Floaty Boat People - Please help!!!

[[Ki...]]

I have this symtpom as well.....it comes and goes but is truly my most feared and debilitating symptom. It's horrendous and my apologies to all of you who have suffered with it.

 

I'm not sure Ataxia is what's happening though, the definition/symtpom list doesn't fit, at least for me.

 

http://i.imgur.com/U88GLfPl.jpg

 

My symptoms seems to be more of a "pushing/pulling" feeling and a "swaying". Also feels like when I walk the floors are "moving" or "uneven". Occasionally I have a "tipping over" feeling or like I'm "dropping". I don't feel particularly uncoordinated, I don't have an issue with fine motor skills. I also often experience a surge in adrenaline when it comes on, followed by anxiousness and panicky feelings. This symptom was mostly gone from Aug-Nov and came back with a vengeance. It's been almost 4 weeks now and it's really getting my spirits down.

 

Hope those of you who were suffering previously have found some relief 

[[La...]]

Hey Kiddo,

We were talking about this very thing on another "floaty boat" thread. It seems that "ataxia" can the difficulty that people have when trying to walk, but I think your descriptions of the sensations are excellent and are shared by the rest of us who suffer from this symptom.

 

It's still brutal for me, although it's not always at the same intensity. Today's an 8 out of 10 on my scale, while yesterday was a 9. I've had 9.5s too, and they were horrific. It's an exhausting, debilitating symptom, and I hope that it goes away for everyone ASAP! I agree that the floaty-boat sensation can make me feel really anxious too, since it's beyond unpleasant to be rocking and rolling and floating all the time.

[[...]]

Okay, here, I've kept this tab open for weeks, meaning to post it again.  Thanks again to you, Lap, for digging up this treasure.

http://www.benzobuddies.org/forum/index.php?topic=15617.msg240189#msg240189

 

This person gives great descriptions of the various forms of this Gd awful sx, which I think we can all find helpful.  (Oh, and no, I don't believe ataxia fits either).

 

Moving floors--when i walk it appears the floors move

Quick Sand--feels like my legs are being pulled into the ground/floor

Force Field--like an unseen force is pushing my head or limbs in different directions.

Rock the Boat--when brushing my teeth the sink moves like i am on a boat.

Out to Sea--worse than the above; feels like i am hanging on to the side of the boat drifting out to sea.

Wobbly Head--even though the mirror tells me my head isn't moving, it feels like it is doing figure eights on my neck.

Magic Carpet Ride--when i sit propped up on my bed or couch, i feel like i moving in waves on the carpet ride.

 

Maybe we can all give comparisons and updates. 

 

Here's mine:

 

Moving Floors - Don't believe I ever really had this.

Quick Sand - Used to get the sinking foot often and/or sinking into the chair or bed.  Eased up during taper, don't get it that often anymore.  This is the only time I get the brief panicky feeling, but it's over within seconds.

Force Field -Yes.  Bad! 

Rock the Boat -Had this mildly in the past, I hardly ever get this at all now! 

Out to Sea -I think she's referring to standing or walking, which THANKFULLY I do not have!

Wobbly Head - My worst sx of all, but not quite the way she describes it.  I have actual movement with the whole push/pull muscle pulsation crap going on and a slight tremor from my head to my toes.  Lovely!

Magic Carpet Ride -Yes.  Bad, Bad, Bad!  As above, with actual movement too.

 

Wishing good healing to everyone.  Kiddo, so sorry yours has returned ... hopefully it's that last blast before it leaves you completely!  So very sorry for everyone's suffering, this truly is one killer of a symptom to endure day in and day out! 

 

[[...]]

I seriously dread brushing my teeth. The floor is tilting and the sink is moving and my head starts to spin. I had this in tolerance and it's still here at 5 months off. I look forward to this going away.

[[La...]]

Oh, Ki3, I can relate. EVERYTHING is hard to do. There are many "regular" things that I dread now. Today's a slightly less dizzy day for me but I never get two days in a row like this. Maybe soon? Oh please!

[[fl...]]

