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

[[cs...]]

 

abcd,do you think it is more than GABA receptors out of whack?That is so interesting!I wonder that too......

 

 

Two word answer to that ... HELL YEAH!!!

 

I always wanted to write my own Gaba-Shmabba-Blabber paper in response to Perserverance's work, lol, it would be quite a riot.  Unfortunately, am way too compromised for what it would entail ... if I could do that, I'd be out in the world and working.  Too bad!   Now remember, I'm kindergarten non-scientific-type layman, but in my early days here, all I kept hearing was this Gaba word of course and I became a bit like a dog with a bone trying to understand it ... so I read every single post in all Perserverance's threads, watched Youtube for dummy videos and other neuro biology/chemisty 101 articles , slogged through a gazillion studies, including searching all the way back to when Gaba was discovered, OMFG what a dork ... but it kept me busy and interested at the time. 

 

And my personal conclusion?  Well, after a while, it just became more and more clear to me how little they actually know.  To this day they're still just working on previous best guesses.  That's what science is, after all, right?  The scientists form the best model they can at any one time but they can rarely know the absolute truth, it's far too complex for that, but based on their various experiments and observations, they form hypotheses, some of which stick and become accepted as "truths".  Then these "truths" are used as a foundation upon which they build and publish more studies ... and so on and so on.  THEN, as time passes, many of these former "truths" are revealed to be FALSE!!! 

 

A publication alone does not validate a hypothesis.  How many of these experiments have even been replicated?  Not to mention publication bias and all that other good stuff.   To me, it's like building a house of cards. 

 

Also, in so many articles I read, they were finding "unexpected" or "surprising" effects related to their experiments messing around with Gaba.  So this now even raises doubt as to the present "truth" about Gaba being the "calming/relaxing" neurotransmitter.  I guess, much like Serotonin was or still is believed by some to be the mood/depression regulator, and yet there are antidepressants on the market in Europe which actually do the opposite, they deplete Serotonin! 

 

One of the most important questions I'd ask is why then is it that not everyone's experience with these meds is the same?  We're not freshly built, just out of the box computers ... and even then, install exactly the same software on each identical computer and some of them will present with different issues.  We all come into this so differently, we all have different chemistry, different meds, different lifestyles, different other ailments, personality differences, other stressors, support systems.  And on and on.  And on.  And on ...

 

Know what I mean?  And I've just seen Lapis' post which seems to support my take on all this.

 

And now I'm already all typed out but I did want to close by saying to dm that I'd have enjoyed discussing this with you, seeing as we're both on completely different sides of the fence.  I did start throwing some studies together all those years ago but it's one disorganized mess, it would take some work to pull them up again.  Also, dm, I did initially try and follow your thread but, seriously, I found it far too hard to read (the lack of formatting and all the quotes) plus it just ain't layman talk, lol!  Seriously, it's far, far, far too technical in its terminology I'm sure for probably 90% of us (not that I want to speak for everyone else).  But, that said, I do understand it would take a huge amount of effort to prepare and post your research in a more simplified or symbolic format.

 

Hoping everyone's having an okayish kinda day.

 

Hi abcd, regarding the laymans thread, I agree.  A much more presentable way to do it would be in edited format in a published book, indexed, etc.  I do think there’s something going on with entrainment of various neural circuits (Neuroplasticity), relative to wd based vestibular issues.

[[La...]]

The big question is, could benzdiazaphine wd and PWS cause similar entrainment??.    Also why do the circuits get stuck in this state?

 

 

We know that Benzodiazaphines do disrupt the phasic firing of neurons in a neural circuit, but I’m not sure if it could entrain networks to fire together, or make it more likely they entrain.    The hippocampus is densely populated with GABAaRs, but not sure about then entorhinal complex (EC).  The hippocampus has something to do with this, but they did not explain it fully.

 

Here are some additional references that I’m reading up on to further understand what exactly is going on.

