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

I wouldn't trust a vestibular implant at all.  If something goes wrong with it then the patient is screwed.

I wouldn’t trust it either Becks!  Nope nope nope.

I had a break from my boatiness finally. It wasn’t completely gone all day but mostly mild in the background unless I went for a walk. It would rev up for about an hour or so then go back to barely there. I was in heaven lol

This past Saturday I was hit with a sudden episode of spinning and every since then my boatiness is back to almost constant again. I’m hopeful because if it went almost completely away then it can do it again. I just hope this time it won’t stay as long. 

I notice this sudden episodes happen every time I make progress when I go walking. I wonder why?

I have that boatiness constantly. No vertigo. I’m 3 months off CT. I’ve had rocking and swaying for the last 8 weeks. Also triggered while eating and fragrances.

 

The Epley maneuver helped. It’s supposed to be for BPPV, so I doubted that it would work. But it made a difference instantly. Apparently I have a some level of BPPV.

 

Don’t overdo it tho. I did the maneuver once and it helped, one more time and help more, 3rd time fine. I could still feel a little balance problems. Did it a 4th time and it made it worse. A fifth time helped but I wish I woulda quit while I was ahead. I did the maneuvers 15 minutes apart

Hi WWW,

Did you see or speak to a doctor or health professional about doing that move before you did it? I was just reading this webpage from Johns Hopkins about the Home Epley Maneuver, and it refers quite a few times to a "healthcare provider" with whom you might consult before doing this exercise.

 

Here's a quote from the webpage:

 

"If you still have symptoms after doing the home Epley maneuver, call your healthcare provider. You may not be doing the maneuver the right way. Or you may have another problem that’s causing your symptoms of vertigo. The home Epley maneuver only works to treat vertigo from BPPV. But many other conditions can cause vertigo."

 

https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/home-epley-maneuver 

@[La...]

 

Yes I have been to the ENT, neurologist, nephrologist, physicians, psychiatrists, dozens and dozens of ER doctors, urgent cares. Every kind of blood test, imaging, to include brain mri. They all said there’s not wrong with me. I also get the tinnitus but only about 15 times a day for about 10 seconds. I’m only 3.5 months in. The first 6 weeks I had many horrible symptoms but not loss of balance. Then suddenly severe boatiness. Hasn’t gotten much better or worse. The maneuver helps me for a few hours. I didn’t think it could help before I tried it. I see others who it doesn’t affect either.

 

I’ve read that it’s safe to do at home. It’s not an invasive surgery. But if you do it too many times you could cause more crystals in the ear. Some sources say only do it once a day. Some sources say 3-5 maneuvers, 3 times a day, or until dizziness is gone for 24-48 hours.

 

Have your symptoms progressed at all?? Do you have moments during the day that you aren’t dizzy??

Hello friends.  I am currently about 18 months benzo free.  The last 8 months have been relatively symptom free until about a month ago.  Started getting pretty bad dizziness, which i have not felt prior.  Could this new symptom be related to protracted withdrawal?

@Lapis2

 

Yes I have been to the ENT, neurologist, nephrologist, physicians, psychiatrists, dozens and dozens of ER doctors, urgent cares. Every kind of blood test, imaging, to include brain mri. They all said there’s not wrong with me. I also get the tinnitus but only about 15 times a day for about 10 seconds. I’m only 3.5 months in. The first 6 weeks I had many horrible symptoms but not loss of balance. Then suddenly severe boatiness. Hasn’t gotten much better or worse. The maneuver helps me for a few hours. I didn’t think it could help before I tried it. I see others who it doesn’t affect either.

 

I’ve read that it’s safe to do at home. It’s not an invasive surgery. But if you do it too many times you could cause more crystals in the ear. Some sources say only do it once a day. Some sources say 3-5 maneuvers, 3 times a day, or until dizziness is gone for 24-48 hours.

 

Have your symptoms progressed at all?? Do you have moments during the day that you aren’t dizzy??

 

Hi WWW,

Well, it sounds like you've definitely had things checked out. Many people who have come through this group have done lots of testing and investigating and have had things come back "normal" or "negative". To me, it means that the testing that's currently available isn't able to detect certain kinds of dizziness, since so many of us are experiencing the same symptoms. There are tons and tons of posts on BB about floaty-boaty dizziness while taking benzos, during the taper period and during post-withdrawal.

 

I tend to have a three-day pattern, with two very dizzy days in a row (9 and 8 out of 10 on my scale, respectively), followed by one better day (a 7 or a 6 out of 10). I chart it so I can see what's what. And that pattern has been going on for quite awhile. So, yes, I get some less-dizzy times. Everyone seems to be different when it comes to this. Some people may have better times of the day, but I really don't know how it is for everyone around here. Maybe others can weigh in with their experiences on that.

