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

[[La...]]

Hi Caltn,

I assume you meant that you hope it's NOT permanent, right? And yes, dizziness and tinnitus are quite common with benzos -- while taking them, and after getting off them. I can't speak much about the hearing changes, since they may be a result of the tinnitus or they may be something else. An appt with an ENT is a very good idea, just to see what's what. Many of us around here have had vestibular and hearing tests too. I have tinnitus as well, but my hearing is still very good.

 

If you do go, please let us know how it goes.

[[ca...]]

Hi Caltn,

I assume you meant that you hope it's NOT permanent, right? And yes, dizziness and tinnitus are quite common with benzos -- while taking them, and after getting off them. I can't speak much about the hearing changes, since they may be a result of the tinnitus or they may be something else. An appt with an ENT is a very good idea, just to see what's what. Many of us around here have had vestibular and hearing tests too. I have tinnitus as well, but my hearing is still very good.

 

If you do go, please let us know how it goes.

 

Hi

 

Sounds like all this feeling off balance and Tinnitus is all withdrawal related. What bothered me is she said  I have a permanent hearing lose  in my left ear.

[[La...]]

That should definitely be checked out by an ENT. S/he would be able to weigh in on that. I might add that losing the high frequencies of hearing is somewhat common with age, so that's another possibility, depending on how old you are.

[[Jo...]]

Anyone EVER get cured? What's the cure rate in here?

[[La...]]

Hi Joy,

Yes, people do get better. However, it's impossible for anyone to give out stats around here. People come and go, just as they do everywhere on BB.

 

 

[[Ki...]]

Hi Lapis

Dropping in to say hello

Not well yet

Dizziness and rocking sensation still there

Very sensitive to light sound and cant walk much. Just few steps

Just wanted to say hello

How are you doing

[[La...]]

Wow! Kirkhero! Long time no see!

 

I guess we're in the same boat (!) as far as still being dizzy. I don't have those light or sound issues like you do, but I broke a bone in my foot last fall due to dizziness, and it's still really sore. It IS healing slowly, but it has made my life almost impossible to manage. Such a painful year.

 

Anyway, please take good care and keep trying to walk, even if it's just a little bit. It's important.

 

 

[[Ki...]]

So sorry to hear Lapis

Yes I was not feeling upto it to read so rarely visited.

Hope u are healing better

Will try to visit more often

Cant read much at the moment.

Have a good weekend

[[La...]]

Hi,

If any dizzy buddies are checking in around here, I'm sharing a link to an abstract on Mal de Debarquement Syndrome, which has symptoms similar to ours. Our pal abcd shared a few studies on this topic awhile back, and one of them referred to the possible effect of gonadal hormones, especially in the case of women, since women seem to be predominantly affected by these types of symptoms (whether motion-triggered or spontaneously/otherwise-triggered).

 

A few of the same researchers involved in that previous study have put out a paper referring once again to hormones, but also to GABA and serotonin. Interesting! Here's the link to the abstract:

 

https://www.ncbi.nlm.nih.gov/pubmed/30220332 

 

I hope everyone is hanging in there. I haven't been posting much about my dizziness, which continues to be there from a 6 to a 9 out of 10 level. Hormones? GABA? Serotonin? Probably. It's a wild ride. 

 

 

 

 

[[La...]]

And here's one called "Non-drug therapy of vertigo":

 

https://www.ncbi.nlm.nih.gov/pubmed/30251976

[[La...]]

And if our pal IrishMonkey or anyone else with a diagnosis of PPPD for their dizziness is checking in here, there's a recent study called "Persistent Postural-Perceptual Dizziness-A Systematic Review of the Literature for the Balance Specialist":

 

https://www.ncbi.nlm.nih.gov/pubmed/30289841

 

Here's an excerpt:

 

RESULTS:  From 318 articles, 15 were selected for full analysis with respect to PPPD. Most were case-control studies, with one consensus paper from the Bárány Society available. Overall, the pathophysiology of PPPD remains relatively poorly understood, but is likely to be a maladaptive state to a variety of insults, including vestibular dysfunction and not a structural or psychiatric one. Cognitive behavioral therapy, vestibular rehabilitation, selective serotonin uptake inhibitors (SSRIs), and serotonin-norepinephrine reuptake inhibitors (SNRIs) all seem to have a role in its management.

