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

[[La...]]

Helen this is good that yours come and go. One day it will be gone for good. That trip from NYC must have been terrifying for you. I’m sure you were very upset and scared it was permanent. I know I sure was when it hit me. To this day I’m not sure if it was all the reductions caught up to me or the beginning of acute or a combination. Mine started toward the end of my taper around the 4mg mark. I had just reduced 3 days before it hit me. I woke up that morning feeling weird head symptoms like something was very wrong. Like something was about to happen and I knew it wasn’t good. And rightly so! When I stood up to go to the bathroom I knew immediately I was not like the day before. So I figured I’d hurry to the bathroom and just lay back down. I finished pottying and was about to get up off the toilet. As I was talking to my spouse I realized I felt intensely weirder! Before I could get up I heard a POP inside my head. Immediately I lost my balance and control of my body as inside of my head suddenly spun out of control very intensely. I fell off the toilet onto the floor. The severe vertigo seizure like episode lasts a few seconds. When it stopped…I was left with severe boatiness, magnet pulling me down sensation, diarrhea, balance ( ataxia), very loud ear ringing, nausea ( never vomiting) and other symptoms showed up in the weeks following. It rendered me completely bedridden! Couldn’t tolerate being upright to walk, sit up to eat, etc. I have been boaty/ dizzy, unbalanced, pulling sensation every since. So if you add up the rest of my taper time and up to now, it’s been somewhere between 28-30 months. For a very long time, it didn’t budge. I’d say at the 10 month mark I went into a window for about 2 months. During this timeframe my boatiness, ataxia and pulling were mild and popped in or out only at certain times…like my bedtime or mornings. It’s still like that as far as when it’s at its worse. I got slammed at my 1 year mark….all of those increased in intensity for a few months then started gradually slowly improving. I got slammed again last week but this time it wasn’t as intense as the last time. Which is where I am now waiting to return to my baseline. It is very scary to be walking around very well then out of the blue spin out of control falling over because you can’t control your muscles. Putting an end to your progress. It also makes you feel like it’s permanent that you’ll be doing this for the rest of your life. But common sense says if it was permanent then you wouldn’t have windows of it disappearing. 

Hope yours doesn’t come back. And I hope mine leaves for good too.

[[He...]]

LD,

 

Thank you for sharing that. You must have been so freaked out! The onset of yours was different than mine but I suspect the sensation are similar now.  That popping noise must have been a real eye opener!  Gosh, I'm so sorry.  Our brains are very interesting mechanisms. Why some people do not have these problems and others have them severely baffles me. For instance, I have a friend here in town who took Ambien 10 mg every single night for about 16 or 17 years.  She also occasionally drank wine in the evening but not a lot. I helped her figure out a very, very slow taper.  Besides some insomnia she has had no trouble. She's been off a couple of months now and still struggles with sleep but is FINE.  Completely fine. No gut issues, no balance problems no tingling or burning. Fine.  Blows me away. I'm very happy for her as she is a kind and wonderful person. Apparently her brain was not one that was going to have long term effects.  She wanted to stop because her memory wasn't functioning well and she was finding she startled to easily. Those were pretty much her only symptoms and now they've improved. 

 

Lady Den, you're going to get better. You've shown great progress and you are in a wave right now. The good stuff is going to come back.  Wrists locked!

 

[[La...]]

Helen I’m floored at your post! Wow that lady is damn lucky! A little insomnia is all??? Wow! Yes I’m baffled as well why some have severe consequences on ambien and some don’t. It must be something genetic or a part of the brain’s anatomy differences in certain people. For example if this lobe or that lobe was smaller or larger then those people would suffer. I don’t know but it sure is a huge mystery. When I’m well enough I’d like to get one of those tests that tell you which medication or foods are not good for me. I don’t recall the name of the test. Have you heard of those? I bet money that Ambience will be on that list on mine! But too late I already found out the hard way.

🤝❤️ Wrists locked!

[[La...]]

Soooooo, I must ask you both....What does "wrists locked" mean?! I've never heard of it. Do you know its origin?

 

Anyway, that's just an aside. Regarding the question of why some people do okay when coming off benzos and Z-drugs, I'm sure it's a combination of factors, but it's probably mostly genetic. Our genetics determine how we metabolize substances like medications and alcohol. Age and overall health can factor in too, plus how long we took our medications, which ones and any concurrent medications we took, since there can be interactions.

 

 

[[La...]]

Lapis thank you for that insight. I agree that it must be genetics. That’s why I’d like to get that test I was referring to. So I’d know what I don’t metabolize well or would probably have a reaction to. Have you had one of those tests?

 

Wrists locked is a saying that I came up with. It means our wrists are locked to hold each other up especially if we are getting slammed down by our symptoms. In the spiritual world when someone is going through something and need prayer, they say to lock wrists as in joining hands. It’s a catchy way of saying “I got you!”

So Lapis wrists locked to you 🤝 anytime you need a friend.

[[La...]]

Lapis thank you for that insight. I agree that it must be genetics. That’s why I’d like to get that test I was referring to. So I’d know what I don’t metabolize well or would probably have a reaction to. Have you had one of those tests?

 

Wrists locked is a saying that I came up with. It means our wrists are locked to hold each other up especially if we are getting slammed down by our symptoms. In the spiritual world when someone is going through something and need prayer, they say to lock wrists as in joining hands. It’s a catchy way of saying “I got you!”

So Lapis wrists locked to you 🤝 anytime you need a friend.

 

Hi LadyDen,

Thanks for clearing that up! I was looking online for that saying and I came across a mish-mash of things. Now I know! And thank you for extending that support. Very kind of you.