Hey buddies,

 

We have been posting about this on the protracted page as well. I am 17 months out and now and the boat and spinning has hit me hard since my back operation 4 months ago. I feel so sick all the time. My eye focus comes slow. The worst part is how tired it can make you feel. My wife is complaining to me all the time about not helping out and sleeping all the time. I missed out on about 10 months of sleep during acute. You would think I could catch up a little but no. No breaks for dad. This has got to stop at some point right? I'm going for a test on the 17 to tell me if it has something to do with my ear canal. I have had this test in the past for another reason and it is not fun. The shoot air or water in your ear and it makes the room go out of control. It has something to do with the crystals in the ear. The doc thinks maybe mine are out of whack while in surgery for over 2 hours for my back. I hope that's all it is because they would then perform what is called the eply maneuver to get rid of it. Maybe benzos could have screwed up my crystals as well. Be well buddies.

 

fg

[[La...]]

Hey FG,

Good luck with the test! I hope it's not too uncomfortable. I think it's a good thing to eliminate any possible other causes for what you're experiencing. If it IS the crystals, you can get that treatment and move on in your journey. If not,  the rest of us will still be here to support you. Either way, I wish you well.

[[Te...]]

I started getting dizzy when I was in w/d from Ativan and didn't know what was happening. But when I switched over to Klonopin, it became extremely bad. Altogether I've had it since June of 2013. It's gotten better, thankfully, but I still don't feel confident when I go anywhere. Almost every day I have it. It's been my worst symptom.

[[La...]]

I have wondered whether the type of benzo we took has made us more likely to get this particular symptom. It seems like a lot of people have it who were on clonazepam/Klonopin and lorazepam/Ativan. However, it may just be that these meds are the most widely prescribed of the benzos. In any case, I guess it doesn't help us now.

 

I had a slightly less-dizzy day yesterday, but it worsened in the evening and throughout the (sleepless) night. Today it's brutal again, and I'm trying to steel myself for another day of gripping onto the handles of a walker. It's so demoralizing and scary.

[[...]]

Terry, I'm glad to hear you say it's getting better, that's such a good sign.  I think that's all we really want at this point, right? 

 

Lap, hang in there.  Are you able to pinpoint any triggers for when you have less or more dizzy days?  Sleepless nights, etc?

 

Ki3, sorry you're still struggling.  On a positive note, Lovingmother has recently seen a few good days, she's 7.5 mths out.  So, hopefully, it's just a matter of time for all of us!

 

[[La...]]

Thanks, abcd. I can't pinpoint any triggers, actually. It seems like it has a life of its own. One day I got stuck in the elevator of our building, and despite my anxiety about that, the dizziness remained at a decent level the whole time we waited for the technician to free us (more than an hour). But yesterday, I had a friend over and actually shared a meal with someone (nice for a change), and my dizziness level went up in the evening. So, to me, there's no logic. The brutality of it is beyond my wildest imagination -- and my imagination is pretty wild. 

 

It's nice to hear that others are having some improvements. It is the only thing that gives me hope now. I'm aware that having less than 3 hours' sleep alters my thinking towards the negative, but it's the third (or fourth?) time this week. I'm shattered.

 

 

[[Ki...]]

Has anyone consistently tried the "brain retraining" exercises for dizziness/vertigo/floaty boat?

 

Loving Mother, I believe, has been doing these with a PT. Are you seeing any improvement from the exercises or do you think it's just time?

 

http://vestibular.org/sites/default/files/page_files/Documents/Balance%20Retraining_Yardley.pdf

[[La...]]

Hi,

I did those for months at various times but had no benefit. The last time I did them, I was in the middle of a Prozac taper, and the dizziness got so bad that I had to stop doing the exercises. In my experience, they don't address the kind of dizziness I have. They're useful if a particular head motion instigates the dizziness, but I'm just floaty-boaty all the time. I SO wish they worked, since it would be wonderful to see that something I do can improve things.

[[Ki...]]

Hi Lapis,

 

That's a drag....this sure is a slugfest. Is yours more of an off-balance/floaty boat or more of a vertigo/spinning issue? When did it start?

 

[[La...]]

Hi Kiddo,

It's completely floaty-boaty disequilibrium. There's been so spinning at all. From what I see, the words "dizziness", "vertigo"  and "disequilibrium" often get used for a variety of sensations. My physio has suggested that what I have is properly called "disequilibrium".

 

Anyway, it started in April 2011, when I was still taking clonazepam regularly and lorazepam "as needed", i.e. once in awhile. The diagnosis took two years and tons of testing, but it was finally confirmed to be caused by the benzodiazepines in March, 2013. I was already suspicious by the time I got the diagnosis, so I'd started a taper (found Ashton Manual online) in Sept., 2012. The SSRI likely worsened things, and I had to taper that earlier this year. My disequilibrium went through the roof at that point.