 

Keep in mind that the Epley Maneuver isn't really addressing what has happened to your balance, if your balance issues are caused by the medications you took. This isn't a crystal issue. That's BPPV. But in this case, it likely has more to do with the neurotransmitters that are involved in balance and that can be badly affected by certain types of medication, including benzodiazepines. There are many, many medications that affect balance, and again, it's not about crystals in the inner ear. Balance is a highly complicated thing involving your vestibular system, vision and proprioception.

 

 

Hello friends.  I am currently about 18 months benzo free.  The last 8 months have been relatively symptom free until about a month ago.  Started getting pretty bad dizziness, which i have not felt prior.  Could this new symptom be related to protracted withdrawal?

 

Hi Blackjack,

I think it's a bit difficult to answer your question. If you've suddenly become dizzy over the last month, and you've been off 18 months already without being dizzy at all, it may or may not be from the benzos. Have you seen you family doctor about it? Dizziness can be caused by so many different things, some serious and some less so. It might be a good idea to have things checked out, if you haven't already.

Hi Folks!  Been a while since I last posted here.  I’m in a bad way here as of late.

 

I have the dizzy, floaty, boaty issues but it’s so much more than that:

 

It feels like my brain is throbbing. Moving my eyes to the extreme left or right makes it worse. It feels like the ground is coming up to meet me, knocking me around and I have balance issues.  I have extreme raging tinnitus 24/7 which seems to resonate at the same frequency as the inner vibrations / tremors in my legs and throughout my body.  My eyes don’t focus well and artificial light is unbearable.

 

Can anybody else relate to this? If so, I’m sorry…But it can’t just be me, can it?

Hopper 14,

 

Yes! Me too.  I could have written everything you wrote.  You stated it well.  I get this intermittently and had it severely sometimes even before I tapered off.  This week I can barely walk at all or sleep due to the buzzing and "fun house" sensations when walking. The shower terrified me this morning and it was like being in a swaying box that was lifted in the air by a crane.  So sorry you are dealing with it too. I have no idea what to do about it except wait it out.  For me, it tends to eventually go away but then infuriatingly and mysteriously starts up again without any apparent reason.  I really hate it.

 

Helen

 

and yes to the tinnitus too

Thank you for the reply Helen!  I’m sorry you are dealing with this as well! I know exactly what you mean about the shower, so unsettling! Your crane analogy is spot on! From all the research I have done, waiting it out seems like the only option. I do hope we all get some relief soon!

Yes I’m still dealing with this too. Mine also left or nearly left then came back worse. I’m told it’s the brain’s way of going back to fine tune things. One day hopefully soon we’ll be free of it for good then we’ll be able to tell the others that it will go away. As Helen said….with time. Nothing we can do about it except be careful when we’re walking around.

In the meanwhile it sucks! Seems to last the longest of all the symptoms. That tells me our vestibular system was hit hard over and over. Takes time to heal all that damage. 

Sorry you are still dealing with this too LadyDen! Hoping for some relief for us all soon!

Yes I’m still dealing with this too. Mine also left or nearly left then came back worse. I’m told it’s the brain’s way of going back to fine tune things. One day hopefully soon we’ll be free of it for good then we’ll be able to tell the others that it will go away. As Helen said….with time. Nothing we can do about it except be careful when we’re walking around.

In the meanwhile it sucks! Seems to last the longest of all the symptoms. That tells me our vestibular system was hit hard over and over. Takes time to heal all that damage. 

 

Hi Neighbor! 

 

I'm sorry you still get this stuff. I'm glad you said that about the "fine tuning" of the vestibular system.  Mine must really need A LOT of tuning.  Good grief. Sometimes I think my erratic use of Z drugs both nighttime and sometimes daytime for naps (UGH, makes me shake my head now) is the reason my system is so off.  Mine was much better yesterday but started up again this morning.  Hope we all heal ourselves out of this soon. 

 

Helen

Wow I don’t think A bathtub would be big enough to catch all the tears of joy I would shed if I woke up healed from this! Helen you’re right that I hope it’s soon too. Wishing you me and everyone healing.  I’m glad you had a short break from it. I also had a short break today but had a big headache all day. I’m not complaining because any relief is much welcomed.

Hi Dizzy Buddies,

I just wanted to share a review that I recently came across, called "Episodic Spontaneous Dizziness". This type of thing is common with different types of dizziness, and you'll see from the abstract how difficult it can be for doctors to figure out exactly what's going on.