 

I haven't had any genetic testing, but I know there was a trial going on at a mental health facility here in my city. It was a study about pharmacogenetic testing, and they were doing DNA testing (swabs of the mouth) to test for antidepressant and antipsychotic medication reactions so that they could reduce bad reactions and hopefully prescribe a more appropriate medication for someone. I don't know what the outcome was, but I've certainly come across the term "pharmacogenetics" in my online research. It makes sense, and I hope it becomes more available to people.

[[La...]]

Lapis that is awesome for them to do a study like that. I think that should be a test they do with everyone to avoid irreversible disasters to human lives. All of this technology and advancements in science or medicine and these disasters are still happening. I think it’s so ridiculous and heartbreaking! IMO I think it’s absurd to spend billions of dollars on going to take a look into the universe while people here on Earth need that money in the medical fields to prevent medical mishaps or save lives. I often think about this….

Ok so you spend all that money and discover a new galaxy way out there. And? The universe is full of those! Some they’ll never know about. You saw it, now what? What’s the benefit? Nobody can go live there anyway. Such a waste! But you have right here on the streets homeless families with children! Old people without medical care! Disabled veterans who fought for our country barely making it! Our rivers, oceans and waterways polluted! Farmers struggling! People can’t afford their bills and one paycheck from joining the homeless! And so much more. And throw on top of that a world pandemic which made those situations worse. Some people became homeless because of the pandemic, lost their businesses and major bread winners in their families. And you want to go find a new galaxy just to say it’s out there? Makes no sense to me! What about us in benzo hell…we could use some long awaited research or discovery of something that could help. Look how old Dr Ashton’s research is. Although we still appreciate as well as benefit from it to this day, it needs someone to pick up where she left off. Desperately so. Am I right?

It angers me to the core that looking at how long she made this awareness in the medical field, people are still having their lives ruined. So I’m not buying that they didn’t know. Personally I caught my doctor in that very lie! She knew. But I have to make peace with it. It is done so now all I can do is pick up the pieces as my brain will allow. As it slowly heals the great damage from years of use. I go to bed every night with a prayer in my heart that tomorrow will be my day I wake up healed from this nightmare. So far every morning I’m not so I do what I can when I can and go to bed with that same prayer. I know one of these mornings that prayer will be answered.

[[li...]]

Hello everyone, I believe I posted on this post years back…

Now almost 10 years off Xanax….I still have the pushing shoving wobbly boaty feeling …and the ear ringing …

 

I went for long periods of time without the boaty feeling …then one day it comes back and lasts for weeks…

Then goes ….then it’s there again …believe me I’m happy for the time it “ disappeared “

 

The ringing has not gone away ever ….

 

So I understand this long term symptom very well, and I sympathize with anyone who has this issue ..

I’m beginning to think though , that I may not heal from this horrible leftover symptom. I can deal with the ears ringing…I’ve gotten used to that …but this balance business….by far the worst ..

 

I haven’t given up , I’ve just resigned myself to the fact I’ll probably be playing peakaboo with this for the rest of my life ….

I wish whoever is going through this …healing and health …prayers do get answered …

 

Right now I’m in a wave of dizzy boat head ….waiting for the window to open again..

I do consider myself quite fortunate to have had many windows through the years ..

 

Wishing you all well..

Much love,

little ❤️

[[Mo...]]

Lady Den.  Saw you description of the day your boaty dizziness started.  Mine started in a similair way 4 years ago.  I was in a yoga class doing relaxation and suddenly there was a pop in my neck and the horrible room spinning, nausea ect.  When that cleared the boaty dizziness remained and is still here.  I did not realize it could be the benzo for 14 months and then began a slow taper.  Off almost two years and no change in the dizziness. 

[[La...]]

Hi LadyDen,

 

I just found a media release on that study I mentioned, and it seems the focus was just on anti-depressants. Here it is:

 

https://www.camh.ca/en/camh-news-and-stories/pharmacogenetic-testing-shows-promise-improving-symptoms

 

Here's a key excerpt:

 

Pharmacogenetics is based on the premise that each person may metabolize or respond to medications in different ways based on their own individual genetic profile. That can mean that patients given the same dosage of an anti-depressant medication may have very different levels of it in their bodies, or that some patients may be able to tolerate higher doses of a drug without debilitating side effects based on their genetics. Through customized genetic testing via a cheek swab, pharmacogenetics can help select appropriate drugs and dosages for each patient with the fewest side effects in the shortest period of time.

 

In the release, they do mention the issue of cost, which is probably why it's not widely used at this point.

 

[[La...]]

Hello everyone, I believe I posted on this post years back…

Now almost 10 years off Xanax….I still have the pushing shoving wobbly boaty feeling …and the ear ringing …

 

I went for long periods of time without the boaty feeling …then one day it comes back and lasts for weeks…

Then goes ….then it’s there again …believe me I’m happy for the time it “ disappeared “

 

The ringing has not gone away ever ….

 

So I understand this long term symptom very well, and I sympathize with anyone who has this issue ..

I’m beginning to think though , that I may not heal from this horrible leftover symptom. I can deal with the ears ringing…I’ve gotten used to that …but this balance business….by far the worst ..

 

I haven’t given up , I’ve just resigned myself to the fact I’ll probably be playing peakaboo with this for the rest of my life ….

I wish whoever is going through this …healing and health …prayers do get answered …

 

Right now I’m in a wave of dizzy boat head ….waiting for the window to open again..

I do consider myself quite fortunate to have had many windows through the years ..

 

Wishing you all well..

Much love,

little ❤️

 

Hi little m,

Thank you for sharing your story and for the kind wishes to everyone.