 

It's good to see they're not pinning it on psychiatric causes.

 

[[...]]

Just saying Hi, Lapsy, and everyone else. 

Sandra/Kirk, nice to see you drop by, but I'm so sorry you're still struggling. 

I'm still playing catch-up, will come back to check out those studies you dropped off, Lap.  They say it's not likely psychiatric in origin and yet they prescribe SSRI/SNRIs for it.  Typical.

Otherwise just same old, same old, here as well.  Living the dream.  

 

[[La...]]

Nice one, Ms. Alphabet Lady! Good to see you around these parts. I hope you're doing okay-ish and hanging in there and that sort of thing.

 

Yes, I know re: SSRIs for PPPD. Sometimes they prescribe those meds for "off-label" uses. I was prescribed Cymbalta for neuropathic pain and ended up with wicked diarrhea, tinnitus, dizziness and, eventually, brain zaps. Yup, a lovely smorgasbord of side effects. And it never helped with the pain. I only last a few weeks on that stuff before I had to taper off it. Really icky experience.

 

I printed out the other abstract, though,i.e. the one that mentions gonadal hormones, GABA and serotonin. And I just tracked down the full study here (in tiny print, unfortunately!):

 

https://www.researchgate.net/publication/327290256_A_New_Theory_on_GABA_and_Calcitonin_Gene-Related_Peptide_Involvement_in_MdDS_Predisposition_Factors_and_Pathophysiology 

[[Ko...]]

Hi Dizzy Buddies,

 

Just checking in at my 59th month. I’m was glad to read Mr B’s report about finally getting better at 12 yrs.  I like him have had a set back this week.  I feel like I back at the beginning with my balance getting worse and the stinging skin on my legs has now spread to my whole body.  Also new is pain in my legs and feet.  It feels like my bones are hurting. It’s not just the skin but the whole lower leg and feet.  It makes it difficult to sleep or do anything really. It’s almost as if I’m starting all over. Just a week ago I was feeling good about my progress. Today I feel depressed with no hope, even feeling like getting back on a Benzo again - anything to relieve the pain. So when I read that this happened to Mr B it has given me some hope again. I started tapering when I was 67 now I’m 73 and I pray that I won’t have to go through this for another 5 years.

 

I did call a neurosurgeon about brain stem surgery, but he won’t see me unless I have a diagnosis. The two neurologists I saw couldn’t find anything wrong. One suggested taking a Benzo again!?

I just wish someone would do some research on this. There are so many of us suffering.

 

Korbe

 

 

[[La...]]

Hi Korbe,

Sorry I'm a bit late in responding to your post. It's good to hear from you again, but I'm so sorry to hear how much you're struggling. Me too, actually, so I understand. As far as pain in your legs and feet goes, do you think it's from trying not to fall? I've been dealing with that issue for a very long time. Of course, it's best to get it checked out, since there could be bony issues going on, i.e. not related to your dizziness or benzo withdrawal. As we age -- especially women -- we can have various issues with our bones, so it might be worth getting that assessed, if you haven't done so already.

 

Thanks for the update regarding the neurosurgeon. How do you feel about that?

 

There IS research going on, by the way, as per some of the recent studies abcd posted. I just posted a few more too. Mal de Debarquement is a syndrome whose symptoms are very, very similar to what many of us are experiencing, so the research on the non-motion-triggered type of MdDS might actually prove useful to us. I just read the most recent study (out in November, actually) on this syndrome, and it's questioning the role of hormonal changes (in particular, in women), as well as GABA and a substance called Calcitonin Gene-Related Peptide. It's all hypothetical at this point, but suffice to say, there ARE researchers interested in understanding what the causes of such symptoms might be. It's pretty interesting to see GABA mentioned, since it plays a major role in balance. Other neurotransmitters do as well, including serotonin, which is also mentioned in the paper.

 

Anyway, do take care, Korbe, and please stay in touch.

 

 

 

[[La...]]