 

I'm hoping the end of it all is near......

 

 

[[Ba...]]

It gets better. It can make me slightly nauseous when I'm walking.

[[Lo...]]

Hi Kiddo,

It's completely floaty-boaty disequilibrium. There's been so spinning at all. From what I see, the words "dizziness", "vertigo"  and "disequilibrium" often get used for a variety of sensations. My physio has suggested that what I have is properly called "disequilibrium".

 

Anyway, it started in April 2011, when I was still taking clonazepam regularly and lorazepam "as needed", i.e. once in awhile. The diagnosis took two years and tons of testing, but it was finally confirmed to be caused by the benzodiazepines in March, 2013. I was already suspicious by the time I got the diagnosis, so I'd started a taper (found Ashton Manual online) in Sept., 2012. The SSRI likely worsened things, and I had to taper that earlier this year. My disequilibrium went through the roof at that point.

 

I'm hoping the end of it all is near......

 

Hi Lapis, I hope you're feeling better. Last month I experienced windows...I mean a couple were close to normal. Even my balance improved. It was refreshing. I had a nice window on my birthday last Friday...but got a severe cold the next night that went straight to my head and boom...balance was wickedly off.

 

My neuro doc said my cranial nerves are affected by viruses (another story) the benzos surpressed the issue and once off made everything worse.

 

It's all right sided too. My left inner ear is fine, got a weird test done where they shot water into my ears. If you get dizzy then your ears are fine...if not then something is up. My right ear did not respond :-(

 

Keep your head up...its super hard...it really is. There are success stories of folks who were in wheelchairs, walkers, clinging onto the walls for dear life when walking and now they are fine!

 

Praying for us all. 

[[La...]]

Hey LM,

Thanks for the update. I've had a few windows too, but it's all over the place. I've heard those success stories too, so that's why I'm hanging on.

 

Take care!

 

[[Ki...]]

I am 39 days off that nasty stuff..still keep feeling couch is moving.  Rocking boat feeling. ear pressure like when plane is descending . It is very encouraging to hear it ends

Thank you. .so tired of it.

Healing to all..

[[Lo...]]

I am 39 days off that nasty stuff..still keep feeling couch is moving.  Rocking boat feeling. ear pressure like when plane is descending . It is very encouraging to hear it ends

Thank you. .so tired of it.

Healing to all..

 

I still have ear pressure at almost 9 months off...sigh. It's a little better than before and only the right side. It will get better but it feels so weird.

[[La...]]

I've had hissing in my left ear since the beginning (that's years), but really, if I have to put up with hissing, I'm okay with that. I just want my balance back! I need to be able to walk.

[[Ki...]]

Lapis and LM - did you guys ever have long breaks in disequilibrium or did you have it essentially non-stop throughout taper and post-taper?

 

I ask because I don't seem to have this all the time. It varies in intensity and sometimes it's completely gone.

 

Have you guys ever had a break? Not including windows of course.

[[La...]]

In my case, I've had it every day since the beginning, i.e. for the last two years of taking the medication, throughout the taper and now, almost 20 months post-taper. It's not always the same intensity, though, and I've been recording the daily levels on a scale of 1-10 for a very long time. I've also been charting it on a graph on a monthly basis, which makes it easier to share the info with health professionals and others. Today, for instance, was a 7 out of 10 for most of the day, but it increased to an 8 in the evening. I'm hoping that the 9s will be gone soon, since they're quite unbearable. Give me 6s!

 

I've had fewer 9s this months than most of the last many, many months, so perhaps it's the beginning of the end of it for me. Oh please, oh please, oh please!!! It's been a horrific experience for me, and I'm so ready to get back to life.

[[Ga...]]

I've had hissing in my left ear since the beginning (that's years), but really, if I have to put up with hissing, I'm okay with that. I just want my balance back! I need to be able to walk.

 

me too Lapis!

 

ear hissing i can take, just wish i could walk a straight line again

[Guest [Mo...]]

Running helps a lot. I'm pretty sure you lose a lot of leg muscle and tendon function sometime during this process but since I began running again I feel strength and nerve sensations returned In my feet. My feel feel amazing right now, but that can change in a second so knock on wood. I'm being pulled left and right all day. I haven't had a normal day as of yet but I'm holding g out and using my legs all the time fingers crossed