sure -- especially since you just had a baby. Another BB I know definitely had issues with increased heart rate and bp upon standing, and it eventually went away, so it may be a benzo thing. Still, though, it's definitely worth having everything checked out by a doctor.

[[Me...]]

Hi Lapis2

 

Well i been to the er 6x had ct on chest and head nothing

Had echo done on heart again nothing

Just had mri done again nothing

Im scared i had like a medulla stroke or something serious and their missing it i seriously use one eye right now

 

[[La...]]

Hi Mendozac,

I'm glad to hear that you've had all those things checked out and that nothing is showing up. Good news! Yet, still, the symptoms can be scary, that's for sure. Can you try to sit up a bit more? Lying down for long periods of time can make it harder to recover, so even if you can sit up and just be vertical, that's probably better than lying down the whole time. Have you considered getting a walker to help you stay safe while moving around? Falling is just not an option here, so do whatever you can to stay mobile and strong, yet still safe.

 

As I mentioned, I have a good pal through BB who had some similar symptoms to you, and they eventually settled down.

 

Do you have help taking care of the baby? I hope so. That must be a huge challenge to deal with. Are you eating okay? Drinking enough water? Getting enough sodium, potassium, etc.?

 

 

[[Me...]]

I have 8 kids!!! Best husband!!! What can i eat with sodium!!!

[[Me...]]

Im terrified that the epidural really messed this up more or that ima have a stroke any minute

[[...]]

Im terrified that the epidural really messed this up more or that ima have a stroke any minute

 

Hey Mendoz, just a thought.  Have you been checked out for a spinal fluid leak?  Apparently, it's not uncommon after an epidural and it does fit the symptoms you're describing, i.e. increased blood pressure and heart rate, dizzy, lightheaded, etc.  It may not always show up on an MRI but would almost certainly show up on a CT myelogram.

[[La...]]

Eight kids??!! Wowza! Okay, so I hope the older ones are helping with the younger ones! And yay for the good husband!

 

Sodium is usually too high in most packaged foods, but I'm not sure what you're eating. It's a necessary electrolyte, along with potassium, calcium, magnesium and a couple other things. If you've had a recent blood test and everything checks out okay, then you're probably fine. But if they're out of whack, you can feel lightheaded and dizzy.

 

That's the thing with dizziness...there are many causes. That's why I was suggesting that you get things checked out. But if you've had lots of testing already, and you're pretty sure it's the medication, then it's usually a matter of time and patience.

[[Me...]]

I was thinking of the spinal leak also but scared to add on to the mess im scared for a stroke cause honestly thats what it feels like...like maybe it messed with the medulla tremendously!

[[...]]

It seems a little odd how they'd put you through all those other tests and yet not check for perhaps the most obvious cause.  If it were me, I'd try and psych myself up and get the CT myelogram done.  If it is a CSF leak, the great part about it is they can patch it up and, fingers crossed, you'll be as good as new.

 

Belated congrats on the new baby, by the way!

[[No...]]

Hi everyone

I’m new to this support group.  I am posting on my daughters page as she has sensitivity to technology and can’t look at the screens. 

My daughter has lived with vestibular migraines for about ten years but she says she has never experienced anything this severe before.

She has been describing her symptoms to me so I will try to convey them here she experiences severe vertigo while she sleeps at night every 30 to 60 minutes when she opens her eyes the vertigo sometimes stops.  If she sleeps thru it long enough, it will continue with her eyes open.  She describes a “weird brain sensation” almost as if a whooshing or tingling and this continues throughout the night. Her balance is considerably worse during the day as a result of the night vertigo. The symptoms have been increasing in intensity each day.  She also gets tinnitus, rocking,boatiness and swaying and what feels like a heartbeat in her vision. 

My daughter is trying to remain positive and says that her brain is trying to heal but I also know she is very worried that this is something other than Benzo withdrawal bc of her history.  My hope of coming here is to gain reassurance from others who may have experienced these symptoms.  Thank you very much

[[La...]]

Hi NoMoreBenzoGirl!

Thanks for dropping in. I just wanted to ask a few questions, if that's okay. Has your daughter been checked out since these new symptoms started? When you say "vertigo", are you referring to spinning sensations, or the rocking, swaying motion you describe later? I ask because there's a type of vertigo (spinning) that's usually easily treated called "Benign Paroxysmal Positional Vertigo", and if that's what she has, then it's important to seek out treatment. Is there a doctor following her for "vestibular migraine"? If so, what did s/he say?

 

If the two of you are pretty sure that the symptoms are related to the medication, then it's a matter of patience. It's important to try to stay as mobile as possible, i.e. not lying down all the time, since the weaker one is, the harder it is to move around. The vestibular system needs to be challenged (like bones and muscles do) in order to stay functional. One can do exercises in lying or sitting, as well as using a walker or cane, as needed, to stay mobile around the house. Some of us are getting help through physiotherapy -- either to try vestibular rehabilitation or to get help with exercises and related issues.

 

Dizziness is a really common symptom while on the meds, as well as while coming off them and during the post-taper period. How long it lasts for each person is totally unpredictable, though. It's like the other benzo withdrawal symptoms. My best suggestion is to make sure you get appropriate medical checks to ensure that there's nothing else going on that could or should be treated, since dizziness can be a symptom of many illnesses. Otherwise, patience is the name of the game!

[[Me...]]

I’m in believe that the epidural messed with my brain stem or them a Medulla!  And that’s why am so lightheaded and dizziness  i’m so scared that ima  have a stroke or something does the medulla or the brain stem heal