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

[[La...]]

Yes he said even more patients now are having this condition because of medications. The main ones are benzodiazepines and antibiotics! He said It's on the rise from benzo use. Matter of fact his advertisement for vestibular therapy says " are you unbalanced or dizzy from taking a medication? Maybe we can help with vestibular therapy."

Did your therapy help you at all?

[[Tr...]]

Wow LadyDen that’s crazy! Someone seeing a trend with meds and balance issues is promising.

 

[[La...]]

Yes he said even more patients now are having this condition because of medications. The main ones are benzodiazepines and antibiotics! He said It's on the rise from benzo use. Matter of fact his advertisement for vestibular therapy says " are you unbalanced or dizzy from taking a medication? Maybe we can help with vestibular therapy."

Did your therapy help you at all?

 

Wow, that's unbelievable, LadyDen! I wonder if your physio can report that sort of thing, e.g. in a medical journal article, on the news or elsewhere. That's a really important observation. If he can quantify it in numbers, that would make it that much more real.

 

As far as the vestibular rehabilitation exercises go, no, I didn't benefit from them in any substantial way. I did them five times a day for two separate three-month stints. During the second three-month period, I was also doing a taper of my antidepressant medication (I had tapered off the benzo about 10 months before that), and during that time, my symptoms were actually worsening. I don't think it was the vestibular rehab that made me dizzier, though. I really think it was all about the antidepressant withdrawal. In any case, I consulted with my doctor about what was happening, and it made sense to just stop doing the VR at that time. In total, I did six months of it, five times a day. It was a lot.

 

I've continued to try to stay mobile (to the degree that I can) with regular-type exercises, and I never restrict my head movements or lie down during the day. So, that's the best I can do for now.

[[La...]]

Wow LadyDen that’s crazy! Someone seeing a trend with meds and balance issues is promising.

Yes it is great that it's acknowledged and he's trying to help do something about it! When I read his advertisement I was shocked! I called him immediately. I wish I could post the article/ advertising that he wrote.

[[La...]]

Lapis, he told me that restricting normal head movements is the wrong thing to do. So you're doing the right thing. He said if you do that to prevent increasing the dizzying then you're actually making it worse because the brain needs the experience to learn to compensate. If you limit those movements that make you more dizzy or boaty then eventually you'll have to perform them ( bending your head down, turning quickly etc). When you do, it can prove to be a disaster or even injury yourself because you've been avoiding it for so long. He said its best to tackle it head on as best as you can continuing to let your brain experience it. But this must be done subtily to not have a person to the point that they're more debilitated.

[[La...]]

Hey LadyDen,

In my case, there's no specific movement that makes my disequilibrium worse. It's just there as it is -- some days worse, some days better (ranges from 6 on a better day to a 9.5 out of 10 on a bad day). I've never restricted my head movement because it's never been an issue for me.

[[La...]]

Yes you've been dealing with this a long time. I hope you wake up one morning soon and POOF it's gone! And I wish it for me too. We can exercise get therapy etc but time will heal us. Some with longer times than others. I'm 8 months off today. This is my worst symptom but I'm fighting it. Doing all I can to help myself while I wait for it to go for good. Each day I say....it might be gone today! 

[[La...]]

Oh, I definitely wish it for you, me and everyone on BB who is experiencing this! "POOF, it's gone!" sounds fantastic! In the meantime, yes, we have to do whatever it is we can to stay upright and functional. If you learn anything else through your physiotherapist that you think could be helpful to others, please do share it here, LadyDen.

[Guest [pa...]]

Oh, I definitely wish it for you, me and everyone on BB who is experiencing this! "POOF, it's gone!" sounds fantastic! In the meantime, yes, we have to do whatever it is we can to stay upright and functional. If you learn anything else through your physiotherapist that you think could be helpful to others, please do share it here, LadyDen.

Does anybody just wake up one day and "POOF, it's gone!" eh? I've seen some timelines, like 3 years, and 7 years pop up. It's still incredibly long, but it's beter if it goes away even then, than never.