 

I'm just curious to know if you've had testing or sought any kind of help, and if so, what experiences you had. We all seem to have different experiences with that, and I would be interested to hear yours. It's great that you've had long stretches without the dizziness. It really does say that your brain is capable of that. Maybe it's on the way out......

[[Mo...]]

I am not sue how to write a reply but am trying

Hello Stardust 62

Quote 

Hello fellow Dizzy folks. I have been reading this thread a lot and I am not sure if I have chimed in. Yesterday was my 18 month sobriety date from alcohol. I think it has been about 17 months since I took any benzos. I feel so much better than I did a year ago or even 6 months ago. But the boaty floaty feeling is still with me 24/7. I had some small windows here and there but I had setbacks by I believe two dental surgeries, when I took sedation drugs. Anyway, about the only time I don't feel the sensation is when I am driving or riding in a car or riding a bike. It seems to get more intense once I get out of the car or off the bike. Also, it is worse at night. The few days that I have been rock free I wake in the morning that way and I feel great all day. But it usually comes back that evening or the next day. It has been a good month or six weeks since I have had that pleasure of not rocking.

 

I have occasional insomnia and take trazodone for it sometimes. Does anyone know if that could hurt my healing? I long for the day that I am not rocking. My husband says I should just accept that I may always have it and be grateful that I can function pretty well with it. I do play tennis, walk, ride my bike and don't appear to be rocking to those that observe me. But I occasionally lose my balance and bump into things. Fortunately, I have not had any falls and I am pretty coordinated. I know I have got it better than a lot of people on here.

 

I am so grateful to have learned about this thread from the Benzo Buddies community. It is so nice to know there are others that experience this. Sometimes I feel like I am in an episode of The Twilight Zone.

 

My answer:

My dizziness also goes away when I am in a moving car and then comes back with a vengeance when I get out.  It is very similar to Mal de Debarquement Syndrome (MdDS0

[[La...]]

Hello everyone, I believe I posted on this post years back…

Now almost 10 years off Xanax….I still have the pushing shoving wobbly boaty feeling …and the ear ringing …

 

I went for long periods of time without the boaty feeling …then one day it comes back and lasts for weeks…

Then goes ….then it’s there again …believe me I’m happy for the time it “ disappeared “

 

The ringing has not gone away ever ….

 

So I understand this long term symptom very well, and I sympathize with anyone who has this issue ..

I’m beginning to think though , that I may not heal from this horrible leftover symptom. I can deal with the ears ringing…I’ve gotten used to that …but this balance business….by far the worst ..

 

I haven’t given up , I’ve just resigned myself to the fact I’ll probably be playing peakaboo with this for the rest of my life ….

I wish whoever is going through this …healing and health …prayers do get answered …

 

Right now I’m in a wave of dizzy boat head ….waiting for the window to open again..

I do consider myself quite fortunate to have had many windows through the years ..

 

Wishing you all well..

Much love,

little ❤️

Hello Little M. Very nice to meet you! I remember seeing your profile when I’ve read through this thread a few times. I’m very sorry to hear that you’re still dealing with this vestibular crap this far out. But it is reassuring that it goes completely way for awhile. At this point I’ll take that! This has me housebound for going on 3 years now. Although I’m 2 days from being 25 months off, this started toward the end of my taper when I got down to 4 mg. I woke up one morning and was hit with a sudden severe episode of vertigo and my brain shutting off. I lost all muscle control when it happened for a few seconds and it’s been with me every since. I have had windows recently ( within the past 2-3 months) where it disappears or nearly does for hours at a time several times a day. I’m taking that as my brain trying really hard to get it right. This has caused me not to be able to ride in a car or sit up for very long. The sitting up has gotten better within the past 2-3 months as well. I can sit up now to watch a movie with my family and that’s it. Back to lay down I go. Did you have trouble riding in the car? How did you manage it? Did you do it anyway? When you did, what was the consequences afterwards…make you worse? Fainted? Setback, etc? My family and friends think it’s mind over matter. I wish it was! They think I can just make up my mind and go anywhere. I tell them well first I have to be able to walk to the car! What are you going to do, carry me around everywhere? As soon as the car starts moving, My symptoms immediately kick into high gear. It’s so upsetting!

Thank you for coming back to let us know how your doing. I pray that it finally goes away for you! Sending you big hugs.

[[La...]]

Lady Den.  Saw you description of the day your boaty dizziness started.  Mine started in a similair way 4 years ago.  I was in a yoga class doing relaxation and suddenly there was a pop in my neck and the horrible room spinning, nausea ect.  When that cleared the boaty dizziness remained and is still here.  I did not realize it could be the benzo for 14 months and then began a slow taper.  Off almost two years and no change in the dizziness.

Woah! Movingon that is crazy! Unlike you I knew mine was benzo ( Ambien) WD. I think my reductions caught up with me. I’m floored that I’m not the only one who had this sudden POP then it started. And the same as you, mine still remains. It is improved. It had me COMPLETELY bedridden. Now I’m able to care for myself, take a couple of short walks ( about 10-15 minutes at a time) but I pay for it! My symptoms immediately intensify. But now once I lay down for about 30-45 minutes it goes back to baseline. Does yours have varying degrees? Does it go away or nearly does ( in a window), can you ride in a car? Etc?

I really pray to God that this goes completely away soon. Enough already, right? Congrats on you being off almost 2 years. May the boaty fairy sprinkle her magic on us ridding us of this prison! Big hugs 🤗

[[La...]]