Hey Dizzy Buddies,

This study is pretty interesting. Check the title:

 

"Cooperation of the vestibular and cerebellar networks in anxiety disorders and depression"

 

Suffice to say, if you're anxious and/or depressed when you're dizzy, there's likely a neurological reason for that. Have a look at the abstract below:

 

 

The discipline of affective neuroscience is concerned with the neural bases of emotion and mood. The past decades have witnessed an explosion of research in affective neuroscience, increasing our knowledge of the brain areas involved in fear and anxiety. Besides the brain areas that are classically associated with emotional reactivity, accumulating evidence indicates that both the vestibular and cerebellar systems are involved not only in motor coordination but also influence both cognition and emotional regulation in humans and animal models. The cerebellar and the vestibular systems show the reciprocal connection with a myriad of anxiety and fear brain areas. Perception anticipation and action are also major centers of interest in cognitive neurosciences. The cerebellum is crucial for the development of an internal model of action and the vestibular system is relevant for perception, gravity-related balance, navigation and motor decision-making. Furthermore, there are close relationships between these two systems. With regard to the cooperation between the vestibular and cerebellar systems for the elaboration and the coordination of emotional cognitive and visceral responses, we propose that altering the function of one of the systems could provoke internal model disturbances and, as a result, anxiety disorders followed potentially with depressive states.

 

https://www.ncbi.nlm.nih.gov/pubmed/30292730

[[Th...]]

Thanks about sharing Lapis! 👍👍👍

 

I noticed that motor coordination is imacted as well. I wonder if my poor fine motor skills in my hands are poor because of this. Well, it is one theory at least but I do not know if anyone else here in BB has issue with fine motor skills. T.

[[La...]]

Hi Thomas,

My legs and feet are very much affected, but not my hands. Is it just your hands? Not your legs and feet? Obviously, our legs and feet are very much involved in walking, standing and sitting, so it's almost inevitable that they're affected by balance issues. However, hands aren't usually part of the picture. Having said that, benzos can affect many central nervous system functions, so that might be what's going on for you. Is it something that you've seen a doctor about?

[[La...]]

Here's another study to check out. This one's called "The balance of sleep: Role of the vestibular sensory system". How is everyone sleeping these days? Me? Very, very badly.

 

Abstract

 

The vestibular system encodes linear and angular head motion supporting numerous functions from gaze stabilization and postural control, to high-level cortical functions involving spatial cognition, including self-body perception, verticality perception, orientation, navigation and spatial memory. At the brainstem and mesencephalic levels, the vestibular organs also influence postural blood pressure regulation, bone density and muscle composition via specific vestibulo-sympathetic efferences and have been shown to act as a powerful synchronizer of circadian rhythms. Here, we review the evidence that sleep deprivation and sleep apnea syndrome alter vestibular-related oculo-motor and postural control, and that, in turn, vestibular pathologies induce sleep disturbances. We suggest that sleep-related neuroplasticity might serve the adaptation and compensation processes following vestibular lesions in patients. Interestingly, a reciprocal neuroanatomical route between the vestibular nuclei and the orexinergic neurons has been reported. While orexinergic modulation of the vestibular nuclei related to postural control has been suggested, we postulate that vestibular inputs might in turn influence the sleep-wake state switch, informing the brain about the daily quantity of motion.

 

https://www.ncbi.nlm.nih.gov/pubmed/30293919

[[of...]]

Following.... PPPD is often treated with anti depressants. I’ve had boaty sensation since I first went off klonopin and Zoloft back in 1994. It’s been one of my worst symptoms. Most the time would be alleviated by gong back on something. Obviously a vicious cycle.

[[Th...]]

Hi Thomas,

My legs and feet are very much affected, but not my hands. Is it just your hands? Not your legs and feet? Obviously, our legs and feet are very much involved in walking, standing and sitting, so it's almost inevitable that they're affected by balance issues. However, hands aren't usually part of the picture. Having said that, benzos can affect many central nervous system functions, so that might be what's going on for you. Is it something that you've seen a doctor about?

 

 

Thanks about reply Lapis! Yes I have seen my neurologist because of it. He does not know what is causing it. He ordered bulk of blood tests, EMG and did hies own analysis. I will meet him end of next week and we will discuss about altrnatives. Doctors seem not to to be benzo knowledgeable which is not a news. Well, I need probably wait and see if this develops - hopefully it will be better but who knows.

[[La...]]

