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

[Guest [...]]

Lapis,

 

somehow, while bawling in pain, you manage to compose these wonderful and grammatically correct messages with nary a punctuation error, that flow like ink from a fountain pen. 

 

 

I agree with that Shook!Lapis is amazing!

[[La...]]

Thanks, Lovely People. Nice of you to say.

 

When all else fails, it's good to count on good grammar and punctuation, I always say! (Well, actually, I don't think I've said it before, but I just said it now, and it kind of sounds okay, doncha think?!) 

 

 

[[Ir...]]

Hello everyone. Been a long time since I've been on. I'm back to thinking I've Lyme disease again and not in SSRI withdrawal, considering I've never touched a benzo but have this terrible symptom that many on here seem to have - the rocking/swaying, undulating. Eye floaters, small bright white sprite that goes across my vision sometimes. Hissing in the ears while in a quiet room.

 

Does anyones become worse while sitting on the toilet? or worse in small cubicles? I hardly experience it in morning time, yet most seem to get it worse in the morning with cortisol spikes?

 

If I stare at grass, carpet or patterns, they oscillate or move in a wave like motion - anyone else with this?

[[La...]]

Last week I had no sxs and the wavey boaty symptoms I couldn't feel. Then I started to get sxs and the wavey on a boat feelings came back are now the worse they have ever been. I didn't notice them before while shopping etc but now I'm feel them everywhere. Like being rocked backwards and forwards. I have only 2.25mg of Valium to taper and this new side effect which is the worst by far seems to be getting worse. I'm guessing not much will help but getting off the rest of the benzo and my system adjusting which could take some time. Do people find waves or other sxs correlate with the dizziness , wavey etc ?

 

Hi SJDADL,

First of all, congratulations on getting close to the end of your taper! Good work! You're almost there.

 

The dizzy-while-shopping sensation seems to be quite common around here. The lights, sounds and over-stimulation seem to cause problems when one's nervous system is already working hard to settle down.  I think online shopping can provide a good alternative -- at least, for some things -- or perhaps avoiding the larger stores and heading to smaller or less busy ones.

 

For me, the dizziness is almost always coupled with increased leg shakiness and muscle fatigue/pain, as well as anxiety, fear and frustration. I hope others weigh in here to answer your question from their own perspectives.

 

Hang in there! I wish you well with the rest of your taper. 

[[La...]]

Hello everyone. Been a long time since I've been on. I'm back to thinking I've Lyme disease again and not in SSRI withdrawal, considering I've never touched a benzo but have this terrible symptom that many on here seem to have - the rocking/swaying, undulating. Eye floaters, small bright white sprite that goes across my vision sometimes. Hissing in the ears while in a quiet room.

 

Does anyones become worse while sitting on the toilet? or worse in small cubicles? I hardly experience it in morning time, yet most seem to get it worse in the morning with cortisol spikes?

 

If I stare at grass, carpet or patterns, they oscillate or move in a wave like motion - anyone else with this?

 

Hi IrishMonkey,

Welcome back! I'm not sure if you saw this link that I posted twice in the last couple of weeks, but it's about Mal de Debarquement Syndrome. It has strikingly similar symptoms to what we're experiencing, so I'm going to post it here again for you to peruse. This is the symptom page, and while I'm not suggesting you have MdDS, I think the list of symptoms -- both primary and secondary -- is very handy to look at to see which symptoms go together. Visual issues are very common.

 

http://mdds.nyc/mdds-symptoms/ 

[[...]]

Thanks, Lovely People. Nice of you to say.

 

When all else fails, it's good to count on good grammar and punctuation, I always say! (Well, actually, I don't think I've said it before, but I just said it now, and it kind of sounds okay, doncha think?!) 

 

    Funny, amazing, writes- English-good dame you! 

 

I did check out those MdDS links, Lap (Shook probably would've written it out in full cos he can speak French  ).  Quick thoughts.  A damn pity their funding was halted, such a non-invasive treatment with tentatively optimistic results ... nothing in it for Big Pharma.    You may have already read this but I'll post anyway ...