 

 

Thanks, dm.  Of note, though, is that IrishMonkey has never taken benzos.  One or two others here have also reported that their rocky boat began during their SSRI tapers.  There appears to be more recognition/acceptance in general of this symptom resulting from SSRI w/d.

 

I see.  Yes I ran into the “SSRI wd and vestibular issues” idea in several of the papers I have read.

 

Check out Dr. Joseph Glenmullen's book "The Antidepressant Solution". Dizziness (yup, the floaty boaty kind) is symptom number one for AD withdrawal. One of the doctors I saw years ago thought I had Cymbalta withdrawal syndrome, because another of his patients had complained of similar symptoms when she came off that medication. Apparently, she referred to it as "swimmy head". Again, we're likely back to the effect of various neurotransmitters that are involved in balance.

 

 

[[cs...]]

The big question is, could benzdiazaphine wd and PWS cause similar entrainment??.    Also why do the circuits get stuck in this state?

 

 

We know that Benzodiazaphines do disrupt the phasic firing of neurons in a neural circuit, but I’m not sure if it could entrain networks to fire together, or make it more likely they entrain.    The hippocampus is densely populated with GABAaRs, but not sure about then entorhinal complex (EC).  The hippocampus has something to do with this, but they did not explain it fully.

 

Here are some additional references that I’m reading up on to further understand what exactly is going on.

 

 

Thanks, dm.  Of note, though, is that IrishMonkey has never taken benzos.  One or two others here have also reported that their rocky boat began during their SSRI tapers.  There appears to be more recognition/acceptance in general of this symptom resulting from SSRI w/d.

 

I see.  Yes I ran into the “SSRI wd and vestibular issues” idea in several of the papers I have read.

 

Check out Dr. Joseph Glenmullen's book "The Antidepressant Solution". Dizziness (yup, the floaty boaty kind) is symptom number one for AD withdrawal. One of the doctors I saw years ago thought I had Cymbalta withdrawal syndrome, because another of his patients had complained of similar symptoms when she came off that medication. Apparently, she referred to it as "swimmy head". Again, we're likely back to the effect of various neurotransmitters that are involved in balance.

 

Thanks Lapis.  I will look for it

 

Anything that changes excitatory and inhibitory signaling does have the potiential to alter the shifted sequential firing off of the neurons in a circuit .  When the drug is removed the neurons in the circuit have to adjust to maintain this sequence of firing off.  The various serotonin receptors are both excitatory and inhibitory (depending on which receptor type, ie 5-ht1 vs ht2a, etc.....).  If the neurons in the circuits have difficulty adjusting back to the way they were, the circuits  could inappropriately synch up (entrain)

[[...]]

Hi 4mylife!It is good to hear from you!I wanted to add my thoughts on if we have any good advice on how to over come this dizzy mess,and I have to tell you I am still struggling too,so I know how frustrating this is!I do want to say that dizziness was one of two symptoms that was the worst for me since day one.I remember being so dizzy when I first quit that it actually felt like someone was pushing down on the top of my head.Also,dizziness triggers panic attacks for me,so more fun!

 

 

But,I am so much better than I was even 4 years ago.It's just it has been such a super slow crawl,that if I weren't watching I would have missed it!I still get off balance when moving my head,and walking is a big challenge.The tinnitus and brain fog add to the mix,but they are getting milder.I notice some days are much lighter,and easier then others,and then I get the bad days in there which mean more trouble walking and just doing my daily chores ,etc.You probably read on here where we sometimes rate the dizzy feeling,and I can say I used to be a 10+,where now I am about a 3.Again,it bumps up to a 6 or so on a bad day,but goes back down to a new set point,so I really believe this is going to go away as it will for all of us.For some of us it is just extra slow.Maybe we have more sensitive vestibular systems that take longer to reset,I just don't know.

 

 

What I do,and have done from day one is to just keep trying to do the regular routine you used to do,and challenge yourself to push a bit harder to get there as much as you can.Some days you just can't and I take it a bit easier those days when I can.I sort of have to keep doing a certain amount of things and have since I stopped because some things just have to get done,and I gotta do it.