Following.... PPPD is often treated with anti depressants. I’ve had boaty sensation since I first went off klonopin and Zoloft back in 1994. It’s been one of my worst symptoms. Most the time would be alleviated by gong back on something. Obviously a vicious cycle.

 

Both benzos and antidepressants have a massive list of possible side effects and withdrawal effects, including dizziness. It just doesn't make sense to me to give a dizzy person either of these meds, but then logic doesn't always reign here. If either of those meds worked for dizziness, then...well....I wouldn't be dizzy! I became dizzy while ON them.

[[La...]]

Hi Thomas,

My legs and feet are very much affected, but not my hands. Is it just your hands? Not your legs and feet? Obviously, our legs and feet are very much involved in walking, standing and sitting, so it's almost inevitable that they're affected by balance issues. However, hands aren't usually part of the picture. Having said that, benzos can affect many central nervous system functions, so that might be what's going on for you. Is it something that you've seen a doctor about?

 

 

Thanks about reply Lapis! Yes I have seen my neurologist because of it. He does not know what is causing it. He ordered bulk of blood tests, EMG and did hies own analysis. I will meet him end of next week and we will discuss about altrnatives. Doctors seem not to to be benzo knowledgeable which is not a news. Well, I need probably wait and see if this develops - hopefully it will be better but who knows.

 

Hi Thomas,

I hope things go well for you at your doctor's appointment next week. Please let us know!

 

And yes, I have to agree with you that few doctors seem to be knowledgeable about the effects of benzos. You're in Finland, I'm in Canada, and we've got many Americans and Brits and other countries represented here on BB, but few people mention benzo-knowledgeable doctors in their midst. The lack of  objective tests that reflect what's going on internally creates a major issue, I think. Benzo withdrawal/damage include many possible symptoms -- symptoms which could be part of other syndromes -- so a doctor would have to recognize and distinguish symptoms of one syndrome/disease from another. Very difficult to do, under the circumstances.

[[La...]]

Hello All,

Here's another recent study that may be of interest. It's called "Treatment of Persistent Postural-Perceptual Dizziness (PPPD) and Related Disorders".

 

Abstract

PURPOSE OF REVIEW:  Persistent postural-perceptual dizziness (PPPD) is a newly defined disorder of functional dizziness that in the International Classification of Diseases in its 11th revision (ICD-11) supersedes phobic postural vertigo and chronic subjective dizziness. Despite efforts to unify the diagnosis of functional (somatoform) dizziness, patients will present with a variety of triggers, perpetuating factors, and comorbidities, requiring individualized treatment. This article will review different treatment strategies for this common functional neurological disorder and provide practical recommendations for tailored therapy.

 

 

RECENT FINDINGS:  An emerging understanding of the underlying pathophysiology that considers vestibular, postural, cognitive, and emotional aspects can enable patients to profit from vestibular rehabilitation, as well as cognitive-behavioral therapy (CBT). Crucially, approaches from CBT should inform and augment physiotherapeutic techniques, and, on the other hand, vestibular exercises or relaxation techniques can be integrated into CBT programs. Antidepressant medication might further facilitate rehabilitation, though the mechanisms are yet to be elucidated, and the level of evidence is low. In PPPD and related disorders, vestibular rehabilitation combined with CBT, and possibly supported by medication, can help patients escape a cycle of maladaptive balance control, recalibrate vestibular systems, and regain independence in everyday life.

https://www.ncbi.nlm.nih.gov/pubmed/30315375

 

You'll see a reference to the possible use of antidepressant medication, but then they say "the mechanisms are yet to be elucidated, and the level of evidence is low." Yes. I would hope that medications whose mechanisms of action are not well understood and which include dizziness as a possible side effect are not suggested to people who are dizzy.     

[[La...]]

Hey Dizzy Buddies,

Has anyone had a weird experience at the dentist's office on a dizzy day? I was having a pretty dizzy day yesterday, but I had to do the first of two appointments for a crown, which meant freezing and lots of drilling. Mmmmm, fun times! I actually fainted in the chair. Ick. Not a nice feeling. Fainting dizziness is a completely different beast than my boaty dizziness, and while the former eventually cleared up, the latter didn't. Thankfully, I was able to complete the appointment, and the follow-up appointment should be a breeze in comparison (I hope!).