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

[[La...]]

Hi Shook,

Yes, I definitely had some derealization/depersonalization for awhile. It was rather unnerving until I looked it up and figured out what was going on. I wasn't on BB during my taper or immediately afterwards, so I just muddled along. I read the Ashton Manual, but I didn't spend a lot of time reading about symptoms because I thought I'd get them if I read about them. So, when that weird out-of-body, dream-like stuff started to happen, I found it strange. Once I read a bit about it, I calmed down a bit, but it was totally wacky. Of course, it went away, and it hasn't happened in ages.

 

I'm sorry to hear about your visual stuff, Shook. If you're seeing Fabio in your toast and anything but alphabets in your soup, then I would definitely blame it all on the drugs, Man! Those crazy drugs! Why communists, I wonder? Why not vegetables? Why not alphabets? Why not noodels, for goodness sake?

 

These are questions you can ponder in your free time.

 

[[Yo...]]

Yeah, as bizarre and upsetting as dp/dr are, once you know what they are and stop obsessing over them, they fade.

 

As for seeing little Stalin-shaped noodles in my tomato soup, it's in reference to a quote from the last Indiana Jones movie, which was referencing the paranoia stirred up by senator Joseph McCarthy at the time.

 

Other soup trivia: seeing soup in a dream symbolizes abundance, good news and unexpected good events. Seeing soup with a side of laser-printed Fabio toast means you will be visited by a surly repairman with an "electric thingo". 

[[an...]]

Youshook/

 

I'm still in the matrix as far as that goes. Every day feels like an acid trip, especially when I leave the house. The acid trip plus the dizziness is super hard to deal with.

[[La...]]

Yeah, as bizarre and upsetting as dp/dr are, once you know what they are and stop obsessing over them, they fade.

 

As for seeing little Stalin-shaped noodles in my tomato soup, it's in reference to a quote from the last Indiana Jones movie, which was referencing the paranoia stirred up by senator Joseph McCarthy at the time.

 

Other soup trivia: seeing soup in a dream symbolizes abundance, good news and unexpected good events. Seeing soup with a side of laser-printed Fabio toast means you will be visited by a surly repairman with an "electric thingo". 

 

But I never dreamed of toast! I had the surly guy here without the premonition. What does it mean? And in your case, do you think you'll you be visited by a surly repairman with a thingo? Electric or otherwise? Why don't these repairmen ever bring diamond thingos instead? These are more questions you can ponder in your free time.

 

[[La...]]

Hey Dizzy Buddies,

I've been reviewing some of the literature I have stored, and I wanted to share this bit of info from an ENT textbook. It's in the section on vestibular rehabilitation. Note: The use of the word "incomplete" means exactly that, i.e. not yet complete. It doesn't mean it won't happen. It refers to the process of vestibular compensation, the importance of continuing to move and the fact that continued use of vestibular suppressants (e.g. benzos, antihistamines, anticholinergics) can be problematic.

 

Reference:

Flint: Cummings Otolaryngology: Head & Neck Surgery, 5th ed.

 

Key Points

• Vestibular compensation is the normal physiologic response of a healthy central nervous system to vestibular pathology.

• In many patients with chronic imbalance and dizziness, the symptom complex is a result of incomplete compensation after a vestibular insult.

• The compensation process hinges on the neurologic phenomenon of adaptive plasticity, with reorganization of perceptual and motor output responses to altered sensory inputs.

• Patients who avoid the inciting movements that provoke sensorimotor conflicts or continually use vestibular suppressant medications are at particular risk for delayed or incomplete compensation.

• Confounding central neurologic disease or an unstable peripheral lesion also can lead to ongoing symptoms.

[[Si...]]

Hi lapis.

I went to many doctors...idi many test ( EMG, MRI, EKG,blood,...) all of them came back negative and normal. When i started to yake klonopin my balance issue started and after withdrawal it has gotten worse.beside balance issue, i have had right hand weakness, body shake and jerk specially in my fingers, muscle twitching, fatigue...

All of them have started to get better but my balance problem NOWAY...it is mild and slight but it annoys.

We have many short term users that are suffering from variety of symptoms..i think these druge dont care how old are you, or who you are or how long you have taken...one pill is one pill...if the body addicted it will annoys you.

[[Yo...]]

Youshook/

 

I'm still in the matrix as far as that goes. Every day feels like an acid trip, especially when I leave the house. The acid trip plus the dizziness is super hard to deal with.

