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Floaty Boat People - Please help!!!


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So sorry, Hopeful.  I'm with you, still no change for me, I'm afraid!  Like you, 24/7.  It is truly tormenting!

For some reason, if I take a Flexeril (muscle relaxant) it temporarily eases and slows down the flow of the sensation.  Which keeps bringing me back to thinking mine is somehow neuromuscular??!

 

Praying for relief for all of us!  :smitten:

 

Still dealing with balance stuff and rocky sensation...I don't want to talk to soon...but I used to have the rocky sensation almost all the time! Now a couple of days will go by and nothing...it's off and on...let's pray it turns off soon as well as balance issues.

 

Keeping hope alive.

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That's awesome news loving mother! It must feel wonderful, can't wait till I can say the same.

 

Praying it dwindles down...today its back. But again...keeping hope alive. I'm going to get some air later today...taking it easy.

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I had a lot of dizziness throughout tapering and up until about a month ago. Although I still get it, it's not anything like it was before. It was absolutely debilitating before because it was very frequent, along with bouts of terrible vertigo. Between being dizzy and getting vertigo attacks as well, I was mostly housebound. It's cleared up quite a bit. For the first time in over a year I was able to be out and about for two hours yesterday, walking all over. I felt absolutely great! No teetering, no zigzagging on the sidewalk. Before, I would often feel like a spinning top when it starts wobbling and then stops. That's how it was when I'd be walking down the street, suddenly realize that I couldn't walk a straight line, and was too dizzy to go on. The heavier the head pressure, the more dizzy I get. This morning the dizziness is back, along with head pressure. But again, this is a far cry from how it used to be, so there is hope!
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I have terrible intermittent ear pain from both ears.  I've had an ENT tell my my ears are fine and my GP tell me I have an infection.  I just finished a Z Pack, and still have the ear pain.  I'm wondering if the off balance is coming from something wrong with the inner ear that doctors are not able to see.  I've had the ear pain and rocking sensation for well over a year.  I have had times where I think it is leaving only to have it come back full force.
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I had a lot of dizziness throughout tapering and up until about a month ago. Although I still get it, it's not anything like it was before. It was absolutely debilitating before because it was very frequent, along with bouts of terrible vertigo. Between being dizzy and getting vertigo attacks as well, I was mostly housebound. It's cleared up quite a bit. For the first time in over a year I was able to be out and about for two hours yesterday, walking all over. I felt absolutely great! No teetering, no zigzagging on the sidewalk. Before, I would often feel like a spinning top when it starts wobbling and then stops. That's how it was when I'd be walking down the street, suddenly realize that I couldn't walk a straight line, and was too dizzy to go on. The heavier the head pressure, the more dizzy I get. This morning the dizziness is back, along with head pressure. But again, this is a far cry from how it used to be, so there is hope!

 

that's so wonderful that you were able to be out and about for the first time in over a year Terry! :)

 

good going! :clap:

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I have terrible intermittent ear pain from both ears.  I've had an ENT tell my my ears are fine and my GP tell me I have an infection.  I just finished a Z Pack, and still have the ear pain.  I'm wondering if the off balance is coming from something wrong with the inner ear that doctors are not able to see.  I've had the ear pain and rocking sensation for well over a year.  I have had times where I think it is leaving only to have it come back full force.

 

Hey Mama, did your ENT doctor do an examination of your eyes and also try the Epley maneuver? just for my eye examination they could tell that my inner ear is disturbed and when I do the Epley maneuver which is when you put your head back to a tilt if you feel the room spinning a little bit that's also a sign of inner ear disturbance.

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I have terrible intermittent ear pain from both ears.  I've had an ENT tell my my ears are fine and my GP tell me I have an infection.  I just finished a Z Pack, and still have the ear pain.  I'm wondering if the off balance is coming from something wrong with the inner ear that doctors are not able to see.  I've had the ear pain and rocking sensation for well over a year.  I have had times where I think it is leaving only to have it come back full force.

 

Hey Mama, did your ENT doctor do an examination of your eyes and also try the Epley maneuver? just for my eye examination they could tell that my inner ear is disturbed and when I do the Epley maneuver which is when you put your head back to a tilt if you feel the room spinning a little bit that's also a sign of inner ear disturbance.

