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


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My tinnitus has been off the charts lately!  And the nerve pain has increased as well. Almost 3 years off…this is disheartening to say the least.
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Yes it is Hopper but please don’t give up. Hang in there. I know you’re tired. I’m tired too. Hopefully this will be just a bad memory soon . Hugs
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Yes it is Hopper but please don’t give up. Hang in there. I know you’re tired. I’m tired too. Hopefully this will be just a bad memory soon . Hugs

 

Thanks for the reply and the Hugs LadyDen!  Giving up isn’t an option, but like you, I’m tired. Some days just existing can be exhausting.

 

May we all heal sooner than later! 

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Yes indeed they are. I’m so glad for the distractions I have. Whoever invented series deserves a medal. Gives me hours and hours of not focusing on my symptoms. If you can watch tv, check out the seasons of the masked singer. Especially if you like music. Wow that’s a great show!

Feel better today and remember to pamper yourself a bit each day.

Ohhhhh and tell your symptoms to kiss your grits  :laugh: ( I can’t say what I really think)  :thumbsup: but, you know!

Hugs Hopper

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Thanks for the laugh LadyDen!  😊

I have spent a lot of my days watching TV and playing mind numbing games on my iPad. Distractions surely do help. Just wish I was able to be more active. I love to play golf but the sun and the heat just sap my energy. I start seeing spots and the dizzy gets worse. Perhaps I can get more outdoor activity now that fall is here and the temps and humidity will be decreasing.

 

P.S I did see the masked singer this week. =-)

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Hi Dizzy Buddies,

Here's a really interesting abstract about spatial orientation, which includes some basic information about balance and the three different sensory sources that provide info to the brain.

 

Physiology Of Spatial Orientation

 

Rachel K. Meeks  1 , Jackie Anderson, Paul M. Bell

 

In: StatPearls [internet]. Treasure Island (FL): StatPearls Publishing; 2021 Jan.

 

2021 Aug 11.

Affiliations

 

 

    1

    22 Area Clinic Camp Pendleton

 

    PMID: 30085518 Bookshelf ID: NBK518976

 

Free Books & Documents

 

Excerpt

 

Aviation-associated spatial disorientation, as described by Benson, occurs when “the pilot fails to sense correctly the position, motion, or attitude of his aircraft or of himself within the fixed coordinate system provided by the surface of the Earth and the gravitational vertical.” In other words, spatial orientation is the natural ability to maintain body orientation and/or posture in relation to one's environment while at rest and during motion. Humans are naturally designed to maintain orientation while on the ground in a two-dimensional environment. Aviation incorporates a three-dimensional environment and can lead to sensory conflicts, making orientation difficult or even impossible to maintain. Spatial disorientation is a phenomenon that is well known to aviators, but it remains unclearly defined and continues to be one of largest causes of aviation mishaps.

 

Spatial disorientation is achieved through three major sensory sources: visual, vestibular, and proprioceptive. To achieve appropriate orientation the body relies on accurate perception and cognitive integration of all three systems. If visual, vestibular, and proprioceptive stimuli vary in magnitude, direction and frequency the resulting effect can be spatial disorientation.

 

The human eye provides visual and spatial orientation, which is responsible for providing about 80% of the sensory inputs needed to maintain orientation. The vestibular system within the inner ear contributes 15%. Proprioceptive sensory inputs from receptors located in the skin, muscle, tendons, and joints account for 5% of the sensory information used to establish orientation. Complex coordination between these sensory inputs is then translated and interpreted by the brain. Misinterpretation or inaccuracy of these three sources of information can lead to “sensory mismatch,” resulting in a variety of visual or vestibular illusions.

 

https://pubmed.ncbi.nlm.nih.gov/30085518/

 

Seeing how the percentages of sensory inputs (i.e. visual/spatial, vestibular, proprioceptive) break down is a reminder of the complexity of balance and why it's worthwhile to get things checked out.

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As always Lapis gives us the goodies to read. Thanks Lapis! Hugs and hope you’re doing well.

Hopper, I like golf too especially putt putt courses. Before the pandemic they opened a top golf. I can’t wait until I can go see it and play. I’m not good at golf but just lucky quite often lol

My list is so long of the things I miss doing so yeah I feel you. Most of those are so simple like just going to the park to paint. I love parks. Right now I don’t have to be at the park. I’ll settle for just a simple walk outside. Unbelievable that before the first of this month I was walking outside nearly everyday just looking around, enjoying birds or butterflies and getting a little sun. All of a sudden WHAM! I got sacked by a big wave and back in this bed I go. But, this time I seem to be recovering faster. I’m already up walking for a few minutes without my walker. Last week I couldn’t do that very much. Well it’s 10 pm here and I’m starting my night wave. Bedtime! Like clockwork my boatiness increases. Lol

Happy healing to you and Lapis and everyone dealing with this. Hugs

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Thanks for the interesting read Lapis!