 

It kicked up for me too when I went out... There was "visual vertigo" at play too in busy environments like supermarkets. The bad reaction to the AD left me shell-shocked and in constant flight/flight mode, living second-to-second.

 

I made it sound easy when I said it just "fades", but it took some time and effort to lose the feeling. I was in it (or out of it!) for about a year... The "effort" was busying myself and living as normally as possible despite wanting to stay holed up in my apartment with the curtains shut. Being a shut-in is a good way to becoming a complete agoraphobe.

 

 

 

Lapis, so much food for thought!

 

"Adaptive plasticity" and retraining your brain/vestibular rehab sounds great for ppl experiencing standing dizziness, but what about the Curious Case of Benjamin Shook, who only feels the boatiness when he's lying still, and whose balance is really unaffected?

 

Just benzo-induced wackiness I guess, to confound the specialists.

 

Wow, I'm talking seriously about dizziness on the dizzy thread. Will wonders ever cease... 

[[La...]]

Hi Silent singer,

It's good news that all those tests you did came back normal. Did you do vestibular testing as well? Obviously, there's no conclusive test for benzo withdrawal, but the process of eliminating other possible reasons for symptoms is important. Are you quite confident that yours is a case of benzo withdrawal? If so, then, as you probably know, it's a bit of a waiting game. I do think you should continue to stay active and do whatever you can to stay healthy and comfortable, but none of us has figured out any way to get rid of the symptoms quickly. We do our best to cope.

 

I do hope that with your limited use of clonazepam, you might not have too long to wait before it's all gone. You're right, though, that it's not linear, and it doesn't always correlate with how much or how long you've taken the medication. Try to stay positive, if you can. We're all hanging out together to make it less lonely, so please jump in any time. 

[[La...]]

Hey Mr. Shook,

The "adaptive plasticity" line tells us that the brain DOES get better, that it adapts and changes, that it's not stuck like this. That's why I posted it. I want a magic bullet too, but there ain't one. Well, not yet.

 

In the meantime, Mr. Benjamin Shook, maybe you can imagine your lying-down-dizziness to be a bit like a gentle, rocking cradle that rocks you to sleep each night. Yes? No? Could it work? It could be a visualization exercise or something. I used to fall asleep in the bow of our sailboat when I was quite young, because I loved that gentle rocking. Parents rock their kids to sleep. Maybe it can lose some of the unpleasantness  -- at least, temporarily -- if it's re-imagined. 

 

Just throwing it out there as an idea. You can throw it out completely if it doesn't make any sense. I keep trying to make peace and find new ways to deal with my rockin' and rollin', but on days like today -- yes, it's another 8 -- it's really, REALLY hard. But the day is almost over, and I'm hoping for a 7 or less tomorrow. We just have to get through another night, because it could all change tomorrow.

 

 

[[so...]]

Hi Silent Singer,

 

I know what you mean about struggling this hard with such short term use.  I took Ativan sporadically low dosage for two months.  Days would go by without taking it at all.  I am 32 months in this and it does get better, but I still struggle with how little I took and how I'm no different than anyone else in my suffering.

 

I like how you've accepted this.  For the most part, I have too.  Once our receptors get downregulated, that's it.  We are in IT.  We go through the same slow recovery as everyone else.  It does truly happen...the gradual upregulation.  It's slow, but everything unfolds as it should.  Our brains are rebuilding methodically, as the brand new receptors come back online in patches, filling in to form a lush green lawn of them that work perfectly.

 

That's the stuff I think about.  How wonderful it is to be completely recycled and remodeled at my age of 63.  A second chance, a rebirth.  Feeling better my last years on earth than I ever did before.

 

The dizziness goes away.  It did for me.  I have a couple of crummy things left, but they will leave too, just like your dizziness will.  They are all symptoms, none more powerful than another.  Dizziness is a challenging one for sure.  But they all are.  You will be okay.  We will all be fine.

 

Sofa

[[so...]]

Lapis,

 

You are right again.  It could all be gone tomorrow.  My symptoms are dropping down quickly now.  This process picks up steam at a certain point and just keeps plowing.  I've still got stuff.  It's okay.  When you see things generally start to improve overall, it's enough...for now.

 

Love you, Sofa

[[Si...]]

Hi sofa kingdone

Indeed it is really really frustrating and annoying.

Do you have balanve privlem or dizziness?

Moreover, can you tell me what was your symptoms?

[[La...]]