 

Thanks for your reply Loving Mother,

 

No, my ENT did not examine my eyes.  I plan on having my eyes checked so maybe that will be helpful.  I never have the spinning sensation, mine is more the rocking sensation.

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I've had this for years now. I'm sorry that you all have it too. It's so debilitating. I can't stand up at all. I'm always looking for the nearest place to sit and must look so lazy to others. The worst is when I'm standing and talking to someone and I can't hear what they're saying I'm just thinking that im going to fall any minute. It's controlling my life. 
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Ki3, You have had this for years?? It looks like you just recently stopped the benzo, did you have it in tolerance as well or was it a pre-existing condition?

 

I must have a different manifestation of it than others because I have no problem standing or walking.....all the pushing and pulling is on my upper torso, it makes me sway and move with it.

 

It scare me how long this may go on.

 

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Hopeful-One,

 

This sounds like the way it is for me.  I 'm being pushed and pulled and it is worse after eating.  Do you have it after eating?  It is worse sitting down.

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Mama2, Mine does  not worsen after eating and is WAY worse sitting down and even more so laying. When laying it feels like I am floating above my bed and bopping around, I rock constantly to offset the motion. 14 1/2 months now...... Beyond exhausted.
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  • 1 month later...

It's been a month since the last post.  Just wondering how everyone's getting on?  Any updates?

 

I'm still struggling, unfortunately, same old same old.  This sx, bar none, is the absolute worst for me.  I think I'll be singing in the streets when it finally subsides.

 

Does anyone else feel the rocking totally disappear and they're back to feeling normal just as they're about to doze off?  Or is this unique to me?

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Hi abcd,

 

I can feel my rocking sensation more intense when I first lie down to go to sleep.  Then, after maybe five minutes, it will abate.  It use to be around thirty minutes, so in that regard it has gotten better over the months. 

 

Do any of you have sinus pain along with the dizziness?

 

Mama

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Hopeful one, yes, I had this during tolerance. In fact, I think I got the floaty boat dizziness a few months into use. Klonopin has made me very sick and this was one of the first symptoms that I had. I was taking klonopin to make this symptom go away not knowing it was causing it. My ears ring too. Do you all have those symptoms in pairs?
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I had like a swishing at first, like my brain was moving around in my head, then at 1 year out i actually started getting the floaty boat, almost sea sick feeling,  i actually had to lay down one night and not move for an hour or so because the room was on the verge of moving, i think i get it after eating or if i move to quickly or look back and forth to quickly.  I hope it doesnt stay to long because i didnt start experiencing this until one year off, like the swishing brain changed to floaty boat stuff. wtf
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Hi abcd,

 

I can feel my rocking sensation more intense when I first lie down to go to sleep.  Then, after maybe five minutes, it will abate.  It use to be around thirty minutes, so in that regard it has gotten better over the months. 

 

Do any of you have sinus pain along with the dizziness?

 

Mama

 

Oh, Mama, I'm so happy to hear you're noticing some improvement!  :smitten:

I don't have the sinus pain, but have you tried using the neti pot?  It's helped me enormously in the past.  I'd start off rinsing three times a day for about three days and then down to twice a day and then once a day over a period of a couple of weeks.

 

 

Hopeful one, yes, I had this during tolerance. In fact, I think I got the floaty boat dizziness a few months into use. Klonopin has made me very sick and this was one of the first symptoms that I had. I was taking klonopin to make this symptom go away not knowing it was causing it. My ears ring too. Do you all have those symptoms in pairs?

 

Ki, mine also started while I was on the Clonaz!  And I, too, continued using it only because it seemed to help it a little!  Were you on the K consistently or were you using it erratically ... like me?

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Hi abcd,

 

I can feel my rocking sensation more intense when I first lie down to go to sleep.  Then, after maybe five minutes, it will abate.  It use to be around thirty minutes, so in that regard it has gotten better over the months. 

 

Do any of you have sinus pain along with the dizziness?

 

Mama

 

Oh, Mama, I'm so happy to hear you're noticing some improvement!  :smitten:

I don't have the sinus pain, but have you tried using the neti pot?  It's helped me enormously in the past.  I'd start off rinsing three times a day for about three days and then down to twice a day and then once a day over a period of a couple of weeks.