 

LadyDen, I know exactly what you mean, nighttime and mornings are just the worst!  Sorry that you are still in this wave!  I hope it passes quickly this time!  I was able to get out and play 9 holes of golf with my son Tuesday afternoon, it was a bit of a struggle but I’m glad I pushed myself to do it. I was dizzy/lightheaded and seeing spots at one point from the bending over to tee up the ball, line up putts etc.  I just have to limit myself sometimes, but I’m trying not to let it win!

 

I have a full day of BBQing planned for tomorrow (today) but it’s almost 3AM and I’ve been awake for the past hour. My sleep cycle seems to come and go. Currently I can get about 3-4 hours continuous. I love those nights where I can get 6-7 hours!  :)

 

Best wishes and healing thoughts to you all!

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Hey Hopper save me some of those ribs! Skip the bbq sauce  :thumbsup:

Wow I haven’t had bbq in so long. Along with many other things. Yesterday I looked up ingredients at various pizza parlors. Papa Johns have all natural ingredients so I tried their pizza. So far I don’t see any I’ll effects from it but I created my own pizza instead of going with the ones on the main menu. Here’s what I ordered

Gluten free thin crust, ground beef, bell peppers, light onions, no oils, no seasoning, light cheese with no pizza sauce. Surprisingly delicious!

I only ate one slice…just in case. I skipped the sauce because I didn’t want to chance the oregano Erving me up. I’m sick enough! Lol so I decided that on my next grocery order I’m going to order the things needed to make my own pizza and I’ll make my own sauce as well.  :thumbsup: I’ve modified tacos as well. Adding my own seasonings instead of using taco seasoning. So far so good. I’m doing this with all the foods I love so I can enjoy them again. I haven’t figured out ice cream yet. Lol

This has taught me soooo much. I have so many delicious benzo friendly recipes. If you’d or anyone would like me to share them then I’d happily do so.  :thumbsup:

Enjoy your bbq day my friend. By the way, where are you located?

I’m from Louisiana but live in SC now.

 

Lapis as Hopper said about not letting this win, I’ve tried to do the same but it’s nearly impossible to do when I can barely walk. I can’t tolerate being upright but for a few minutes. Did you have this problem at some point?

Or maybe you Hopper?

If I didn’t have this symptom of boaty and upright intolerance I’d be about 85% healed. It’s crazy how everyone has what’s called their worst symptoms that hang around so long. No doubt my vestibular system was hit hard!!!

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Hi All,

It really seems to hit everyone differently. To answer your question, LadyDen, I've never spent a day lying down. I can't. Even if it's a 9.5 out of 10 for me, I can't do that. I try to move around a bit and do my exercises (in sitting) and sit at the computer to read. Lying down doesn't decrease my dizziness or make me feel better, so that's why it doesn't make sense for me to do so. My dizziness level seems to change overnight, and I wake up with a certain level of it that stays with me for an entire day. My big question has to do with any changes that take place during the night, whether it's the neurotransmitters or hormones. I've been wondering these things for a long time, but there's no easy way to get these questions answered.

 

Anyway, I guess we each have to figure out what works for us in order to survive and get through the days.

 

 

 

 

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I’ve wondered about that too Lapis. Like science has proven that we heal in our sleep. I’ve been sleeping well the entire taper and afterwards even until now. What is going on in the brain when we’re sleeping? You would think that it would make us heal faster.  ??? Instead it seems I’m no better than those suffering from insomnia night after night. This makes no sense.

I tried to force myself to sit up or walk around to not be in bed but unfortunately I have no choice. I PHYSICALLY can’t tolerate it right now. I’m assured only because I’ve been here before and it improved to the point that I thought the worst was over. I had just started back driving ( just once). I’ve yet to come across any other Ambien users that this happened to of this severity. Literally Ambien acted exactly like a regular benzo in my body. In some ways worse. The best thing I can compare it to is when they showed those poor cows with mad cow disease. You remember how they’d be barely able to stand up then just fall over? That’s how this is for me. If I force standing or sitting up I collapse losing the ability to control my muscles. I start spinning severely suddenly inside my head like someone flipped a switch. Like a seizure or stroke. Terrifying! But this time around I’m making progress back to my normal quicker. Sooooooooooooo debilitating. I can’t stand up to look in a mirror to brush my teeth or comb my hair etc. I can’t even get in a bathtub. Certainly can’t walk around or fix a meal. So like you I’m trying to make sense of this. What is so damaged in my brain?  :tickedoff: I had a thought the other day….what if I think I’m healed after being able to function for awhile then while driving one of those episodes hit me. OMG! But for now I’m not letting that overpower me. Just focusing on getting back to my nice baseline I had before this.