 

https://pubmed.ncbi.nlm.nih.gov/34351111/

 

 

Abstract

 

Purpose of review: Conditions causing recurrent spontaneous episodes of dizziness or vertigo span several medical specialties, making it challenging for clinicians to gain confidence in evaluating and managing the spectrum of episodic vestibular disorders. Patients are often asymptomatic and have normal examinations at the time of evaluation. Thus, diagnosis depends heavily on eliciting key features from the history. Overreliance on symptom quality descriptions commonly leads to misdiagnosis. The goal of this article is to provide the reader with a straightforward approach to the diagnosis and management of conditions that cause episodic spontaneous dizziness.

 

Recent findings: Consensus diagnostic criteria have been established for vestibular migraine, Ménière disease, vestibular paroxysmia, and hemodynamic orthostatic dizziness/vertigo. Vertigo has been recognized as a common symptom in vertebrobasilar ischemia, cardiogenic dizziness, and orthostatic hypotension. Treatment recommendations for vestibular migraine still lack high-quality evidence, but controlled trials are occurring.

 

Summary: The evaluation should start with a detailed description of the episodes from the patient and any observers. Rather than focusing first on whether the symptom quality is most consistent with vertigo, dizziness, lightheadedness, or unsteadiness, the clinician should clarify the timing (episode frequency and duration), possible triggers or circumstances (eg, position changes, upright posture), and accompanying symptoms. History should identify any auditory symptoms, migraine features, posterior circulation ischemic symptoms, vascular risk factors, clues for anxiety, and potentially relevant medications. Carefully selected testing can help secure the diagnosis, but excessive and indiscriminate testing can lead to more confusion. Treatments for these conditions are vastly different, so an accurate diagnosis is critical.

Thank you Lapis. Very interesting. Mine does occur in an episodic fashion. Hard and suddenly without any reason most only.

Thank you Lapis. Very interesting. Mine does occur in an episodic fashion. Hard and suddenly without any reason most only.

 

Yes, it's quite common. The language used in the case of benzo withdrawal is often "waves and windows", but I suppose that "episodic" could also be used.

 

A couple of other interesting points in the summary include the descriptive words for the "symptom quality", and the fact that testing too much can be problematic.

Episodic seems like a good way to label it.  Mine stops for a day or two and then a switch flips and suddenly I can barely ambulate on my own again.  Beginning yesterday, I'm back to needing to hold on to walls or furniture for support as the boatiness is intense.  I even feel it sitting still this time around.  Are we all pretty much in agreement that at least for people on BB, that benzos caused this?  I'm almost 5 months off of everything and getting waves of this mess pretty frequently. 

Mine is constant!  I don’t remember a day when I didn’t have it to some degree. Never had an issue with this until I began to go into acute BWD. 😞

I'm sorry Hopper. I think I also feel some aspect of it every day. Some days it's more intense though and doesn't let up.  I'm in that phase now. Yeah, I never had this mess either until four years ago when I zig zagged and kindled in my attempts to taper.  I had wine on board too and that surely didn't help.  I've had no meds or alcohol now since early June and waiting for the boat to dock at the shore so I can get off.

No doubt it’s benzo or zdrug related ( in my case) for sure. Mine started towards the end of my taper with a sudden severe episode of spinning, brain “shut down” sensation and loss of muscle tone. I couldn’t hold myself up or control any voluntary muscles. This lasted a few seconds. Terrifying is putting it lightly! All I could do was collapse. Every since then I’ve had boatiness and dizziness ( off and on and balance issues including intolerance of standing or sitting up. The “ episodes of sudden severe spinning with loss of muscle control happens out of the blue every few weeks. But the boatiness is nearly constant. In a window it’s barely noticeable. If I go for a walk or do anything like a simple chore ( cooking, sweep the floor, sit up to watch tv, etc) it increases in intensity. It’s so debilitating! Can’t plan anything can’t go anywhere. My boatiness is the same as Helen one day it’s worse than others or in the same day it’s known to intensify late evenings and bedtime. I’ll be so glad when it’s gone for good. Hard to make progress with it because you can’t start back doing anything. The minute I think it’s leaving it circles back.

Thank you for the very informative information. I too am experiencing this feeling along with ringing in my ears and tingling in my hands and feet. I don’t fight it but literally enjoy it. The reason I do this is to say f*** you to this crap drug. What better way to accept this feeling instead of fighting it which is what benzos want us to do. I know it will go away so there is light at the end of the tunnel.

Stay strong and safe.

Old Sal

Edit: Profanity

I also have ringing in my ears varying degrees throughout the day. When I start a wave it increases. That’s how I usually began my wave. I understand why you said what you said Sal. Yes it sucks and makes you want to swear at it!

Can I get an Amen!