 

I did try the netie pot.  I used distilled water.  I don't know if it was because the water was too cold, but it burned like crazy for a whole day and a half.  Now I'm afraid to use it again.  My doctor has prescribed Flonase, but I'm scared to use that too.  I used it one time, and I seemed to be more tired than usual.

 

I was just wondering if the sinus's could have an effect on the inner ear and be causing the off balance.  Mine start hurting after eating.  So weird.

 

Mama

 

 

Hopeful one, yes, I had this during tolerance. In fact, I think I got the floaty boat dizziness a few months into use. Klonopin has made me very sick and this was one of the first symptoms that I had. I was taking klonopin to make this symptom go away not knowing it was causing it. My ears ring too. Do you all have those symptoms in pairs?

 

Ki, mine also started while I was on the Clonaz!  And I, too, continued using it only because it seemed to help it a little!  Were you on the K consistently or were you using it erratically ... like me?

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I did try the netie pot.  I used distilled water.  I don't know if it was because the water was too cold, but it burned like crazy for a whole day and a half.  Now I'm afraid to use it again.  My doctor has prescribed Flonase, but I'm scared to use that too.  I used it one time, and I seemed to be more tired than usual.

 

I was just wondering if the sinus's could have an effect on the inner ear and be causing the off balance.  Mine start hurting after eating.  So weird.

 

Mama

 

 

That is weird, but everything about all of this cr*& is weird!  :idiot:  Maybe give the neti pot one more shot (rather that than another rx, right?), and definitely warm up the water first.  I just nuked it for about 20 secs in the microwave and found it very soothing.  You are using their sachets, right?  Not using table salt or anything?

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I did try the netie pot.  I used distilled water.  I don't know if it was because the water was too cold, but it burned like crazy for a whole day and a half.  Now I'm afraid to use it again.  My doctor has prescribed Flonase, but I'm scared to use that too.  I used it one time, and I seemed to be more tired than usual.

 

I was just wondering if the sinus's could have an effect on the inner ear and be causing the off balance.  Mine start hurting after eating.  So weird.

 

Mama

 

 

That is weird, but everything about all of this cr*& is weird!  :idiot:  Maybe give the neti pot one more shot (rather that than another rx, right?), and definitely warm up the water first.  I just nuked it for about 20 secs in the microwave and found it very soothing.  You are using their sachets, right?  Not using table salt or anything?

 

Thanks abcd.

 

Yes I'm using the sachets.  I will warm up the water next time.  Definitely better than the flonase!  Steroids scare me.  I don't believe it is confined to the nose after the way I felt.

 

Mama

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Hi Everyone,

It looks like there are "floaty boat" threads on both the post-withdrawal recovery support forum and the protracted forum AT THE SAME TIME! This symptom is definitely affecting many of us.

 

I'm at 17.5 months off, but I've been experiencing the symptom since April, 2011 while still on clonazepam. The proper diagnosis came two years later, but I was already starting to taper off. I'd had my suspicions about the medication for awhile and a naturopath agreed it could be the medication.

 

Anyway, this is all to say that we're in the "same boat", to use an over-used phrase. I'm taking my cues from -- and finding my hope in -- those who have gone before us. I'm trying to have faith in the power of the brain to recuperate and restore itself to normalcy. Today is a 7 out of 10 on my dizziness scale, which is better than yesterday's 9. It's not linear, so I can't get excited about this little hiatus from intense misery. But it's so much easier to get through the day.

 

By the way, I have a hissing sound in my left ear, and I can only guess that it's part of this whole thing. I just ignore it. The floaty-boat thing can't be ignored, though.

 

Healing wishes to all,

Lapis2

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I had this horrible the first few months along with cog fog....  It mostly went away at 4 months I think???  I get it every once in awhile but mainly its gone....  I know your aren't supposed to drink coffee during this.  And, it does flare up my benzo anxiety for a bit but I started taking it in small doses and for some reason it seems to always help when these symptoms return a bit.  Idk, we are all different it seems what works for some makes some way worse.  So, I am not promoting coffee it just really has helped me with the boat feeling and the cog fog....                    MJ
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I was watching the TV show the DOCTORS and they had a lady with the #boaty feeling#. They said it was due to and acute change in medications. The lady never mention if she was on meds or not.

  Goggle Ataxia...the symptoms are like what you guys are describing.

I have it too, since I change from brand name ambien to the generic zolpiden.

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