Floaty Boat People - Please help!!!

[[Ho...]]

Thanks for the encouragement Pretty. You are right, I need to be true to myself and still be sensitive when possible to others. I do get support on a wonderful small private FB group but sometimes I need more.

 

I am thrilled you are getting out running errands and such. It must feel amazing! I still cannot drive due to DR; husband still shops and does errands because I am just too spacey! I know what  you mean about exercise; I am in such a rigid state from anxiety and trying to control my body against the boatiness I cannot relax into any type of exercise. I feel like I am 80 years old!

[[pr...]]

Thanks for the encouragement Pretty. You are right, I need to be true to myself and still be sensitive when possible to others. I do get support on a wonderful small private FB group but sometimes I need more.

 

I am thrilled you are getting out running errands and such. It must feel amazing! I still cannot drive due to DR; husband still shops and does errands because I am just too spacey! I know what  you mean about exercise; I am in such a rigid state from anxiety and trying to control my body against the boatiness I cannot relax into any type of exercise. I feel like I am 80 years old!

 

yes i know, i feel like i am 90 years old. the way i was all hunched over and so tight and rigid. i am not hunched over lately and able to walk a little better and able to manuver around a little better. i had and still have severe squeezing neuropathy around both knee's to where i feel like they are lassoed. and i'm always falling over or falling foward and losing my balance and with the undulating (floaty boat) the balance symptom is even worse. but lately, i am standing up straight and walking a little better. so little by little -- getting there. i don't know how i've been able to drive this whole time. even in the very beginning in acute when i had to drive which was rare, i still would do it and i have no idea who was driving?

 

this is a pretty unbelievable journey huh? one for the books and Akashic Records. oh is this going in the Akashic Records!!

[[...]]

Thanks for the encouragement Pretty. You are right, I need to be true to myself and still be sensitive when possible to others. I do get support on a wonderful small private FB group but sometimes I need more.

 

 

Hopeful, I echo Pretty's thoughts and as I also stated on the other thread.  It's just plain wrong that any of us should ever feel the need to feel hesitant about posting here, or even staying away entirely.  I may not be protracted in the true sense of the word, but considering the length of time I've been inflicted with this wretched symptom, I do absolutely consider myself a protracted case, and I identify with and relate much more to all of us longtermers (as I prefer to call it).  Of course we try to be sensitive to others when possible, however it works both ways.  This sx is no joke, it's very cruel and debilitating and relentless, it can bring the strongest of people to their knees!  Big hugs to you. 

 

I do think a Floaty Boat support group in the protracted board would be a great idea.  I'd volunteer to spearhead it if I weren't still struggling so much myself.  Just throwing it out there.  Perhaps someone else reading this might be willing/able to get it off the ground?

 

Pretty, I just *love* hearing good news about you,  my dear friend.  My Gd, if ever there were a warrior and a true survivor, it's you, Girl.  Onward and upward, onward and upward!    Oh, and I googled Akashic Records, lol, will have to look into that further! 

 

Mama, I had very extensive testing done and passed with flying colors, as did most other people that I've read about here.  Maybe for your peace of mind, you might want to consider going?

[[Ho...]]

Thanks for the encouragement guys; maybe I will hang out with you all a bit more. Lord knows, we need all the support we can get.

 

Pushing through day 689 Benzo free.... Wow! We are warriors!!!

[[La...]]

Hi All,

There WAS a floaty boat thread in the Protracted section, so if anyone wants to pick up on that conversation, it's here:

 

http://www.benzobuddies.org/forum/index.php?topic=117489.msg1652708#msg1652708

 

I had a 6 out of 10 on my dizziness scale yesterday, which is like heaven for me.....but it didn't last into today. It's a 9 again, and I'm feeling despair. It's pretty tough to get through these 9s so I appreciate the connection with others out there in the floaty boat ocean.

[[Lo...]]

I'm coming up on 18 months off with the disequilibrium.  I have terrible sinus pressure/pain behind my nose and ear pain.  I wonder if all the sinus pain has anything to do with the constant feeling of movement.  When I lie down at night to go to sleep, I will really rock for a few minutes, so I wondering if there is some benign positional vertigo going on with the ear crystals being out of wack. It doesn't bother me as much as long as I keep moving, just when I sit down or lie down, or put my head back. 

 

I can't remember if any of you have had any testing done.

 

Hi Mama! Glad you found this thread...sorry you're going through this evil symptom. Its my worst symptom. I have an ENT doctor. I went through testing. The flushed water in my ears. My right ear was not responsive. Another test looked at my eyes. They were all over the place. The inner is highly disturbed. I'm also dealing with a lot of sinus congestion which doesn't help. ENT also believes I have excess fluid in my inner ear.

 

He said benzos hit the ears very hard. He hates benzos.

 

I'm on Zyrtec and use a Netti pot 2x a day.

 

Next week he might do the epley manuever to see if the crystals are out of whack.

 

If you're concerned get things checked out. I also do vestibular exercises.

 

I'm also down for a thread in the support group section for floaty boat folks.

[[La...]]

Wow, LM, there were actually some results on your tests? Many of us had "normal" results, despite the symptoms. I'm so glad you have an understanding and knowledgable doctor. Great to hear. Any changes noted with the exercises, medication and netti pot?

[[Ho...]]

I went to an ENT and had vestibule therapy; it did not help at all, in fact I screamed when they tipped me backward. The doctor lolled at me and basically said "the drugs do all kinds of crazy things to us." I am just putting my trust in time at this point in time.