Lapis,

 

You are right again.  It could all be gone tomorrow.  My symptoms are dropping down quickly now.  This process picks up steam at a certain point and just keeps plowing.  I've still got stuff.  It's okay.  When you see things generally start to improve overall, it's enough...for now.

 

Love you, Sofa

 

I'm SO glad to hear that your symptoms are loosening their grip on you! Fantastic! Not much longer now.....

 

[[so...]]

Silentsinger,

 

I don't have the dizzies anymore.  They were awful and very debilitating.  My "drunken sailor" symptom started to improve after about 15 months.  It started to become more intermittent than daily.  I didn't really notice a decrease in intensity, just less frequency.  When I had it, I'd have to lay down in bed until it passed.

 

I still have early cortisol mornings (4am) with feelings of dread and head pulsing and heart pounding.  The head pulsing stays with me all day.  I still have geographic tongue that I got in January of this year.  My RLS is intermittent now, the electric legs are all but gone.  I may get a few blips in the morning.

 

Thanks for asking.

 

Sofa

[[La...]]

Hey Dizzy Buds,

Howzit going, Everyone? Staying upright? Staying positive?

 

I've been checking out the latest studies on PubMed in the world of vestibular studies, and I found a few that might be of interest to everyone here.

 

1. "Evalution of the effectiveness of multimodal approach to the management of cervical vertigo"

 

https://www.ncbi.nlm.nih.gov/pubmed/28713084

 

2.  "Effectiveness of Otolith Repositioning Maneuvers and Vestibular Rehabilitation exercises in elderly people with Benign Paroxysmal Positional Vertigo: a systematic review."

 

https://www.ncbi.nlm.nih.gov/pubmed/28716503

 

3.  "Benign Paroxysmal Positional Vertigo: Management and Its Impact on Falls"

 

https://www.ncbi.nlm.nih.gov/pubmed/28718303

 

4.  "Balance training improves memory and spatial cognition in healthy adults"

 

https://www.ncbi.nlm.nih.gov/pubmed/28720898

 

5.  "Tailored Care for Functional Vertigo/Dizziness - An Integrative Group Psychotherapy Approach"

 

https://www.ncbi.nlm.nih.gov/pubmed/28722100

 

6.  "Management of Benign Paroxysmal Positional Vertigo: A Comparative Study between Epleys Manouvre and Betahistine"

 

https://www.ncbi.nlm.nih.gov/pubmed/28723599 

 

7.  "Three-dimensional head-mounted gaming task procedure maximizes effects of vestibular rehabilitation in unilateral vestibular hypofunction: a randomized controlled pilot trial"

 

https://www.ncbi.nlm.nih.gov/pubmed/28723718 

 

P.S. There will NOT be a test on this later! 

 

 

[[Yo...]]

Checking in to say hi and see how y'all are doing aboard the battleship! I hope there aren't any red pegs in the boat today! 

 

 

http://files.onset.freedom.com/ocregister/blogs/Crime_blog_photos/battleship.jpg

[[La...]]

Hey,  you sunk my battleship!

 

....or something like that. Wasn't that in the commercial? Omigosh, it's been a loooong time.

 

I've got an 8 today again, and I'm pretty wired, Shook. How about you? Hanging in there?

 

I really miss board games. Monopoly anyone? Operation? Life? Clue? Ah, so many good ones.

 

 

[Guest [...]]

Hi you guys!I love the Battleship game Shook!I remember that commercial but never played that game.So if you talk about red pegs,it's over my head!

 

Remember Mystery Date?I thought the nerd guy was kind of cute....

 

Still battle shipping the off balance stuff like you all!Last two trips to the store were off balance and anxiety filled fun.It sures goes in waves though.Things come on strong and scare me,then taper off and fade,and I get small glimpses of normal for a little while.

 

Do any of you guys have the back of your head hurt off and on,and sometimes your neck with it?That comes and goes too with the off balance feeling.

 

I'm sorry about the #8 Lapis!  

[[La...]]

Hi 2200,

I promise not to talk about red pegs, because I really don't remember that game at all! Just the commercial. How sad!

 

I know you were having some really good days not too long ago, so did it change again? I think you said you were getting lots of 5s, which sounded wonderful! If there was a change for you, I'm going to blame it on the frogs and the moles in your midst. It HAS to be them! Meanies!