Don’t you wish we had a future mirror that shows us a year from now? We certainly wouldn’t be worried that it’s permanent. Lol

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Lady Den and Lapis,

 

I'm reading with rapt attention to both of your experiences.  Interestingly, I seem to fall somewhere in between you.  Lying flat is no good for me but sitting up without head support is also no good. Mine waxes and wanes now at 5 months off of everything and I can feel completely different in the morning than I did before retiring to bed the night before. I truly feel like my brain undergoes transformations over night.  My balance issues seem somewhat tied to other symptoms.  For instance if I'm having an off balance day, my ears will be ringing louder than usual, my chest might be constricted, my head might hurt and my muscles might be stiff.  It's like a package deal.  I'm perplexed by the whole phenomena but learning from you all.

 

 

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Omg Helen that’s how my symptoms are too! Packaged together. If I get magnet pulling sensation then I ALWAYS get diarrhea with it. When my boatiness increases I ALWAYS get louder ringing ears. Etc etc  This is the strangest most unpredictable thing I’ve ever experienced. Yes transformation is a good word. I wake up I’m like, what in the world did you do while I was asleep. Lol

Ummmmm hello brain, aren’t you supposed to heal yourself while sleeping?

Helen I’m learning too. I guess put everything together from each other then we might get atleast an idea. Lol

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Yep, always a package deal.  I'm comforted to know I'm not the only one. It's too hard to explain to a doctor so I no longer bother.  There is no way I would do a tilt table test like they advise because I am sure this is just a medication related thing and not some inherent problem I have.  Today my balance is al little off but the head pain and pressure are foremost this time. Do you get headaches too?  I feel like the ear/head/dizzy/balance thing is all in the same pot. Not sure why the tight muscles come along for a ride. 
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I’m having the same symptoms as you including the tight muscles. I get headaches as well that are squeezing tension like headaches that occur in the top of my head but mostly in the front of my face surrounding my sinuses. It lasts 24 hours then when I wake the next day it’s poof….gone!

You’re right Helen not to do that stupid tilt test. You already know it’s all effects of benzo use. Time will gradually heal us. Think about it, they do the tilt test to find nothing then what? Give you pills? Nope! These are the very doctors that don’t believe us by the way. Lol

You’re very smart to just accept it and count on it going away.

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Laying down doesn’t work for me either. If I lie on my back it feels as if a I am slowly tumbling backward upside down. It was bad this morning when I was trying to get some sleep after a very restless night.

 

LadyDen,  I didn’t go full on with the BBQ as planned today, but I am seasoning a new skillet / grill thingy to keep me moving and distracted today.  I’ll have your “dry” ribs for ya next time.  :)

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Lady Den,  They only do the tilt test super early in the morning and it's over at Duke University Hospital so I'd have to get there, get parked and then go through that.  Ummmm....no. I can't even imagine how much that would set me back in my healing process. It makes me ill just to think consider it. NOT going to happen. Your head symptoms do sound similar to mine.  The whole front of my face and temples feel like someone is pushing hard on them right now.  Thanks for letting me know I'm not alone in this.  Onward to better days....

 

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LadyDen, maybe you can get a folding stool to sit on in the bathroom.  I have one I use to sit on to brush my teeth.  I started using it because of my back pain I had years ago.
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Hi Everyone,

Here's my two-cents' worth regarding the issue of tight muscles: If your brain is telling your body that you're falling or being pushed and pulled (the "magnet" sensation), then your muscles react by tightening up. It makes sense. But muscles aren't meant to be tight all the time. Normally, they work by contracting and relaxing as we move, e.g. in walking. Having constant tension (my physio refers to that as "hypertonic") creates pain and exhaustion. Over time, that hypertonicity can become debilitating.

 

So, that's likely what's going on for many of us. For me, it's severely painful. I'm getting help from some physiotherapists (in the U.S., I believe you call them "physical therapists") to reduce some of that muscular tension and pain, but if the disequilibrium/dizziness is intense -- say, an 8 or 9 out of 10 on my scale -- then it's really hard for the muscles release and to stay released.

 

For me, it's a brutalizing experience. And I can see that everyone here is suffering pretty intensely as well.

 

LadyDen, I think the effects of Z-drugs and benzos are pretty much the same in terms of their effects on the neurotransmitters, so it's not surprising that you're having similar effects from the medication you took. I'm not an expert or anything, but they all work on GABA, and GABA plays a major role in the vestibular system. There are at least 8 neurotransmitters that play a role in the vestibular system (I've posted medical journal articles on this before), so obviously, it's a complex and sensitive system that the medications can disturb -- especially if they were taken over a lengthy period of time.

 

None of these medications are meant to be taken for more than 2 to 4 weeks at a time. Beyond that, there's no research on human beings to explain all of the repercussions. We are the experimental guinea pigs and mice....