Hi LadyDen,

 

I just found a media release on that study I mentioned, and it seems the focus was just on anti-depressants. Here it is:

 

https://www.camh.ca/en/camh-news-and-stories/pharmacogenetic-testing-shows-promise-improving-symptoms

 

Here's a key excerpt:

 

Pharmacogenetics is based on the premise that each person may metabolize or respond to medications in different ways based on their own individual genetic profile. That can mean that patients given the same dosage of an anti-depressant medication may have very different levels of it in their bodies, or that some patients may be able to tolerate higher doses of a drug without debilitating side effects based on their genetics. Through customized genetic testing via a cheek swab, pharmacogenetics can help select appropriate drugs and dosages for each patient with the fewest side effects in the shortest period of time.

 

In the release, they do mention the issue of cost, which is probably why it's not widely used at this point.

Thanks Lapis. Yes I knew they had those test that could tell you which medications would best suit your body genetically. As soon as I’m wel enough. I want one. I wonder if I can get it online and send it in?

Hope your day is a good one. Thanks for all you do for us on this thread. You’re truly a jewel 💎

[[li...]]

Hello everyone who replied back to me , I’ll do my best to answer what you have asked.

 

I did go for all kinds vestibular testing years back , everything was kinda normal from what I remember.

I do have BPPV in my left ear and had treatment for it but it’s been about 5 years now ..so that could cause some of my weird sensations . It’s funny cause it never showed up in my earlier testing .

 

As far as going in the car …I take a natural motion sicken pill…so I’m ok with that . I do get panic attacks occasionally ..and then I will get the falling down feeling …you know the feeling when you go up and then down in the elevator when it stops? Well, that’s what I get now and then …and I feel like I can’t move my legs ..it’s hard to put one foot in front of the other ….little dumb things happen to me …no rhyme or reason ..

 

I had to give up driving  when this all happened to me …so now it’s been 10 years  no driving…I just get panicked when I’m in the car…so I avoid too much been driven around . I’m fortunate my husband does the shopping ..I also have a bus service for doctor appointments in my town , which I use a few times a year .

 

I’m sure I probably have some underlying condition they can’t find….but I’m sick of doctors…so I’ll just stay as I am .

 

I hope all of us dizzy boaters feel better soon…cause this is a miserable condition.

Stay well everyone.

Much love ❤️ to all

little

[[La...]]

Hi Dizzy Buddies,

I want to share a couple of articles that I've shared here before, but with so many new dizzy pals on the thread, I think it might be helpful to share them again. The first one is an indepth scholarly article on the difference between the two main types of dizziness, ie. canal vs. otolith dysfunction. These are two parts of the inner ear that may be affected when one feels dizzy, but they manifest in different sensations of dizziness. While the canal type of dizziness has been studied a lot and can be diagnosed fairly easily with a number of vestibular tests, otolith dysfunction has been studied less and it's more difficult to test. Canal dizziness is usually of the rotary/vertigo type, while otolith dizziness involves "linear symptoms", according to the article.

 

Guess which kind we have?!

 

Yes. We ALL seem to be describing otolith dysfunction. I'll pull out a few key quotes from the beginning of the article in order to illustrate my point:

 

"Tomanovic and Bergenius [3], who studied the prevalence of different types of dizziness symptoms in subjects with P-VeD, expanded the understanding of subjective descriptors by concluding that in addition to the classic symptoms of vertigo, the presence of “nonclassical” symptoms, such as drop attacks, unsteadiness like walking on a boat, walking on pillows, stepping into a hole, and feeling like being pulled to one side, occur in these individuals. In Tomanovic’s study, only tests of canal function, and not otolith function, determined the diagnosis of P-VeD. It is not known whether the otolith organs (e.g., utricle and saccule) were also damaged and may have contributed to the subjects’ symptoms, especially the “nonclassical” symptoms."

 

"Advances in vestibular function testing procedures has identified otolith dysfunction [6, 9–11] and several investigations have reported that subjects with otolith dysfunction described their symptoms as feeling like sensations of rocking, tilting, walking on pillows, being pushed or pulled, feeling drunk, and falling [7, 12]. Even though these descriptions were only anecdotally associated with P-VeD, it questions whether the limited focus on symptoms of rotary vertigo impedes the diagnostic process....."

 

And a bit further down, it states:

 

"The neurophysiology of the canals and otolith organs is distinct with unique contributions of each to perceived head position and balance abilities. Therefore, adults with dizziness and imbalance due to otolith organ involvement may present with different symptoms as compared to those with canal dysfunction. Both canals and otolith organs contribute to the perception of head orientation, but each responds to unique stimuli [23–25]. The canals are optimally sensitive to angular acceleration, which explains why patients with pathology affecting the canals report symptoms of spinning (rotary vertigo) [7]. The otolith organs, although less thoroughly studied and understood [8, 12], optimally respond to linear and gravitational acceleration due to translational head movements and head tilts [2, 24]. This could explain why anecdotal reports of feeling like rocking, tilting, walking on pillows, being pushed, feeling drunk, and falling have been used by patients with otolith dysfunction [7, 12]. In addition to perceived orientation, canals and otolith organs both contribute to postural control via vestibulospinal pathways. However, it is thought that the contribution of the otoliths is the main vestibular source for postural control [23, 25]. The vestibulospinal pathways that receive canal input terminate on motor neurons of the cervical cord, whereas those of the otolith organs innervate motor neurons from the cervical through the sacral cord [26]...."

 

It goes on, of course. I'll post the link for all to read. If you're not up to it, don't worry. It's there, if you're interested.