[[La...]]

Oh, I definitely wish it for you, me and everyone on BB who is experiencing this! "POOF, it's gone!" sounds fantastic! In the meantime, yes, we have to do whatever it is we can to stay upright and functional. If you learn anything else through your physiotherapist that you think could be helpful to others, please do share it here, LadyDen.

Does anybody just wake up one day and "POOF, it's gone!" eh? I've seen some timelines, like 3 years, and 7 years pop up. It's still incredibly long, but it's beter if it goes away even then, than never.

 

Actually, I spoke to Baylissa Frederick years ago (a woman who counsels others with benzo withdrawal and who went through it herself), and she recounted to me that, for some people, yes, the symptoms went away relatively quickly and unexpectedly. Personally, I think I only heard of it a couple of times, but I don't remember which BBs those ones were. It just seemed unbelievable at the time.

 

 

[[La...]]

Lapis I wanted to step in to say hello. I hope you and whoever reads this are doing well. I don't recall if I told u but I've been absent because of a death in my family. But I'm back now. Just needed to take a few days to be ok. Hugs to you!

How have you been?

[[La...]]

Lapis I wanted to step in to say hello. I hope you and whoever reads this are doing well. I don't recall if I told u but I've been absent because of a death in my family. But I'm back now. Just needed to take a few days to be ok. Hugs to you!

How have you been?

 

Oh, LadyDen, I'm really sorry to hear that! I haven't been around a lot either. Just have lots to deal with. Anyway, I'm sending you hugs as well and hoping you're hanging in there.

[[bo...]]

I was wondering is  our sxs the last to go ?

I feel the more I taper the more pronounced it get...

 

[[La...]]

I was wondering is  our sxs the last to go ?

I feel the more I taper the more pronounced it get...

 

Hi bonty,

To my knowledge, there's no clear route that we all take. It's a very individual thing and depends on many factors. We can't really predict anything.

[[Mi...]]

How many on here, the dizziness/vertigo folks had the room spin ? You know where out of nowhere things start to whirl around, the room is spinning and you have to hold on and hold still until it stops?

 

It happened to me 2x about 6 months apart ... It happened when I rolled over in bed.

 

At 21 months off I still get a tiny bit of dizziness/vertigo (not the room spins) when over tired, screening too much, stressed, but it goes away when I rest for a bit usually. -

 

But that room spinning.  It's been a couple years ago now. It happened for me during tolerance.

 

Anyone get those room spins? I'm just curious.

I did. They went away with time.

 

 

[[La...]]

How many on here, the dizziness/vertigo folks had the room spin ? You know where out of nowhere things start to whirl around, the room is spinning and you have to hold on and hold still until it stops?

 

It happened to me 2x about 6 months apart ... It happened when I rolled over in bed.

 

At 21 months off I still get a tiny bit of dizziness/vertigo (not the room spins) when over tired, screening too much, stressed, but it goes away when I rest for a bit usually. -

 

But that room spinning.  It's been a couple years ago now. It happened for me during tolerance.

 

Anyone get those room spins? I'm just curious.

I did. They went away with time.

 

Hi Miss Fortitude,

I haven't had any spinning at all. I've only had the rocky, floaty boaty type of disequilibrium.

 

Spinning is usually referred to as "vertigo", by the way, so if you're looking it up for any reason, that's probably the best word. There's a common, curable type of dizziness called "Benign Paroxysmal Positional Vertigo", and it comes on when someone moves their head in a certain way or turns over in bed. There may be nausea or vomiting involved as well. And there may be eye symptoms called "nystagmus" too. A doctor or physiotherapist with training in this area can make the diagnosis and do a certain kind of maneuvre that can help normalize things. Unfortunately, there doesn't seem to be a similar cure for the floaty-boaty type of dizziness, though.

 

 

[[Mi...]]

How many on here, the dizziness/vertigo folks had the room spin ? You know where out of nowhere things start to whirl around, the room is spinning and you have to hold on and hold still until it stops?