 

http://journal.frontiersin.org/article/10.3389/fneur.2017.00175/full?&utm_source=Email_to_authors_&utm_medium=Email&utm_content=T1_11.5e1_author&utm_campaign=Email_publication&field=&journalName=Frontiers_in_Neurology&id=262852

 

And this, their web app, anyone try it?

 

http://mdds.nyc/app/

 

None of this really applies to me due to the nature of my "special"  rocky boat but I'd say why not try and contact them, Lapsy?  Tell them your story and see if they have any thoughts to share.  Pity this treatment isn't available in your area (or is it?), something this benign would be worth a shot.

 

What were your thoughts?

[[La...]]

Hi abcd,

Thanks so much for sharing that article! I'll have a look. I haven't seen it before, so I really appreciate your detective work on that one.

 

When I first learned of this doctor's work, I contacted some clinics in my area to see if they treated MdDS. It seemed that they had limited treatment options beyond what I'd already tried with vestibular rehabilitation. I think that I'd want to see the expert (i.e. the NYC doc) if I were interested in trying this particular treatment, but I'm not. I will read through the article you've shared and see what the findings were.

[[Yo...]]

Funny, amazing, writes- English-good dame you!

 

abcd's writing skills need a little work, but she speaks from the heart. 

 

As far as "Mal de Debarquement Syndrome" goes (said with snooty Parisian accent and upturned nose), I agree with abcd that it probably wouldn't help us, but it might be worth a shot for those of you experiencing "standing boatiness". But I wouldn't pin my hopes on it as a cure. No, I don't enjoy popping people's balloons, I just know what it's like to go down rabbit holes and come back empty handed.

 

 

[[Je...]]

Hi Jenn13,

Yes, the boatiness goes away! It's another benzodiazepine withdrawal symptom, and like the rest, it should go away. We've had people drop in here on their journeys, and then at some point, they're gone. If you read the Success Stories, you'll see that lots of people have terrible withdrawals, and then.....eventually....it ends. Please stay hopeful! You're welcome to join us here if you need some company and support.

 

One thing to keep in mind is that those who are well tend not to stick around. They're off living their lives. Of course, that's a great thing! But it means that we don't necessarily hear from the post-dizziness folks too much.

 

Take care and keep the faith!

 

Thanks so much! It is crazy how the boaty dizzy weak leg feeling comes and just won't leave me yet. I cant wait. I feel like when it does I can handle the other things. I am just so worn out. How long have you been suffering with this symptom? Is there anything to do for it? I cant even ride in a car to go to a doctor even if I wanted lol.

 

Hi Jenn13,

Some of our dizzy buds find that their dizziness is less noticeable when they're in a moving car -- as if the motion cancels out the dizziness for that period of time. It's quite common. For you, is it worse in the car?

 

As far as things to do, I'd say try to stay mobile within your capability. Stay hopeful. Distract. Read, listen to music, stay in touch with loved ones, etc. But as far as I know, there's nothing specific that we can do to make the dizziness go away, since it's a withdrawal effect and part of the larger syndrome of weird and wacky symptoms that everyone around here struggles with. We try to keep each other company around here with support, laughter and tears, and whatever gets us through it.

 

I'd rather not get into the details of how long this has been going on for me. The danger in comparing ourselves to one another is that it can make us focus on our fears. We're all different! Your dizziness might be gone tomorrow! So could mine -- or anyone else's too! When I first started hunting around on BB for other dizzy people, I came across someone who had been dealing with it for awhile. She was hesitant to say how long she'd been dizzy, and I admire her thoughtfulness. Well, her dizziness is gone now!

 

I wish we had some cold hard facts and stats on this issue, but they're so hard to come by. Suffice to say, people heal. We have lots of evidence of that in the Success Stories section. I recommend taking a huge dollop of that on a regular basis.

 

Take good care!

