Floaty Boat People - Please help!!!

[[Lo...]]

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.

 

Hey Kiddo...here is the crazy part...my taper was a breeze compared to post W/D. I didn't have daily balance issues, I remember some days I had perfect balance. When I jumped on April 30th that is when all hell broke loose. The intensity goes up and down. I had some windows last month where my balance was damn near perfect 

 

It is my one symptom that is with me daily....that and ear/head pressure. The pressure has lightened up some.

 

ENT doc said benzos are bad for the inner ear. It surpresses it so much that once off your inner ear is all over the place trying to relearn how to function without benzos.

 

Praying for my balance to come back...I could not even think of running now but I do leg exercises and need to start crunches to strengthen the core again 

[[La...]]

I'm glad your ENT knew the cause of your problems, lovingmother. It's so disconcerting to have this symptom yet not get the info you need.

 

But we should definitely be staying as strong as we can!

 

[[Lo...]]

I'm glad your ENT knew the cause of your problems, lovingmother. It's so disconcerting to have this symptom yet not get the info you need.

 

But we should definitely be staying as strong as we can!

 

Both her and another ENT are totally against benzos. When I went in summer 2013 another ENT in the same practice told me that I will not get 100% well or regain my full balance until I'm off benzos. He then, "Then the real healing starts." Mind you I have Lyme Disease but I think about 95% of what I'm feeling is benzo W/D.

 

I wish my doctor would ave told me more...or better yet I should have done my research. But I was so desperate  :'(

[[...]]

I went to a full-on multidisciplinary ENT clinic, i.e. ENT, head/neck specialist, neurologist, physiotherapist, etc. and not *one* of them even raised the benzo topic.  In fact, they didn't even ask what meds I was on ... 

[[La...]]

It's unbelievable to me that ENTs can miss it! Benzodiazepines are referred to as "vestibular suppressants" in the ENT textbook excerpts I read on the topic.

 

LM, your ENT's statement is exactly the reason why I keep pushing on! There has to be healing going on, right? It's 20 months for me tomorrow, and I'm completely exhausted by it. But it has to end soon, doesn't it? 20 months off!

 

Take care, Everyone. Keep the faith. Keep putting one foot in front of the other. And do let us know how you're doing. It's good to know we're not alone on this path.

[[Lo...]]

It's unbelievable to me that ENTs can miss it! Benzodiazepines are referred to as "vestibular suppressants" in the ENT textbook excerpts I read on the topic.

 

LM, your ENT's statement is exactly the reason why I keep pushing on! There has to be healing going on, right? It's 20 months for me tomorrow, and I'm completely exhausted by it. But it has to end soon, doesn't it? 20 months off!

 

Take care, Everyone. Keep the faith. Keep putting one foot in front of the other. And do let us know how you're doing. It's good to know we're not alone on this path.

 

Yes...there is healing. He told me to walk to help reset the brain and my eyes, do yoga, tai chi...exercises to help with balance. Vestibular exercises they call them.

 

All we can do is put one foot in front of the other...healing is happening.

[[La...]]

It's amazing to think how strong these medications are! LovingMother, from your signature, it looks like you were on benzos for a relatively short period of time, but the floaty-boat dizziness still has its grips on you months after your taper. As for me, I was on them for 6.5 years total (which includes the taper), so I guess 20 months post-taper isn't that unusual. Still, I continue to have fears that it won't ever go away. Knowing that other BBs have survived this symptom and that it all ended for them is the main reason I can keep going.

[[Ba...]]

LovingMother

 

Thanks so much for putting things in here that help me understand what is going on with my lack of balance. I've hesitatied to do balance exercises because I'm afraid of falling over or looking ridiculous . Now I will forge ahead and do them because I know they will rest my system.

 

A couple of months ago I had trouble sitting in a chair just to eat dinner. I can walk much better now. I'm very excited to the gym and reincorporate balance exercises in my routine. Maybe I will even brave the treadmill. :yippee:

[[Te...]]

Lapis, one day my dizziness finally went away. It's hard to believe that it's still gone. That was in December. I have gotten slight boatiness and wooziness since that time, just a flash of that, but the fact that the dizziness is gone - it just disappeared!! It was my worst symptom. It was so bad that I was afraid to go out and get groceries and do errands. I had to stay close to home. I would have it for 20 minutes at a time and be stuck somewhere when it happened. There would be a short warning and then that was it, full-on dizziness where I couldn't walk or do anything.

 

I had that for 18 hellish months.

 

I really hope that yours, Lapis, and everyone's here goes away!!! It's very, very difficult to take, and it's really debilitating to say the least.

[Guest [Mo...]]

Every time I jump on a treadmill I get pins and needles and I sweet because it scares me!! I run miles and that machine is scary right now I have weird balance

[[La...]]