I think as we putter a long we are healing,and doing our normal stuff will hopefully encourage our vestibular system to get back to homeostasis.I keep thinking about that while I am walking in my yard trying to swing my arms and not look at the ground all the time,while feeling sooo off balance and knowing I must look so goofy walking so wonky,all while trying to act normal!

 

Anyway,sorry I didn't have much to inspire you!Just wanted to tell you,keep going,keep moving,and it is what it is until we heal.

 

Take care! 

 

 

 

 

 

*** TERRIFIC POST, 2200 ***

 

 

[[La...]]

Wow! Cool award, abcd! And congratulations, 2200! 

[[La...]]

Interesting study from PubMed:

 

"Stopping Medications before Vestibular Testing: Evidence-Based or Neuromythology?"

 

https://www.ncbi.nlm.nih.gov/pubmed/29988005 

 

https://sci-hub.tw/10.3766/jaaa.29.7.1

[[La...]]

And another:

 

"The Influence of Caffeine on Rotary Chair and Oculomotor Testing"

 

https://www.ncbi.nlm.nih.gov/pubmed/29988007 

 

 

[Guest [...]]

Lapis,abcd and 4mylife,  Gosh,thank you,how sweet........

 

You all have helped me so much,just trying to give back.........I love you guys!

[[La...]]

Hey 2200,

I think we should have an awards ceremony for you so that we can get all gussied up and clink our glasses of non-alcoholic champagne! 

 

[Guest [...]]

 

abcd,do you think it is more than GABA receptors out of whack?That is so interesting!I wonder that too......

 

 

Two word answer to that ... HELL YEAH!!!

 

I always wanted to write my own Gaba-Shmabba-Blabber paper in response to Perserverance's work, lol, it would be quite a riot.  Unfortunately, am way too compromised for what it would entail ... if I could do that, I'd be out in the world and working.  Too bad!   Now remember, I'm kindergarten non-scientific-type layman, but in my early days here, all I kept hearing was this Gaba word of course and I became a bit like a dog with a bone trying to understand it ... so I read every single post in all Perserverance's threads, watched Youtube for dummy videos and other neuro biology/chemisty 101 articles , slogged through a gazillion studies, including searching all the way back to when Gaba was discovered, OMFG what a dork ... but it kept me busy and interested at the time. 

 

And my personal conclusion?  Well, after a while, it just became more and more clear to me how little they actually know.  To this day they're still just working on previous best guesses.  That's what science is, after all, right?  The scientists form the best model they can at any one time but they can rarely know the absolute truth, it's far too complex for that, but based on their various experiments and observations, they form hypotheses, some of which stick and become accepted as "truths".  Then these "truths" are used as a foundation upon which they build and publish more studies ... and so on and so on.  THEN, as time passes, many of these former "truths" are revealed to be FALSE!!! 

 

A publication alone does not validate a hypothesis.  How many of these experiments have even been replicated?  Not to mention publication bias and all that other good stuff.   To me, it's like building a house of cards. 

 

Also, in so many articles I read, they were finding "unexpected" or "surprising" effects related to their experiments messing around with Gaba.  So this now even raises doubt as to the present "truth" about Gaba being the "calming/relaxing" neurotransmitter.  I guess, much like Serotonin was or still is believed by some to be the mood/depression regulator, and yet there are antidepressants on the market in Europe which actually do the opposite, they deplete Serotonin! 

 

One of the most important questions I'd ask is why then is it that not everyone's experience with these meds is the same?  We're not freshly built, just out of the box computers ... and even then, install exactly the same software on each identical computer and some of them will present with different issues.  We all come into this so differently, we all have different chemistry, different meds, different lifestyles, different other ailments, personality differences, other stressors, support systems.  And on and on.  And on.  And on ...

 

Know what I mean?  And I've just seen Lapis' post which seems to support my take on all this.