 

Thanks so much.  I actually get so bad that i struggle to walk.  I cannot ride in a car at all.  It is like to many things moving at one time.  The car, my brain, the other cars...lol.  My head gets overloaded.  I do not have much of a life or ability to function since this hit me 4 months ago.  Prior to that I was driving local and working as best as I could.  Now I can't do anything.  Super depressing.  Thanks for your kind words.  I really appreciate them.  I hope we all heal.

[[La...]]

Hi Jenn13,

I think we can all relate to that. Nope, not fun at all. We're all "in the same boat", as they say.

 

We WILL heal. We HAVE to. 

 

 

[[La...]]

Funny, amazing, writes- English-good dame you!

 

abcd's writing skills need a little work, but she speaks from the heart. 

 

As far as "Mal de Debarquement Syndrome" goes (said with snooty Parisian accent and upturned nose), I agree with abcd that it probably wouldn't help us, but it might be worth a shot for those of you experiencing "standing boatiness". But I wouldn't pin my hopes on it as a cure. No, I don't enjoy popping people's balloons, I just know what it's like to go down rabbit holes and come back empty handed.

 

Hey Shook,

I bet those rabbit holes are extremely crowded! Yup, they must have a slew of frustrated benzo-withdrawal sufferers who have gone down them on wayward and desperate hunts for cures for various symptoms. In Baylissa Frederick's book, she recalls spending oodles of money on remedies and treatments that didn't work. Time was what she needed.

[[La...]]

Here's a little story that I heard today:

 

I was talking to a friend of mine, and she started to tell me about a dizzy friend of hers who is pretty much bedridden by her disequilibrium. "Uh oh," I thought. Apparently, this person has gone to a number of doctors to get her eyes and her ears checked, and nothing has shown up. So, this friend of mine -- who happens to be quite familiar with my situation -- asked this friend of hers if she, perhaps, felt like she was on a boat. Yes, apparently she does. "Uh oh," I thought. Then my friend asked her friend if she was taking any medication, and yes, apparently she was. "Uh oh," I thought. Which one? Yes, our fave -- clonazepam. "DAMN!" I thought. And apparently, this woman has recently come off Cymbalta too.

 

I was really saddened to hear of it. One more walking -- or, more correctly, NOT walking -- wounded.  :'(

[Guest [...]]

Here's a little story that I heard today:

 

I was talking to a friend of mine, and she started to tell me about a dizzy friend of hers who is pretty much bedridden by her disequilibrium. "Uh oh," I thought. Apparently, this person has gone to a number of doctors to get her eyes and her ears checked, and nothing has shown up. So, this friend of mine -- who happens to be quite familiar with my situation -- asked this friend of hers if she, perhaps, felt like she was on a boat. Yes, apparently she does. "Uh oh," I thought. Then my friend asked her friend if she was taking any medication, and yes, apparently she was. "Uh oh," I thought. Which one? Yes, our fave -- clonazepam. "DAMN!" I thought. And apparently, this woman has recently come off Cymbalta too.

 

I was really saddened to hear of it. One more walking -- or, more correctly, NOT walking -- wounded.  :'(

[/quo

 

 

So very sad.Why can't more doctors get this,and stop prescribing benzos?It just isn't worth the very likely chance that their patients end up with messed up health and lives from these drugs.What are people supposed to do if they can't work for years,and can't get disability?Some people have no one to help them,family,etc.What becomes of them?This just shouldn't be happening.

[[Yo...]]

Sorry to hear that. You gonna ask her to join us, Lapis?

 

To IrishMonkey:

 

Lyme Disease is a common rabbit hole we go down. When I suggested it to my ENT, he laughed, "there are no ticks in winter". Indeed, I never observed a big red "bullseye" anywhere on my body.

 

I'd be willing to bet you don't have Lyme. The initial symptoms are fever, joint pain, and fatigue.

 

Like you, I developed an eye floater and also hear a hissing sound in quiet rooms since my first attempt at tapering.