 

It happened to me 2x about 6 months apart ... It happened when I rolled over in bed.

 

At 21 months off I still get a tiny bit of dizziness/vertigo (not the room spins) when over tired, screening too much, stressed, but it goes away when I rest for a bit usually. -

 

But that room spinning.  It's been a couple years ago now. It happened for me during tolerance.

 

Anyone get those room spins? I'm just curious.

I did. They went away with time.

 

Hi Miss Fortitude,

I haven't had any spinning at all. I've only had the rocky, floaty boaty type of disequilibrium.

 

Spinning is usually referred to as "vertigo", by the way, so if you're looking it up for any reason, that's probably the best word. There's a common, curable type of dizziness called "Benign Paroxysmal Positional Vertigo", and it comes on when someone moves their head in a certain way or turns over in bed. There may be nausea or vomiting involved as well. And there may be eye symptoms called "nystagmus" too. A doctor or physiotherapist with training in this area can make the diagnosis and do a certain kind of maneuvre that can help normalize things. Unfortunately, there doesn't seem to be a similar cure for the floaty-boaty type of dizziness, though.

 

Hi Lapis ! How are you?

 

Thanks for replying! I am familiar with BPPV. Had all the tests. Learned the Epley. Done it a few times. I did have nystagmus with my spins. But, the 24/7 boaty i used to have too. That's why I think it's the benzos that can cause it too for some people . Because the Epley seemed to help, I guess. Unlike many others who said the Epley cured it right away and they went on with their lives. It did not happen for me like that. The spins were gone, but I was still dizzy fragile and nauseated for days. And, that 24/7 boaty feeling hung on for a little over a year. It don't have it all the time now. Just a little bit some days.

 

I believe in the bppv and the crystals/otiliths and stuff, but I also believe benzos have a huge play in it for some folks.

 

I was just curious about the room spins here on bb. How many get that symptom. I've read through just a bit the 700+ pages here on this blog, and I see it's common.

 

Thanks !

Take care!

[[Be...]]

That rolling over in bed with the ear crystals moving will pass on its own.  I had it years ago and it resolved on its own.

[[Ma...]]

I have not been here for a long time.  I see people talking about the vertigo--dizziness--etc.  I started withdrawing from clonazepam at the beginning of 2016. The vertigo became horrible and incapacitating very soon and was the worst system--along with this came panic attacks.  After so much searching and going down the wrong path---I knew the vertigo was not the inner ear stuff---I saw a neurologist and had an MRI and had physical therapy and nothing helped.  I learned that it was because my central nervous system was so crapped out after 8 years after taking clonazepam that a "wonderful" psychiatrist prescribed for me.  I finally found a doctor to help me withdraw. He really could do nothing except hold my hand and listen to me and tell me I was the perfect patient.  I walked and walked, did puzzles, read, listened to music---lost my mind and my life.  It was finally having my central nervous system heal that got me better.  I have had other issues in the past years but never vertigo again.  I mostly feel wonderful now.  I wish I had known about things like clonidine to help.  And some other antihistamines that are recommended. 

 

I was recently in the ER for something else and was explaining the "adventure" I had had withdrawing from clonazepam which nearly killed me.  The doctor said oh you cannot do that yourself---you need total medical supervision for that.  No kidding.  I told her, well too bad most doctors have no idea how deadly benzos are--toooooooo many simply do not get it how just a small amount over a short period of time can ruin your life.  I wish more doctors knew this.  I now in a special situation will take a small amount of ativan for severe stress or panic in a medical sitiuation and I know it will be fine.  We are all in trouble because most of the medical community out there simply refuses to acknowledge how dangerous benzos are.  In the right situation they are perfectly fine and work well.  But God help us, doctors are mostly going to kill us if we do not know what is going on.  I am living proof you can get through this.  It almost killed me.  But I am good now.

[[La...]]

So nice to hear from other people suffering from this! I have only been experiencing it for a week, and I am completely miserable. Is there anyone out there who has completely recovered from this symptom? And if so how long did it take? Also, did the off-balance feelings get worse each time you lowered your dosage?