 

And now I'm already all typed out but I did want to close by saying to dm that I'd have enjoyed discussing this with you, seeing as we're both on completely different sides of the fence.  I did start throwing some studies together all those years ago but it's one disorganized mess, it would take some work to pull them up again.  Also, dm, I did initially try and follow your thread but, seriously, I found it far too hard to read (the lack of formatting and all the quotes) plus it just ain't layman talk, lol!  Seriously, it's far, far, far too technical in its terminology I'm sure for probably 90% of us (not that I want to speak for everyone else).  But, that said, I do understand it would take a huge amount of effort to prepare and post your research in a more simplified or symbolic format.

 

Hoping everyone's having an okayish kinda day.

 

 

 

 

 

ok abcd,Gaba-Shabba-Blabber is hilarious!I read awhile back in an older post where you said that,and laughed my head off!Something about" Oh yay,it's gaba schmabba blabber time again"......

 

Made me think about it back then too,if this is really just mostly about gaba.Most days it feels like my entire brain chemistry has a horse in this race!But I hate to admit,I can't understand the technical terms on the studies that sometimes get posted,and after reading part of the way through,I give up and skip it.Has to be easy peasy for me to get my mind wrapped around it!I am also a say it in layman's term kind of person.

 

I hope you can write that paper someday on gaba-shabba-blabber.I would love to read that!I have a feeling I would not only be learning a lot but laughing my head off!! 

[Guest [...]]

Hey 2200,

I think we should have an awards ceremony for you so that we can get all gussied up and clink our glasses of non-alcoholic champagne! 

 

 

 

Sounds fun Lapis!And we can always dig those Dorothy red shoes out of the closet,get all gussied up and head to Oz for that spectacular faux champagne party!I'm feeling just loopy enough to dance with a bunch of flying monkeys!

 

 

[[La...]]

Hey 2200,

I think we should have an awards ceremony for you so that we can get all gussied up and clink our glasses of non-alcoholic champagne! 

 

 

 

Sounds fun Lapis!And we can always dig those Dorothy red shoes out of the closet,get all gussied up and head to Oz for that spectacular faux champagne party!I'm feeling just loopy enough to dance with a bunch of flying monkeys!

 

Ooh, yes please! I think about heading to Oz all the time. I'm still scared of the flying monkeys, but I'd love to chat with pretty much everyone else -- especially Toto! His English skills might be limited, though. Ah well, it's Oz, so everything is possible, right?!

[[4m...]]

Thank you for your response.  I will admit at one time I was drinking on a daily basis.  I have not done that in quite some time.  Now I limit it to having a few (if any) only on the weekend.  I am fully aware of the affect it has on balance, especially if I overindulge. 

I recently bought a Tia Chi video and thought I would give that a shot to see if it would help strengthen my ability to feel balanced.  I, like so many others, was sure this boaty feeling would have passed by now.  I went to a chiropractor to see if that avenue would help - oh MAN it sure didn't!!!  It got so much worse, which is what convinced me there MUST be something else seriously wrong.  Now that I know that isn't the case it has helped relieve my anxiety and overthinking the whole issue and now I have recommitted to getting myself healthy and strong to the best of my ability.

Thanks again for your input.  I have appreciated this site so much - somehow knowing I'm not alone in this is helpful.

 

T'ai Chi is a great idea, 4mylife! It hits all the right notes in terms of being gentle, helping with balance, coordination, strength, concentration, etc. I used to do it years ago and I loved it so much. I've got some serious foot issues right now, so I'm limited to using a walker for walking and doing a series of exercises for specific muscle groups, but any all-over exercise -- especially something in standing -- is a good thing with regards to neuroplasticity in the brain. Keep it up!

 

I'm sorry to hear about that bad experience with a chiropractor. I admit that I'm not a big fan of that type of therapy. I would always choose physiotherapy for a soft-tissue issue, because in my opinion, it just makes sense. Some have specific training in vestibular rehabilitation, which is a field that's growing. I keep checking PubMed to see if I see any developments that might pertain to us.

 

Thanks for the clarification regarding alcohol. When you were mentioning your experience with the testing, I wasn't quite sure, and I didn't want to misconstrue anything.