 

The problem when tapering/withdrawing is that you'll blame every little new thing on it. It's said that everyone will develop eye floaters at some point, so I'm just blaming it on the aging process.

 

The tinnitus began after I reinstated the Clonazepam, so I don't know what caused it. Stress perhaps?

 

You mentioned getting it after a big panic attack. That I've heard of. A sudden emotional shock or sustained high level of stress is a listed cause. And while not strictly ototoxic, there's anecdotal evidence that anti-depressants can in a very small minority of people cause or exacerbate tinnitus.

 

Back to the floaters... I read that any sudden appearance of floaters should be checked out by an ophthalmologist to rule out any underlying diseases. That's one "rabbit hole" you should go down to give you peace of mind. You also mentioned seeing light flashes, so all the more reason.

 

Sensitivity to lights and busy patterns, getting dizzy at supermarkets, etc. is all part of what's called "visual vertigo". Too much visual information to process, too many attractive and colorful boxes and labels... Especially the cereal aisle!

 

I get anxiety when shopping. I just never liked shopping and can't wait to get the hell out. On the other hand, scrolling through pages of goods on eBay is oddly comforting to me... 

 

Anyway, get your eyes checked and good luck! And no more nights of hard drinking, right? 

 

 

[[Yo...]]

Here's the creator of your Blue Dog, Lapis! One Mr. George Rodrigue... Notice the similarities!

 

 

http://media-cache-ak0.pinimg.com/736x/ad/a6/20/ada6209fe5779dc627a8967a9eaea4c1.jpg

[[Yo...]]

Wise words on recovery...

 

https://m.youtube.com/watch?v=1g1MK9OhLkg

[[Ir...]]

Hello everyone. Been a long time since I've been on. I'm back to thinking I've Lyme disease again and not in SSRI withdrawal, considering I've never touched a benzo but have this terrible symptom that many on here seem to have - the rocking/swaying, undulating. Eye floaters, small bright white sprite that goes across my vision sometimes. Hissing in the ears while in a quiet room.

 

Does anyones become worse while sitting on the toilet? or worse in small cubicles? I hardly experience it in morning time, yet most seem to get it worse in the morning with cortisol spikes?

 

If I stare at grass, carpet or patterns, they oscillate or move in a wave like motion - anyone else with this?

 

Hi IrishMonkey,

Welcome back! I'm not sure if you saw this link that I posted twice in the last couple of weeks, but it's about Mal de Debarquement Syndrome. It has strikingly similar symptoms to what we're experiencing, so I'm going to post it here again for you to peruse. This is the symptom page, and while I'm not suggesting you have MdDS, I think the list of symptoms -- both primary and secondary -- is very handy to look at to see which symptoms go together. Visual issues are very common.

 

http://mdds.nyc/mdds-symptoms/

 

Hi Lapis! Hope you're well

 

Oh yeah, I've heard long of this syndrome. I've always fitted very well into the symptoms - the best very vestibular wise anyway. However I never fitted the long journey in a car, boat or plane. It happened just out of the blue after a night of drink, I felt like I was free-falling. Which apparently can happen with it too - but perhaps thats a separate conditon? Most doctors believe it to be hormone related. SSRI's and other classes of antidepressants help some people, but they largely don't work for them all. A lot of suffering with that syndrome - lasting years and once you have it and it goes, you're far more likely to get it back again. Terror!

 

What are your thoughts on it?

 

 

[[Ir...]]

Sorry to hear that. You gonna ask her to join us, Lapis?

 

To IrishMonkey:

 

Lyme Disease is a common rabbit hole we go down. When I suggested it to my ENT, he laughed, "there are no ticks in winter". Indeed, I never observed a big red "bullseye" anywhere on my body.

 

I'd be willing to bet you don't have Lyme. The initial symptoms are fever, joint pain, and fatigue.

 

Like you, I developed an eye floater and also hear a hissing sound in quiet rooms since my first attempt at tapering.