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Lapis, I've had similar thoughts about the muscles tensing to protect the body from falling. The muscles in my feet get so tight and my toes curl up like I'm trying to cling to the floor for security.  Your theory does make sense.  Sometimes my muscles are all tensed up even when my balance is ok and at those times I think it's just more withdrawal mess. 
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Lapis I agree with what you’re saying. Your explanation makes sense. Yes I’m aware that Zdrugs are really the same as benzodiazepines. I did some research and all they did was take benzodiazepines then modify them a bit then sold them as sleep meds. Sad! But they act the exact same way in the body on the brain targeting the exact same receptors as you said. When I found this out I was sooooooo angry! The pills love targeting the vestibular system. Pretty much what people took them for is what it damages as well as other things that you didn’t take it for like muscle tension lol ( not funny but you know why I’m laughing) also these SAME drugs were designed for anesthesia purposes. That’s right….for surgical sedation. So they never should’ve been on the public market anyway.  And as Lapis said even given to the public there should have been a 2 week MAX prescription. We were told they’re safe, non-addicting, non-dependent, no long term effects etc and we’re told we can take them daily for months and years. So let’s just say they’re honestly unaware of the long term effects ( most of them ARE fully aware of this) but let’s just say they didn’t. Well, they ARE aware that they’re not to be prescribed for longer than a couple of weeks and know they must be tapered. So giving them out like candy they knew better. Point blank period!

Helen you’re right that all we can do is suffer as their guinea pig. Wait this out as best as we can. Pray we wake one morning with it gone for good. Lapis have been dealing with this a long time. Longer than any of us. I’m saddened by this. I’m not old. Mid 40’s. There’s no way I can be this way the rest of my life. In a bed prison! But as I said, I’m glad I experienced it nearly gone for those 2 months or else I don’t know what I’d do.

Poor Hopper can’t even do a bbq….sad!

Becks I have thought about bathing seat but first things first is I’ve got to be able to stand up or sit up long enough to even use it. Thanks for the suggestion. Hope you’re having a better day.

 

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Hello dizzy folks,

 

I wish I had seen this question a couple of days ago.  I saw an oto-neurologist for a long over due followup appointment.  Nothing came of it -- all he could say is that some dire things were ruled out, and he had no idea why I had this  dizziness.  He did say that he knew of another patient who was doing VRT and got no results, until she stopped drinking a glass of wine every night.  So that might say something about benzos.

 

I found this appointment very discouraging --  here's a specialist in this, who sees many people with these symptoms, and he seemed to have no feeling for how difficult it makes life, how debilitating it is, or how exhausting.  Again, I felt that I was making too much out of it, and was anything really wrong, so I staggered out, exhausted after the subway trip, got home, and went to bed, done in for the day.

 

I just found this about the lateral vestibular nucleus on wikipedia:

the ascending branches send terminals and collaterals to the motor nuclei of the abducens, trochlear and oculomotor nerves via the ascending component of the medial longitudinal fasciculus, and are concerned in coördinating the movements of the eyes with alterations in the position of the head;

 

Head and eye movements are what seems to make my dizziness, etc. worse.  So maybe getting through withdrawal, doing VRT can help.  That's a little hopeful.

 

I do have the same, head and eye movements make me dizzy.. did someone else have the same and when did it pass?

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Lapis, I've had similar thoughts about the muscles tensing to protect the body from falling. The muscles in my feet get so tight and my toes curl up like I'm trying to cling to the floor for security.  Your theory does make sense.  Sometimes my muscles are all tensed up even when my balance is ok and at those times I think it's just more withdrawal mess.

 

Hi Helen,

I appreciate that you shared that particular detail about the muscles in your feet, because for me, that's a major issue. Those muscles have to do an enormous amount of work when we're experiencing intense disequilibrium (e.g. floaty boat sensation), and they're doing it in ways that most people can't even imagine. That is, if we feel like we're on a boat all the time, then our feet and lower legs have to respond to that, and they get tight, painful and exhausted.

 

On days when we're less dizzy/boaty, the muscles may have trouble remembering how to relax and work in a more normal fashion.

 

As an aside, the foot is an extraordinary structure. I just looked up how many bones are in the feet, and here's what I found on the Arthritis.org website:

 

https://www.arthritis.org/health-wellness/about-arthritis/where-it-hurts/anatomy-of-the-foot

 

"Each foot is made up of 26 bones, 30 joints and more than 100 muscles, tendons and ligaments, all of which work together to provide support, balance and mobility."

 

 

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Does anybody else have issues wheel bending over or kneeling down? When ever I do this and stand up straight I see black spots and almost pass out. It was a very close call this morning. Thought for sure I was gonna fall out, faint or whatever.
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