 

I haven't started using Tia Chi yet - I've had the video longer than I care to admit, but I do plan on giving it a try.  I struggle to accomplish anything after work, just staying upright and on task all day is exhausting.  I know I need to do something to be more active though, because sitting at a desk all day is doing nothing to retrain my brain! 

 

I need to start eating better as well, I've put on quite a few pounds since this all began and that certainly isn't doing me any favors either!

 

Thanks so much for welcoming me back to share our journey.

 

Edit: Fixed quote box

[[La...]]

Hi 4mylife,

It was a bit hard to read your last note because I think you put it in between the quoted text. I just wanted to say that it's a huge accomplishment to be working if you're dealing with disequilibrium, so you should feel quite proud of yourself for doing so. I'm extremely debilitated by my situation, so just getting around my apartment here is a big deal for me. Kudos to you for doing as much as you do!

 

As far as eating better goes, all I can say is "Yes, do it!" For me, that's always been an important thing. I just have to. Even if you take small steps, I'm sure you'll feel better.

 

[[4m...]]

Hi 4mylife,

It was a bit hard to read your last note because I think you put it in between the quoted text. I just wanted to say that it's a huge accomplishment to be working if you're dealing with disequilibrium, so you should feel quite proud of yourself for doing so. I'm extremely debilitated by my situation, so just getting around my apartment here is a big deal for me. Kudos to you for doing as much as you do!

 

As far as eating better goes, all I can say is "Yes, do it!" For me, that's always been an important thing. I just have to. Even if you take small steps, I'm sure you'll feel better.

 

 

Sorry my post was hard to read - not sure what I did!  lol

 

I do work, full time +.... my job can be extremely stressful but it gets me out of the house and gives me the opportunity to focus on something besides "how I feel" which I am very grateful for.  If I didn't work I would very quickly become a shut-in I believe.  I started this job after just a few days of taking my last dose of Klonipin.  My boss has been very understanding and supportive throughout the process, even on the days I just couldn't force myself to come in.  For me on the days that the boatiness is at it's worse, so is my anxiety.  It's like a vicious circle, the more anxious I am the more unsteady I am which makes me more anxious which makes me more unsteady.  Maybe it's the same for everyone.  But working full time does take a toll on my energy.  It is hard for me to force myself to be active in the evening and on the weekends.... but I also know in order to retrain my brain I have to become more active.

 

Although my B1 level came back slightly elevated in my lab work I take a supplement tablet of B1 every day.  It has benefits of reducing stress and anxiety and helping to increase energy.  Since it is water soluble your body gets rid of the excess that your body doesn't use.  I have found nothing to indicate there is a danger for your B1 to be a little high, unlike the deficit of B1.  At any rate, it seems to work for me, along with the other supplements I take.

 

Hope your having a great day!

[[La...]]

Hi 4mylife,

Well, I think we can all relate to the feeling of anxiety with the boatiness. It's almost inevitable. The body needs stability, and feeling unstable makes people anxious. I'm so glad to hear that your boss is supportive and understanding. That's phenomenal!

 

How do they test for B1? I've never heard of testing for a water-soluble vitamin. It likely changes rapidly, doesn't it? Wouldn't it be better to leave out the supplement if you're already high in that?

[[4m...]]

Hi 4mylife,

Well, I think we can all relate to the feeling of anxiety with the boatiness. It's almost inevitable. The body needs stability, and feeling unstable makes people anxious. I'm so glad to hear that your boss is supportive and understanding. That's phenomenal!

 

How do they test for B1? I've never heard of testing for a water-soluble vitamin. It likely changes rapidly, doesn't it? Wouldn't it be better to leave out the supplement if you're already high in that?