 

http://www.hindawi.com/journals/isrn/2014/629049/

 

The other article I want to share ties into the first one, in that it looks at "vestibular suppressants", of which the benzodiazepines are one type. According to this second article, lorazepam, the benzo used in this example, "selectively suppressed" a specific part of the vestibular system. Which part? The "utriculi". Referring back to the last article, the utricle is one of the otolith organs (saccule and utricle). So, if the benzodiazepines "selectively suppress" the utricle, and that results in the symptoms noted above, such as "tilting, rocking, and being pushed", then I think there's very little mystery as to why we're all feeling the way we are. Having read these articles, I don't question it at all.

 

Here's the second article (Note: It's just an abstract, not the full study.):

 

http://www.ncbi.nlm.nih.gov/pubmed/22517315

 

 

I hope you're all hanging in there as you rock and roll and tilt and walk on pillows and feel like you're falling into holes. Take good care, Everyone!

Lapis I was looking back into the older posts on this thread and couldn’t help but bump this. It just makes so much sense! I thought it would be a benefit to others who are floaty boaty dizzy unbalanced to read this very informative information. It gave me some “idea” of why I’m so boaty/ unbalanced for so long. I’m sure I’m not the only one that has searched and researched for any explanation or something that would help. I’m aware that there’s nothing or not very much that we can do except wait this out. Being at its mercy is so exhaustingly frustrating especially when enduring the nonlinear nature of this. I’m 25 months off. This has been my worst and longest lasting symptoms the ENTIRE time starting at the end of my taper. But, I will say that it has waxed and waned. Some days it’s worse than others. I have even recently at 22-23 months had days when it disappeared completely for hours during the day. Even on those days, at bedtime like clockwork , it reappears. Bedtime is when mine has been it’s worse….strangely that’s the time I used to take my Ambien ( zolpidem). Since my 2 year milestone I’ve been hit with uptick in waves and these symptoms have increased in intensity. I’m not sure if I’m rapid cycling or what? Or if my brain has simply gotten to a more extensive repair phase. I did read other posts that this occurred with them at my same timeframe. Aka, milestone waves. The good news is most of them healed afterwards and the ones who didn’t heal was much better ( nearly healed). I’m praying that this is what’s happening to me. I’m disappointed that I had made such progress before my 24 months- walking more ( especially outside), sitting up more, doing chores, regained the ability to do things I haven’t been able to do in years, began riding in a car again, etc. Now….. I’m back to being in bed most of the day because my vestibular symptoms won’t let me do much. So, just like before, I’ll just have to wait it out again and see if my baseline is improved or I healed….finally! I will add that this is the first time that I’ve gotten slammed and wasn’t completely bedridden again. I still can walk without my walker and take care of myself. So that is definitely an improvement.

I hope you’re having a beautiful better less dizzy day. Big hugs 🤗

Hugs to all the buddies who are dealing with this. 🤗

[[He...]]

LD,

 

I'm so sorry you are back in bed. So very sorry.  My goodness, you have paid all your dues to the dizziness, boatiness club!  I'm sending you the biggest hug ever.  This is going to pass. You've had some emotional challenges lately and that's bound to be affecting your progress. But you will come back.  We need you!! I find that when I'm anxious my balance goes almost completely out.  Just to make it to a friend's for dinner last night, my entire body betrayed me. My typically low BP spiked up a bit, I felt like couldn't breath for hours, burning and tingling were going bezerk and I couldn't stand more than about a minute at a time. I had to sit on the friends' couch before dinner the entire time.  This happens to me almost every single time I try to go somewhere which leads me to believe that even if I don't THINK I'm anxious, my body thinks I am. It just hasn't figured out how to chill the hell out on its own.  Sooo, all this to say, maybe your current wave and regression is at least partly coming from a place of deep emotions (Zman, etc). 

 

LOVE and prayers to you,

Helen

[[La...]]

Hello everyone who replied back to me , I’ll do my best to answer what you have asked.

 

I did go for all kinds vestibular testing years back , everything was kinda normal from what I remember.

I do have BPPV in my left ear and had treatment for it but it’s been about 5 years now ..so that could cause some of my weird sensations . It’s funny cause it never showed up in my earlier testing .

 

As far as going in the car …I take a natural motion sicken pill…so I’m ok with that . I do get panic attacks occasionally ..and then I will get the falling down feeling …you know the feeling when you go up and then down in the elevator when it stops? Well, that’s what I get now and then …and I feel like I can’t move my legs ..it’s hard to put one foot in front of the other ….little dumb things happen to me …no rhyme or reason ..

 

I had to give up driving  when this all happened to me …so now it’s been 10 years  no driving…I just get panicked when I’m in the car…so I avoid too much been driven around . I’m fortunate my husband does the shopping ..I also have a bus service for doctor appointments in my town , which I use a few times a year .

 

I’m sure I probably have some underlying condition they can’t find….but I’m sick of doctors…so I’ll just stay as I am .

 

I hope all of us dizzy boaters feel better soon…cause this is a miserable condition.

Stay well everyone.

Much love ❤️ to all

little

Thanks for sharing your experience with us. I’m having similar problems with my vestibular system too.The episodes of ataxia- unbalanced can’t tolerate standing or walking around is the worst! It is very debilitating because we’re forced to lay in bed/ couch until it takes a break. Very frustrating and life changing for sure. I really do hope yours goes away again. You’ve been dealing with this a long time but you also mentioned you have another condition causing it. I do understand that you’re sick of doctors. Especially that they don’t help or can’t help. As a matter of fact, they want to give……wait for it…..benzos or other brain damaging medications to “temporarily fix” things. When in doing a little research, what they give/ offer will make it worse and cause dependency issues. Not to mention, more withdrawals. IMO it’s best to just let this find a way to heal on its on without being disrupted. However long it individually takes. I do understand that you’ve dealt with this so long that you don’t see any hope of being better. This makes me sad for you. I think that if yours went away before then it can somehow again. I’m very hopeful of mine healing and restoring me to normal or better. I have to keep the faith because I believe God is a MIGHTY physician. It’s nothing for him to heal this especially when he is keeping a whole universe in perfect balance. So I’m waiting for it to manifest. This is the hardest thing I’ve ever physically endured but I’m comforted knowing he is with me. Without HIM I don’t have any hope.