 

The problem when tapering/withdrawing is that you'll blame every little new thing on it. It's said that everyone will develop eye floaters at some point, so I'm just blaming it on the aging process.

 

The tinnitus began after I reinstated the Clonazepam, so I don't know what caused it. Stress perhaps?

 

You mentioned getting it after a big panic attack. That I've heard of. A sudden emotional shock or sustained high level of stress is a listed cause. And while not strictly ototoxic, there's anecdotal evidence that anti-depressants can in a very small minority of people cause or exacerbate tinnitus.

 

Back to the floaters... I read that any sudden appearance of floaters should be checked out by an ophthalmologist to rule out any underlying diseases. That's one "rabbit hole" you should go down to give you peace of mind. You also mentioned seeing light flashes, so all the more reason.

 

Sensitivity to lights and busy patterns, getting dizzy at supermarkets, etc. is all part of what's called "visual vertigo". Too much visual information to process, too many attractive and colorful boxes and labels... Especially the cereal aisle!

 

I get anxiety when shopping. I just never liked shopping and can't wait to get the hell out. On the other hand, scrolling through pages of goods on eBay is oddly comforting to me... 

 

Anyway, get your eyes checked and good luck! And no more nights of hard drinking, right? 

 

Hi YouShookMe,

 

Thanks for the reply.

 

It is indeed a rabbit hole, a deep dark, nasty rabbit hole which unfortunately I've landed myself into long long time ago at the very start of my journey of symptoms. The timeline certainly points towards SSRI withdrawal - as recalling back I did have 3 visits to my GP complaining of palpitations and dizziness, chest pains etc. I was checked out and told it was stress and anxiety. I did also RLS in my legs after eating at night time for a month or so. Some shooting pains in my head. That continued for a while and sort of left for a montth until I consumed a large amount of alcohol one night - provoking a panic attack/felt like a stroke which started the shooting head pains again but had like 80 a day, along with this swaying sensation. That was 16 months ago - off the SSRI 20 months ago.

 

Yeah, I never was 'unwell' prior to 'falling ill' with whatever the hell I have. It literally started with a sharp, quick shooting pain in my head, it had me on the floor in fear it was brain tumour. That started a week or two after stopping entirely. So yeah, no fatigue, no fever, no joint pain. No red rash. I'm just relying on what other Lyme people say - oh they recall a rash of up to 10 years prior to them falling ill. I don't know how that is possible, but apparently HIV can go symptom-less for 10+ years. Which I did have a rash on my back when I was 14 (10 years ago) - I've never been sick at all in them 10 years. Why would Lyme strike now?

 

Well... I did get 1 very dark and prominent single floater around the time I started Citalopram. Then 8 months off the drug I developed these translucent worm-like and translucent spots floaters which I've never had. The hissing started around then too.

 

I've been checked by a few opticians - I had an appointment every 2 weeks god love them to check out the eye symptoms. Especially the bright spot that use to zoom across my vision from time to time. They couldn't see anything at all.

 

 

[[SJ...]]

Last week I had no sxs and the wavey boaty symptoms I couldn't feel. Then I started to get sxs and the wavey on a boat feelings came back are now the worse they have ever been. I didn't notice them before while shopping etc but now I'm feel them everywhere. Like being rocked backwards and forwards. I have only 2.25mg of Valium to taper and this new side effect which is the worst by far seems to be getting worse. I'm guessing not much will help but getting off the rest of the benzo and my system adjusting which could take some time. Do people find waves or other sxs correlate with the dizziness , wavey etc ?

 

Thankyou Lapis2!

 

I appreciate your feedback. Guess it's time to accept that I'll be this way for a while. Have you seen an improvement in your condition?

[[La...]]

Hi SJDADL,

My dizziness ranges between 6 and 9 out of 10, with 10 being the worst. Just recently, I got a new computer, and I've noticed fewer 9s in the past few weeks, so that's been a nice change. Other than that, though, I still get the same range with -- for the most part -- an every other day pattern of better day/worse day. It seems very strange, but I've learned that other BBs get similar patterns. Sometimes I get two bad days in a row, but I never get two better days in a row.