Lapis, one day my dizziness finally went away. It's hard to believe that it's still gone. That was in December. I have gotten slight boatiness and wooziness since that time, just a flash of that, but the fact that the dizziness is gone - it just disappeared!! It was my worst symptom. It was so bad that I was afraid to go out and get groceries and do errands. I had to stay close to home. I would have it for 20 minutes at a time and be stuck somewhere when it happened. There would be a short warning and then that was it, full-on dizziness where I couldn't walk or do anything.

 

I had that for 18 hellish months.

 

I really hope that yours, Lapis, and everyone's here goes away!!! It's very, very difficult to take, and it's really debilitating to say the least.

 

AWESOME NEWS, TERRY38! Omigosh! That's great! It just went away? Congratulations! I was trying to figure out how long you were on the meds in total, but I'm not really sure. In any case, 18 months of dizziness is a long time, and it must seem like a miracle that it's gone.

 

It's my 20-month anniversary today, and I'm going to try to pull some hope out of your great story. I'm having a horrible, teary day -- very painful -- so I'm trying to smile through my tears.

 

Thanks for letting us all know, Terry, and I wish you all the best. May the dizziness never, ever come back!

Lapis

[[Te...]]

You'll have freedom from the dizziness, Lapis!!! I thought it would never go away or that there was brain damage or some deeper issue. But I'd never had anything like this prior to benzos. 

 

I do wonder at times if it's going to come back full force one day. I'm still looking over my shoulder every step of the way...Once something like this grips a person for so long, it's hard to shake that thought loose.

[[La...]]

I totally understand why you'd feel that way, Terry, but even if it comes back for a little bit, I doubt it would stay very long. You've obviously beat the beast into submission. I really am SO pleased for you, and thanks for kind, supportive words too. Yours is exactly the kind of report we all need to hear, and I hope to be able to do the same at some point soon.

 

Onwards you go! If your other symptoms aren't too bad, then you must feel really free. Honestly, it's hard to imagine what it might be like, but I'm going to try. 

[[Te...]]

Lapis, thank you for your very kind words!!!

[[Te...]]

Lapis, congratulations on your 20-month anniversary today!!! 

[[...]]

Wow, nice to read some positive floaty boat stories!  Very happy for you, Terry, may it be gone for good never to return!   

 

And Bailey, glad to hear you're seeing some improvements too.  Trouble sitting in a chair just to eat dinner, yep, that's still me, I typically eat standing up and walking around!    Takes the pleasure out of eating, doesn't it! 

Good luck with the treadmill challenge, go slowly at first, lol,  and do keep us posted.

 

Thank you both of you for sharing, we all need stories of hope to keep us going.

 

Congrats again on your 20 months, Lap! 

 

[[La...]]

Thanks, abcd! It's kinda like 20 laps for Lapis! I used to swim laps a lot. Miss it. Those are good water memories. These floaty-boat sensations suck, though. Blech. Ick. Yuck. 

[[Te...]]

Thanks so much, abcd!!!

[[La...]]

Lapis, congratulations on your 20-month anniversary today!!! 

 

Thank you, Terry! I guess I should be celebrating, not crying. I'm trying to focus on the fact that with each day, we're all closer to the end than the beginning. It's true, isn't it? But still, it would be good to know when the end will come.

[[Te...]]

I agree, Lapis! We're closer to the end, but when that will be is anyone's guess...

[[Lo...]]

It's amazing to think how strong these medications are! LovingMother, from your signature, it looks like you were on benzos for a relatively short period of time, but the floaty-boat dizziness still has its grips on you months after your taper. As for me, I was on them for 6.5 years total (which includes the taper), so I guess 20 months post-taper isn't that unusual. Still, I continue to have fears that it won't ever go away. Knowing that other BBs have survived this symptom and that it all ended for them is the main reason I can keep going.

 

Hey Lapis, I was on benzos from start to finish for 13 months. March 2013-April 2014.

[[Lo...]]

I agree, Lapis! We're closer to the end, but when that will be is anyone's guess...

 

Terry...did I read right? The dizziness is gone!!!! I know you dealt with that a very long time! Congrats! How long has the floaty boat stuff been gone!

 

That's inspiring! 

[[La...]]

Hi Floaty Boaters!

I came across this article written by a guy who, at the time of the writing, was experiencing tolerance withdrawal. Clearly, he's got the "floaty boat" thing going on quite badly, among other symptoms. I'd like to share the article here, since there are some very good descriptions of the sensations we're all experiencing.

 

http://www.spasmodictorticollis.org/index.cfm?pid=169&pageTitle=The-Dangers-of-Benzodiazepines

 

 

[[Ba...]]

That was a good article, Lapis.

[[ma...]]

Thanks for the article Lapis.

 

I would like to know if anyone has the floaty boat more intense when you lie down at night for sleep, then it will abate after a few minutes.  Mine is also not so much in the mornings, but more so after eating around lunch and at night, anyone else?