Hope you have a better day. Hugs 🤗

[[La...]]

LD,

 

I'm so sorry you are back in bed. So very sorry.  My goodness, you have paid all your dues to the dizziness, boatiness club!  I'm sending you the biggest hug ever.  This is going to pass. You've had some emotional challenges lately and that's bound to be affecting your progress. But you will come back.  We need you!! I find that when I'm anxious my balance goes almost completely out.  Just to make it to a friend's for dinner last night, my entire body betrayed me. My typically low BP spiked up a bit, I felt like couldn't breath for hours, burning and tingling were going bezerk and I couldn't stand more than about a minute at a time. I had to sit on the friends' couch before dinner the entire time.  This happens to me almost every single time I try to go somewhere which leads me to believe that even if I don't THINK I'm anxious, my body thinks I am. It just hasn't figured out how to chill the hell out on its own.  Sooo, all this to say, maybe your current wave and regression is at least partly coming from a place of deep emotions (Zman, etc). 

 

LOVE and prayers to you,

Helen

Thank you sweetheart! It’s terrible for sure especially after I’ve made such progress. I can’t blame it on Zman’s death because this started weeks before I found out about him. It began at 2 year milestone. Lovely gift, right? So all I can do is wait it out.

I also get punished with a wave from doing normal things. Our CNS is so sensitive that it over reacts to simple things as a threat. Although it’s a phantom threat, it doesn’t see it that way because it’s injured. So I’m not surprised that your brain responds the same way too. We’re twins for real, right? Even though I immediately get a wave, I do them anyway because it’s important to show the brain what we’re supposed to be able to do without symptoms. I believe it helps it repair somewhat. It has to heal to the point that it doesn’t see things as a threat. I also think because it’s injured, there’s always a level of anxiety lurking. So when we do something normal, it revs up seeing it as a threat. So I agree with you. It’s all crazy!

Hope it resolves soon for us both.

[[La...]]

Hi Everyone,

I've got some more info to share, since I just came across this paper on PubMed, and it may be about a term that's familiar to people. It's called "Persistent Postural-Perceptual Dizziness", or PPPD. I will put the link here, and also share an excerpt for anyone who wants to read a bit more.

 

https://www.ncbi.nlm.nih.gov/books/NBK578198/#article-131323.s2 

 

Introduction

 

The International Classification of Vestibular Disorders (ICVD) described persistent postural-perceptual dizziness (PPPD) in 2017. Symptoms are portrayed as unsteadiness, dizziness, or non-vertiginous dizziness, which are present most days for 90 days or more and exacerbated by positions such as sitting upright, standing, or walking and visually complex stimuli.[1]

 

The condition is secondary to disruptions in visual processing and postural control mechanisms. It is classified as a chronic vestibular disorder, although there is an association with psychiatric conditions such as migraine, anxiety, and depression.[2] It is more common in women than men. Imaging and testing are often unremarkable, and treatment is often multimodal, including cognitive-behavioral therapy, physical therapy, and serotonergic medications.[3]

 

Etiology

 

The direct cause of the disorder is unknown, but it is thought to be caused by a disruption within or between the visual and postural control mechanisms.[4] The initial trigger may be neuro-otologic, metabolic conditions, and psychological distress. Commonly, the symptoms occur after a vestibular insult, such as vestibular neuritis, BPPV, Meniere disease, or other predisposing medical conditions. PPPD can reflect an incomplete recovery after a vestibular event or chronic lingering problems between episodic vestibular events. Psychological factors contribute to the development of PPPD as it is frequently seen in patients with high anxiety, neuroticism, depression, and high body vigilance.

 

Epidemiology

 

Persistent postural-perceptual dizziness is the most common chronic vestibular disorder in people 30 to 50 years of age.[4][5] The condition is seen in children, and females are affected more often than men, with a ratio as high as 4 to 1.[6][7] More research is needed to better identify affected demographics given this recently defined condition.

 

Pathophysiology

 

The pathophysiology is not fully understood. A neurotic temperament or pre-existing anxiety may predispose individuals. Following a vestibular insult, medical event, and/or acute psychological distress, it is postulated that a patient's dependence on visual-somatosensory cues, environmental vigilance, and changes in posture occurs. This is exacerbated in individuals with high anxiety and body vigilance, as they further focus on their surroundings and pay closer attention to their posture to compensate for the perceived dizziness.[4] Thus changes in posture, the motion of self, and visually demanding environments often provoke the symptoms of dizziness, unsteadiness, and non-room spinning vertigo.[6]

 

History and Physical

 

It is imperative to get a thorough history in persistent postural-perceptual dizziness patients, as the diagnostic criteria include symptoms alone. Given the psychological associations, it is important to inquire about migraines, anxiety, and depression. It is critical to note that PPPD is not a diagnosis of exclusion and that the criteria for diagnosis are quite specific. Vague, nonspecific complaints should be avoided when ruling PPPD in or out. PPPD may also coexist with other disorders. For example, the sensation of veering or swaying to the side is seen, but falls or near falls are not commonly seen in PPPD. Testing is not used to rule in the disorder but rather to rule out other diagnoses.