 

As far as attitudes go, perhaps "acceptance with hope" might be a good stance to take, or "taking it one day at a time", or something like that. It's really difficult to figure out how to approach all of this. It can be a long, tough slog through the mud, but I keep looking to those Success Stories, and to people like Baylissa Frederick and Don Killian. I'm sure there are others too, but those are the ones I'm familiar with. The other thing we must keep in mind is that many others have gotten better from all of this, but we don't know their stories.

 

 

[[La...]]

Hello everyone. Been a long time since I've been on. I'm back to thinking I've Lyme disease again and not in SSRI withdrawal, considering I've never touched a benzo but have this terrible symptom that many on here seem to have - the rocking/swaying, undulating. Eye floaters, small bright white sprite that goes across my vision sometimes. Hissing in the ears while in a quiet room.

 

Does anyones become worse while sitting on the toilet? or worse in small cubicles? I hardly experience it in morning time, yet most seem to get it worse in the morning with cortisol spikes?

 

If I stare at grass, carpet or patterns, they oscillate or move in a wave like motion - anyone else with this?

 

Hi IrishMonkey,

Welcome back! I'm not sure if you saw this link that I posted twice in the last couple of weeks, but it's about Mal de Debarquement Syndrome. It has strikingly similar symptoms to what we're experiencing, so I'm going to post it here again for you to peruse. This is the symptom page, and while I'm not suggesting you have MdDS, I think the list of symptoms -- both primary and secondary -- is very handy to look at to see which symptoms go together. Visual issues are very common.

 

http://mdds.nyc/mdds-symptoms/

 

Hi Lapis! Hope you're well

 

Oh yeah, I've heard long of this syndrome. I've always fitted very well into the symptoms - the best very vestibular wise anyway. However I never fitted the long journey in a car, boat or plane. It happened just out of the blue after a night of drink, I felt like I was free-falling. Which apparently can happen with it too - but perhaps thats a separate conditon? Most doctors believe it to be hormone related. SSRI's and other classes of antidepressants help some people, but they largely don't work for them all. A lot of suffering with that syndrome - lasting years and once you have it and it goes, you're far more likely to get it back again. Terror!

 

What are your thoughts on it?

 

Hi IrishMonkey,

On that MdDS website, they have a classification called "Spontaneous Mal de Debarquement Syndrome", so perhaps that's what you're referring to. Around here, we know what caused our symptoms, so I wasn't really looking to that website for causes. I was more interested in whether a possible treatment for MdDS might address our type of dizziness too.

 

I don't know anything about Lyme Disease, but it does seem difficult to confirm if one has it. The challenge is that groups of symptoms can be part of numerous illnesses, and the diagnosis has to come about by process of elimination. Have you eliminated certain things already?

[Guest [...]]

Here's the creator of your Blue Dog, Lapis! One Mr. George Rodrigue... Notice the similarities!

 

 

http://media-cache-ak0.pinimg.com/736x/ad/a6/20/ada6209fe5779dc627a8967a9eaea4c1.jpg

 

 

:laugh:All in good fun of course!I wish I looked more like my dog!She's in great shape,can run like the wind,is beautiful and popular too!

 

 

 

[[Yo...]]

Opticians are only qualified to make eyeglasses...ophthalmologists are equipped to see floaters and perform tests to check for disease. Developing multiple floaters in a short time can be a red flag.

 

As far as "boatiness" from Benzo or psychiatric drug use, I don't know if there's such a thing as relapsing, or something triggering it after your systems get back to baseline.

 

But I'm probably going to avoid any long exposure to passive motion, whether by boat, plane, etc. until I'm healed, for fear of exacerbating the problem.

[[Yo...]]

 

2200,

 

Would it cheer you up if I said you looked like your dog?

[[La...]]

I can assure you that I do NOT look like my lapis blue dog!