[[Lo...]]

Wow, LM, there were actually some results on your tests? Many of us had "normal" results, despite the symptoms. I'm so glad you have an understanding and knowledgable doctor. Great to hear. Any changes noted with the exercises, medication and netti pot?

 

I was shocked too, that's also the side (the right) that has all the pressure.

.I'm less congested, a lot of drainage.

 

I get upset at times because my balance is still off but I'm not going to stop the vestibular exercises, Thai chi, etc. However I can help my body reset itself I will do it.

 

I had vertigo 11.5 years ago. When they tipped me backwards I felt horrible! But day after day it went from worse to bad to better.

 

My doc said benzos are evil and in the end it does take time...a lot....but he told me don't give up and keep doing the exercises. I can tell when I slacked off from doing them.

[[La...]]

Great to hear some positive news, LovingMother! Keep it up! I did vestibular exercises for a long time but had no change at all. In fact, I was doing them when I came off Prozac, and my dizziness worsened. That HAD to be the drug withdrawal.

[[Lo...]]

Great to hear some positive news, LovingMother! Keep it up! I did vestibular exercises for a long time but had no change at all. In fact, I was doing them when I came off Prozac, and my dizziness worsened. That HAD to be the drug withdrawal.

 

Yep it was the prozac. These meds are the pits!!!! 

[[pr...]]

Pretty, I just *love* hearing good news about you,  my dear friend.  My Gd, if ever there were a warrior and a true survivor, it's you, Girl.  Onward and upward, onward and upward!    Oh, and I googled Akashic Records, lol, will have to look into that further! 

 

thanks abcd! i don't think much of myself sometimes but i do think i am a pretty fantastic warrior for hanging in there and standing by myself this whole time. there were times when i said to my mother "i absolutely understand why those 3 women took their lives. i'm glad i held out and didn't do that. something higher is working with me. yeah, the Akashic Records is a cool thing to read about.

 

 

Pushing through day 689 Benzo free.... Wow! We are warriors!!!

 

i count my days too. i have 1042 days since c/t and 990 since last rescue benzo dose.

 

[[La...]]

Hi All,

I've just started a Support Group for floaty boaters, so please drop in!

Lapis

[[La...]]

The Support Group for dizzy, floaty boaters is here:

 

http://www.benzobuddies.org/forum/index.php?topic=128947.0

 

[Guest [...]]

LovingMother,I remember you mentioning on one of these topics that one of your symptoms was diaphram spasms.What did they feel like?Thanks!

[[Lo...]]

LovingMother,I remember you mentioning on one of these topics that one of your symptoms was diaphram spasms.What did they feel like?Thanks!

 

Oooooooh those things! Literally felt like my diaphragm was twitching. Sometimes it created gaps in air and then at one point it felt very tight. My kinesiologist said it was spastic. He did something to that area and it really helped.

[[Lo...]]

Yes peeps, please come on over to the floaty boat support group thread

 

http://www.benzobuddies.org/forum/index.php?topic=128947.0

[[ma...]]

I'm coming up on 18 months off with the disequilibrium.  I have terrible sinus pressure/pain behind my nose and ear pain.  I wonder if all the sinus pain has anything to do with the constant feeling of movement.  When I lie down at night to go to sleep, I will really rock for a few minutes, so I wondering if there is some benign positional vertigo going on with the ear crystals being out of wack. It doesn't bother me as much as long as I keep moving, just when I sit down or lie down, or put my head back. 

 

I can't remember if any of you have had any testing done.

 

Hi Mama! Glad you found this thread...sorry you're going through this evil symptom. Its my worst symptom. I have an ENT doctor. I went through testing. The flushed water in my ears. My right ear was not responsive. Another test looked at my eyes. They were all over the place. The inner is highly disturbed. I'm also dealing with a lot of sinus congestion which doesn't help. ENT also believes I have excess fluid in my inner ear.

 

He said benzos hit the ears very hard. He hates benzos.

 

I'm on Zyrtec and use a Netti pot 2x a day.

 

Next week he might do the epley manuever to see if the crystals are out of whack.

 

If you're concerned get things checked out. I also do vestibular exercises.

 

I'm also down for a thread in the support group section for floaty boat folks.

 

Lovingmother,

 

I have put off the test after hearing some on here say they are painful.  I don't even know if I have the strength to go through them, however, I'm willing to do the epley maneuver.  I understand that physical therapist can do that.  I think I will have to go to pt for my back and I thought that might be a good time to have it done.

 

My sinuses are so bad and I feel like my head is going to explode.  Burning every day, and it gets worse after I eat.  Do you find the Netti pot and Zyrtec help any?  I use saline rinses and I don't see that it helps.  I have tried different 24 hr antihistamines, but have not been consistent with them.  Since my sinuses got so bad the balance is off the charts.

 

I have an appointment with an ENT that specializes in balance disorders in a few weeks.

[[La...]]

Hi Mama2,

I'm glad you're going to see an ENT. It makes good sense to have things checked out properly since there can be so many causes of dizziness. Sometimes it's a process of elimination to get to the reason for the dizziness, and this seems to be the case with benzo dizziness. Until there's a definitive test for it, it seems like we have to do things this way.

 

I hope it goes well with the ENT! In the meantime, take good care, okay?

[[Qu...]]

I get this very rarely - maybe once a month. I can't imagine having it daily - my heart goes out to all of you who suffer with this!