 

But seriously, 2200, I'm really bummed to hear that your dizziness has ramped up a bit now. We seem to be the Dizzy Queens around here, yet I don't feel royal or special, and I don't want to wear that crown! Darn it! As for the pain your talking about, I mostly get neck and shoulder pain, but I have to say that I believe mine is all caused by bad posture. I keep trying to do chin tucks (remember those?) and neck stretches, and I try to keep my shoulders back and down. They keep slumping forward. Baaaaad!

 

By the way, I found out that the cute little puppy is a Welsh Terrier, so it's pretty much all black now, but I think it'll be more brown as it gets a bit older. Soooo cute! I haven't jumped out the window to steal it yet. It's probably best if I just leave it with its loving owner at this point. They make a lovely couple!

[Guest [...]]

Lapis,that Welsh terrier sounds adorable!I love puppies!I think it is so admirable that you held back from pup(kid) napping him!With all that cuteness,it must be so hard to resist.

 

I think as far as balance stuff,I am all over the map lately.It's making me crazy!I jump to an 8,a little later in the day a 5,and sometimes a 3.It's so weird!I think it is scaring me more now because it is doing that back and forth stuff all day.I think I am doing a moderate day of off balance to get hit later in the day with a bad wave of it.I think it must be trying to leave,as the other symptoms are doing the same and all bad waves are shorter.It is all so frustrating. :'(

 

I have been watching several of Don Killian's videos on merryjoyousfree.He seems to know quite a bit,and he answers people's questions which I like.Do you watch any of his videos?

 

Still quite a few baby frogs hopping around our porch area.They are very slow to leave and get on with their little frog lives in some nice, cool water frog paradise somewhere in someone elses yard.I wish they would move on,they are hard to see in the grass,and we are worried we are going to step on them!

 

One good thing,our dog leaves them alone.She acts a little scared of them.She's normally good watch dog,but does not want to take on the prairie baby frog infestation.

 

 

 

 

[[Be...]]

I liked Battleship, Monopoly, Operation, Mystery Date, and Trivial Pursuit and Balderdash when older, Lite Brite--not really a game, just making lit up pics, lots of card games, Rummy, jacks. 

[[He...]]

I NEED HELP AND GUIDANCE.....

 

I don't know what to do.....I panic....then I get dizzy ....then I push through.....then I get vertigo.....then I panic....

 

How do I do this day after day after day........

 

Thoughts please on how to get through this....

[Guest [...]]

I liked Battleship, Monopoly, Operation, Mystery Date, and Trivial Pursuit and Balderdash when older, Lite Brite--not really a game, just making lit up pics, lots of card games, Rummy, jacks.

 

 

Hi Becks!How are you doing?

 

We had such great games in the old days! :)I was thinking of Mouse Trap and Twister.My sisters played those games a lot.I don't think many of us on the dizzy thread could play Twister now!Would make for a great,funny video that's for sure!Then off to the ER!

[Guest [...]]

I NEED HELP AND GUIDANCE.....

 

I don't know what to do.....I panic....then I get dizzy ....then I push through.....then I get vertigo.....then I panic....

 

How do I do this day after day after day........

 

Thoughts please on how to get through this....

 

 

 

Hi HealingSeeker!I am so sorry you are having it so rough!Really though,you have just described my day and most of the gang on here.It is very hard and challenging most days.I will tell you that is does gradually improve.As time goes by the intensity starts to lighten at different times as you get further a long.You will get better days and some not so good ones,but all you can do is hang tough,and remember you will heal from this.One day closer each day off the meds!

 

I get a lot of panic and anxiety from the dizziness too.I wish I had some good advice to give you,but all I can tell you is to sit and rest when it's really bad,and get up and move around and keep as busy as you can when feeling more like it.Keeping busy even if it is something small like folding some laundry,or coloring in one those adult color books,etc.will help to pass the time and keep your mind from being too over whelmed with this stuff.Sometimes you get lost in a distraction,and it helps a lot.

 

 

 

Dizziness is a major stressor to the body and mind,just trying to keep from falling,and the weird head stuff that goes with it.It easily can trigger panic,worrying about falling,and the health fears that pop in your head that it must be something else and not withdrawal.It's all part of the healing process,and if you read many of the posts on BB,you will notice it is very common.Hopefully that will ease your mind some,that this is the normal pattern with the dizziness.

[[He...]]

2200. Thank you for being so kind...

 

I seem to know all of this by heart but each day I'm so darn anxious and dizzy. ( must be a loop) I just am in despair over how I'll survive it.

 

Thank you for responding.

 

I'm afraid to do anything