 

Physical Exam

 

Generally, patients presenting with PPPD will have a normal physical and neurological examination. Head Impulse test, Nystagmus, and Test of Skew (HINTS) exam is indicated in acute settings of dizziness and less helpful in a chronic setting; hence, the HINTS exam will be normal.[2]

 

On a gait exam, a patient may sway, demonstrating a vestibular imbalance or disruption in compensatory mechanisms, but they will often not fall. It is important to rule out other diagnoses or assess for comorbid conditions.

 

Evaluation

 

Persistent postural-perceptual dizziness is a chronic vestibular disorder with a strict diagnosis criterion. The diagnostic criteria for PPPD are described below in the International Classification of Vestibular Disorders. There are five criteria that all must be met.

 

Patients must experience vestibular symptoms for greater than half of the days over 90 days. These symptoms include unsteadiness, imbalance, dizziness, or non-spinning vertigo. The symptoms should be present for hours rather than minutes or seconds. This helps distinguish the disorder from other disorders like BPPV. The severity may waiver, increase or decrease, and change from one person to the next.

 

The symptoms experienced by patients with PPPD must not be provoked by any specific events like BPPV or orthostatic hypotension. However, symptoms of PPPD can be exacerbated by the patient being in an upright posture, being exposed to actively moving visual stimuli (ex: moving cars, being in a crowded mall), and by attempting motion (active or passive) with disregard to orientation and position.

 

Another crucial criterion for accurately diagnosing a patient with PPPD is that it must be precipitated by a condition that causes problems with balance. Conditions that can lead to PPPD are other vestibular syndromes like BPPV, vestibular neuritis, or traumatic brain injury. Other conditions that challenge a health care provider's treatment plan include neurologic and psychiatric disorders, like anxiety and depression. When these conditions are acute or episodic, the disease course may progress to a persistent presentation. In contrast, if the causative condition is a chronic condition, then symptoms can develop at a slower pace and gradually worsen.

 

Functional impairment is the fourth diagnostic criterion. The disorder must be negatively affecting their lives. Commonly patients state that they feel swaying from side to side while they are, in fact, being still. Patients often report issues with walking and driving.[8]

 

The final criteria needed to diagnose PPPD correctly is that it must not be better explained by another medical condition.

 

Recapping the five criteria to diagnose PPPD: non-room-spinning, unsteadiness, and difficulties with a balance must be present for most days for most of the days over 90 days. Symptoms cannot be provoked but can be exacerbated by changes in position and exposure to certain stimuli. PPPD must be preceded by a condition with acute, episodic, or chronic vestibular symptoms. Patients with PPPD must be troubled by their symptoms and must have impairment to some degree. Finally, PPPD cannot be explained by another medical condition or disorder.

 

The diagnosis is made based on the history with the criteria listed above. A physical and neurological exam is generally unremarkable. To assess for comorbid conditions, the workup may include a HINTS test, cervical and ocular vestibular evoked myogenic potentials, neuroimaging of the brain with MRI or CT imaging, and audiogram.[9]

 

Recent research has demonstrated a difference in PPPD patients compared to healthy individuals. Patients with PPPD will demonstrate lower Amplitude of Low-Frequency Fluctuations (ALFF) and lower regional homogeneity (ReHo) in the lower right precuneus and cuneus regions of the brain. The precuneus region is associated with visuospatial imagery, episodic memory retrieval, and self-processing operations. The cutaneous region is often used for visual processing. Thus, supporting PPPD as a vestibular disorder rather than a structural or psychiatric disorder.[7]

 

Treatment / Management

 

There is not a single method for treating PPPD. It is essential to understand that dizziness may arise from central, peripheral as well as vascular conditions. For symptomatic relief of dizziness and feelings of unsteadiness, it has been shown that SSRIs and SNRIs can help. Vestibular balance rehabilitation therapy can help manage motion stimuli by training and integrating the movement of eyes, head, and body movements.

 

The emphasis of this form of physical therapy is to improve both stability and confidence in patients with disorders regarding balance. Cognitive-behavioral therapy has been shown to augment vestibular therapy by decreasing the maladaptive cycle of anxiety and balance control.[10]

 

Differential Diagnosis

 

For PPPD to be diagnosed clinically, the five criteria mentioned above must be met. Failure to meet all five portions of the criteria should prompt clinicians to consider other medical conditions. In the workup of a dizzy patient, it is important to consider post-concussive syndrome, stroke, deconditioning, BPPV, vestibular migraine, panic attacks, Meniere’s disease, cardiac dysrhythmias, autonomic disorders, generalized anxiety, peripheral neuropathy, semicircular canal dehiscence, neurodegenerative disorders, functional gait disorder, and hypotension.[6][11]

 

Prognosis

 

There is insufficient research to ascertain if persistent postural-perceptual dizziness is a lifelong condition. Patients who receive vestibular balance rehabilitation therapy and CBT therapy, along with pharmaceutical management, report a higher quality of life and return to normal activities sooner than those who don’t receive any treatment.[12]

 

Studies suggest that those with intervention acutely following a triggering event fare better than those that receive no intervention following an acute triggering event.[6]

 

Complications

 

Patients suffering from this condition can develop or exacerbate anxiety, depression, and body vigilance. Secondary complications of persistent postural-perceptual dizziness include neck stiffness, gait disorder, fear of falling, agoraphobia, fatigue, and dissociation. Clinicians must understand that PPPD is not a psychiatric condition and that psychiatric conditions can develop due to PPPD making life worse for patients.[6]

 

Fear of leaving home can arise, as patients may attempt to avoid a setting in which their symptoms are exacerbated.[13]

 

Postoperative and Rehabilitation Care

 

Vestibular and cognitive behavior therapy are the best options for helping patients return to their activities of daily living. The earlier a patient receives vestibular and cognitive behavioral therapy, the better their outcome. Vestibular therapy can be helpful for the management of unsteadiness and balance-related issues. In addition, vestibular therapy can help patients manage events that exacerbate their symptoms. Cognitive-behavioral therapy can aid in patients learning to cope with their anxiety related to their symptoms.[12] Thus, it is important for patients with PPPD to receive multidisciplinary and interprofessional care to cope and manage their condition.