[[La...]]

I started experiencing the dizziness a week ago when i lowered my dosage, and it is pretty constant all day every day. And I would say the intensity is always about the same. It’s miserable!

[[La...]]

So nice to hear from other people suffering from this! I have only been experiencing it for a week, and I am completely miserable. Is there anyone out there who has completely recovered from this symptom? And if so how long did it take? Also, did the off-balance feelings get worse each time you lowered your dosage?

 

Hi La8,

There are definitely people who have recovered from this symptom, but they usually move along and don't do a lot more posting. So, it's really hard to say how long it takes for each person to get better from this particular thing. I guess it's like the other symptoms, in that everyone is different when it comes to how long something lasts and the patterns it does or does not follow.

 

You might want to check out some of the earlier pages of this thread where people were posting a lot. It's been rather quiet around here lately.

[[Ma...]]

La8--and others suffering.  As I wrote above, I did recover--it took over a year and it almost killed me, but I made it.  As you are seeing benzos are no joke and yet doctors continue to prescribe them with no warnings.  I know now I could take a small dose of something before surgery or a horrible event---it would work the way benzos are supposed to work.  But more than a certain time, they wreak havoc on the central nervous system.  Everything they were meant to help are the exact things that happen as withdrawal symptoms.  If a doctor takes it seriously and knows what he or she is doing, there are some remedies that can help the symptoms.  The thing is, it is hard to find anyone who has the knowledge and ability to do it.  I had a doctor following me and he really could no nothing but he saw me a lot and helped me to keep doing things to myself to heal my central nervous system.

I recently have run into some doctors who think they recognize the danger of withdrawing, but I find they want to do some 30 or 60 day in-patient detox which for God's sake--who can afford or can fit it into a life.  I don't come back here too much because there is not a lot I can say.  There is hope, but it took listening to my own body, finding ways to heal, putting one foot in front of the other----it is awful.  It is good to have the support of other voices here---but one reason I do not read this too much is that there are way too many voices, opinions, horrible things to tell you.  It is not productive.  But hang in there.  Do you have a doctor or medical person who will listen to you?  My biggest problem at first was that nobody would believe me for what I was suffering.  I hope there is someone for you.

[[Ko...]]

It’s been awhile since I posted, someone sent me a PM so I thought I’d also let you all know how I’m doing.

I’m into my 8th year and still suffering from disequilibrium.  I use a 4 wheel walker most of the time. It does feel like I’m just going to fall over, even though I don’t.  I’m even off balance when I’m sitting.  I used to rock when sitting, but don’t seem to do that so much anymore. I also get Akathisia quite often which can last several hours. This causes me to pace back and forth since I can’t sit still.  Then I still have burning/stinging shins and feet. Unfortunately, this occurs at night and makes it difficult to sleep. Consequently, I do most of my sleeping during the day.  I’ve been to several neurologists but they can’t find

anything wrong. Only one believed that benzodiazepines could have caused this.  I’m hoping this isn’t permanent.  I read about someone who finally got better in their 12th year. I hope it doesn’t take that long.

 

Korbe

[[jj...]]

Hey fellow floaty boaters. It's been a while since I've been on the site, but I came back to see if anyone had posted on ketamine assisted therapy for PTSD and thought I'd pop in and give a quick update. I'm not sure I'd ever feel confident to make a success story given my own journey with all of its setbacks but I will say that over the last few months my dizziness has really cleared. It was one of my most disabling symptoms (along with akathisia/paresthesia) since 2016 and something that I dealt with every day. About four or five months ago, things started to shift and it has improved a lot. I still have some dizziness but its very minor and most of the time I'm not aware of it. Might come back again like it did before, so I'm not getting overly excited, but any improvement is welcome. I'm still susceptible to bouts of head pressure and paresthesia, but it's mostly now during periods of higher stress. Not sure if that will change but most days feel workable as long as I don't over do it. Wishing you all peace, healing and wide open windows.

 

jj