 

B1 is tested through blood work.  It was tested because the dr expected me to be severely deficient (which would have supported his assumption that I was an alcoholic).  There is no danger in taking B1, as mine came back only slightly high and my body will get rid of any excess I don't need.  I continue to take it because it does help with the stress and anxiety.  The way I look at it is that it is much better for me to take a natural supplement for it than the chemicals a dr would push on me, that always proves to be counter-productive.  I called my family dr after the blood work came back showing the elevation and they are not at all concerned about it.  I tend to self diagnose (thank you Dr Google) and everything I read says a slightly elevated B1 level is nothing to be concerned over and that you pee out anything unused.  I do appreciate your question though.  It is a supplement I recommend - it has done me a lot of good in the couple of weeks since I started taking it.

[[La...]]

Ah, interesting! I'm glad it's helping you. I've just never heard of a B1 test. But yes, you're right, the water-soluble vitamins are probably relatively safe to take. It just might make for slightly more expensive pee! I used to take the B vitamins as a supplement, and my pee was bright yellow from it! I decided to just stick with food for those things. I, do, however, take a few things, based on what's going on with me The cost adds up, but I need the extra help right now.

[[La...]]

Hey Dizzy Buds,

Here's a recent study on vestibular rehabilitation:

 

"Vestibular rehabilitation in elderly patients with postural instability: reducing the number of falls-a randomized clinical trial"

 

https://www.ncbi.nlm.nih.gov/pubmed/30008159

 

 

[[Th...]]

Hey Dizzy Buds,

Here's a recent study on vestibular rehabilitation:

 

"Vestibular rehabilitation in elderly patients with postural instability: reducing the number of falls-a randomized clinical trial"

 

https://www.ncbi.nlm.nih.gov/pubmed/30008159

 

Hi Lapis2, interesting study!  Do you know what vestibular rehabilitation is and what are the most effective exercises to improve stability?  Kind regrads, T.

[[La...]]

Hi Thomas,

There are different exercises based on a particular person's need or deficit. I'm not sure which specific exercises were used in this study population, but I was able to access the full study and will have a look at it later on. If I can find a decent description of the exercises used, I will certainly share it here. Other than that, I think you might be able to Google it and find some exercises.

 

I did it a number of years ago, and the exercises were based on my specific test results at that time, so I wouldn't suggest them for everyone. In the end, they didn't help my dizziness, but I don't think they're dangerous in any way.

 

Basic balance exercises are always a good thing, though, e.g. standing on one leg with eyes open, then eventually with eyes closed, standing in a tandem stance (one foot right in front of the other), etc.

[[La...]]

Here's the full study for the abstract on vestibular rehabiliation which I shared above, if anyone would like to have a look:

 

https://sci-hub.tw/10.1007/s40520-018-1003-0

 

[[Th...]]

Thanks Lapis2, I definetly read it!  😊😊😊

[[La...]]

Hey Dizzy Buds,

How is everyone doing? The topic of dizziness and hormones has come up around here before -- especially with regards to the studies on Mal de Debarquement Syndrome that abcd recently shared with us. Well, here's another study that connects those two dots as well:

 

"Correlation between auditory-vestibular functions and estrogen levels in postmenopausal patients with Meniere's disease"

 

https://www.ncbi.nlm.nih.gov/pubmed/30030864 

[[La...]]

And here's another one on a topic we've touched on but not necessarily named: "cybersickness". From what I can glean, it's the motion sickness that people feel from the use of a computer, cell phone (e.g. scrolling on it) or virtual reality glasses. I've got both a study and a Telegraph article to share on this subject. I've often wondered how anyone can do those computer games and not feel dizzy. Well, I guess I have my answer! Many of them DO feel dizzy.

 

"Estimating the sensorimotor components of cybersickness"

 

https://www.ncbi.nlm.nih.gov/pubmed/30044672 

 

 

"Cybersickness: The new 'illness' sweeping the nation"

 

"It’s a natural response to an unnatural environment."

 

With motion sickness you feel ill because you feel movement in your muscles and your inner ear but do not see it.

 

The mismatch in digital sickness is the opposite; you see movement on the screen but you don’t feel it.

 

https://www.telegraph.co.uk/news/health/news/12001743/Cybersickness-The-new-illness-sweeping-the-nation.html