 

Consultations

 

A multidisciplinary approach is often recommended between the primary care provider, neurology, otolaryngology, and psychiatry.[12]

 

Deterrence and Patient Education

 

Persistent postural-perceptual dizziness can be a frustrating diagnosis for patients. It affects each patient's quality of life and lacks treatment that offers an immediate fix. Patients need to understand that recovery takes time and a multimodal treatment, including vestibular therapy, cognitive behavioral therapy, and SNRIs or SSRIs.[12] Medication adherence and close follow-up should be encouraged.

 

Pearls and Other Issues

 

Patients that sustain a vestibular insult should be offered vestibular therapy to lessen symptoms and the chance of developing persistent postural-perceptual dizziness. Once PPPD is diagnosed, there is a benefit to adding cognitive behavioral therapy and potentially an antidepressant or anxiolytic.

 

Enhancing Healthcare Team Outcomes

 

Unfortunately, there are no physical exams, laboratory, or imaging findings that are diagnostic at this point for persistent postural-perceptual dizziness.

 

PPPD should be prompted for dizzy patients that have suffered a central, peripheral, or vascular insult that may have impacted the vestibular pathway. In addition, patients that suffered from concussions or whiplash injuries should also be evaluated early for the development of PPPD.[6]

 

Allowing patients to describe their symptoms may serve as the best tool for postulating that PPPD surfaces as a cause for their symptoms. Timing of intervention is crucial for the management of PPPD. It is believed that intervention within the first eight weeks of a vestibular insult gives patients the best chance for PPPD to not be thoroughly intrusive into their daily lives.[11]

 

The approach for PPPD should be made in a multidisciplinary matter, including management with a primary care provider, neurology, otolaryngology, and psychiatry. Patients often benefit significantly from vestibular balance rehabilitation therapy and cognitive-behavioral. Psychiatry can also be crucial in patients learning to cope with their new fears and anxieties.[12]

 

 

[[Be...]]

Lapis, that was a lot to read but sounds like some of us for sure.

[[La...]]

Yeah, Becks, I thought I'd post the whole thing in case anyone wants to read it all. I've come across the term a number of times in the literature on PubMed and elsewhere. I'm guessing that others here might have heard the term or even been told that this is what they have.

[[La...]]

Thanks Lapis. If it is that then it was medication induced but temporary! From what I read in that article, the prognosis is that everyone improves with time but some who have treatments heal faster than those without treatment …that’s good BUT…..

Many of us have tried special vestibular exercises, visual exercises, physical therapy, certain maneuvers, meditation, increasing walking, yoga, diet changes, CBT, mindfulness etc etc with NO improvement or speeding up of healing. Me personally, have tried all of those ( some of them twice! Some I still do because it benefits other things too). Dr Ashton did suggest standing on one leg eyes open then eyes closed might help speed up of the healing of balance. Many tried that as well to no avail. Some like myself couldn’t even stand on one leg…..barely can stand on two 

I had that vestibular therapist call me AGAIN the other day. I told him that you KNOW your therapy didn’t help me so why would I pay thousands more to try it again. I honestly was a little pissed because he called me a month ago and I told him the same thing! They’re after money….simple as that! He said he really wanted to help me…..I was like ok well my ex husband left me for another woman so I don’t have any insurance or money to spare but you’re welcome to come give me free therapy at my home if you insist that it will help this time! Guess what??? All of a sudden he wishes me a nice day and hope I eventually heal and if I change my mind call him. Ha!!!! Funny how saying you don’t have money changes things, right?

I think trying these types of things doesn’t hurt but IMO there’s nothing to do but wait and pray that it goes away for good.

Hugs to all 😘 may today be less rocky for you.

[[La...]]

Hello everyone floaty boaty dizzy swaying bobbing rocking elevator bouncing unbalanced friends! What a mouthful 

I’m having a new shift in my vertigo episodes. I’ve started over the past week noticing gradual changes to the point that now when I lay down ( not every time but often lately) I have sudden vertigo a few seconds especially when first laying down or changing positions in bed. Very scary because it’s coupled with a sudden heart racing as it scared me. A few deep calming breaths and both disappear! Before this new shift, I would have the sudden spinning episodes at random and they occurred very far apart. So this is a new kind of vertigo. I have had a few of these while sitting up so I can’t blame crystal shifts in the ear. Hopefully as quick as this showed up it will go away. Being 25 months off and now back in bed most of the day again….really sucks. Apparently I’m having one of those milestone shifts that is so common around the second year. But, I also read when it clears, people have healed or nearly did. So I’m hoping that’s what is happening to me. This has been the hardest thing I’ve ever endured for this long. All I want is for this to go away for good and my normal life restored. This is not living at all stuck in bed in the house for soooooooo long. But I’m holding on to faith with hope that one of these mornings soon this will be but a memory. I’ll be permanently healed from this. These vestibular issues are the only things keeping me from being completely healed. Why this symptoms last so long I don’t know. But dear God please heal it!

Love and hugs 🤗