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

[[La...]]

Ah, 2200, the food thing is so crazy, isn't it? I think we all have to figure out for ourselves what works, what's comfortable, what makes us feel good. People eat for different reasons -- nutrition, comfort, pleasure, social reasons, etc. But the studies are all over the place, and as you said, they often conflict. It just ends up being confusing. 

 

I watched a documentary called "What The Health?" on Netflix this past weekend. It connected food and health issues, with the larger picture of food production, Big Pharma and certain health-promotion organizations. Suffice to say, it got me thinking about all of those things and how my food choices fit into the picture. It's an American documentary, so I don't really know if it's the same here in Canada, but there's a obviously a connection between food and health no matter where you live. A few scenes at the end show some people who made massive changes in their diets and had excellent, life-changing results -- including decreasing or stopping a lot of their meds (diabetes, blood pressure, pain, etc.). Interesting stuff. I wrote down many of the names of the doctors who were featured, and I might look them up in order to find out a bit more. So interesting!

 

I've got an 8 today, so the truth is...I'm pretty bummed. I never EVER get two less-dizzy days in a row, and it feels so cruel. I want a break so badly. I try to keep my spirits up, but they're really low right now. How about you, 2200? How are you doing?

[Guest [...]]

Lapis,sorry about the 8.

 

It gets old fast.It's such an unlucky number in the dizzy game!I hope you get two good days in a row soon,it sure is your turn!

 

I am in a weird pattern now of dizzier mornings #5s that get better as the day goes on.Yesterday I got a good break in the afternoon,which made me want to get a bunch of things done while it lasted.

 

But the off balance feeling is back again this morning,which made me cranky trying to get the chores done!

 

Hoping it will ease towards afternoon again today!

 

We could write a country song about all this misery,couldn't we!

 

'''I lost my peedoodle somewhere between Canada and Texas"'maybe?

[[La...]]

Wait, 2200, shouldn't it be a blues song? Or if it IS a country song, it has to be the hurtin' kind. Of course, you know that I have my "Music For A Dizzy Dame" list that's really, REALLY long, so we can always choose one of those great titles, but I guess it would be a good creative project to write a hurtin', bluesy-country tune about our woes. Are there any floaty-boat themes in country-blues tunes? If not, I guess we can start a trend. 

 

I can relate to the cranky thing. I also feel grumpy. And those a great words to use in our new song!

 

In the meantime, I have to pretend not to be cranky or grumpy, so I "Put On A Happy Face", which is another good song for all of us!

 

It's good that you have some variability in your dizziness, because then you can be hopeful about getting breaks during the day. For whatever reason, if I get an 8 like this, then it's an 8 all day. It makes me wired as heck, and I just want to escape my body. That's pretty much where I'm at right now.  :'(

 

Please say hello to your frogs for me, 2200. In the meantime, I'm sending you nice puppy vibes from the neighbour's cute little floppy-footed guy. I've seen her out with him a couple times already today. She keeps carrying him because he's so cute. When can he pee, I wonder? Or perhaps, he's all peed out (which is, of course, connected to peedoodles)!

[Guest [...]]

Wait, 2200, shouldn't it be a blues song? Or if it IS a country song, it has to be the hurtin' kind. Of course, you know that I have my "Music For A Dizzy Dame" list that's really, REALLY long, so we can always choose one of those great titles, but I guess it would be a good creative project to write a hurtin', bluesy-country tune about our woes. Are there any floaty-boat themes in country-blues tunes? If not, I guess we can start a trend. 

 

I can relate to the cranky thing. I also feel grumpy. And those a great words to use in our new song!

 

In the meantime, I have to pretend not to be cranky or grumpy, so I "Put On A Happy Face", which is another good song for all of us!

 

It's good that you have some variability in your dizziness, because then you can be hopeful about getting breaks during the day. For whatever reason, if I get an 8 like this, then it's an 8 all day. It makes me wired as heck, and I just want to escape my body. That's pretty much where I'm at right now.  :'(

 

Please say hello to your frogs for me, 2200. In the meantime, I'm sending you nice puppy vibes from the neighbour's cute little floppy-footed guy. I've seen her out with him a couple times already today. She keeps carrying him because he's so cute. When can he pee, I wonder? Or perhaps, he's all peed out (which is, of course, connected to peedoodles)!

 

 

 

Lapis,I am so glad to hear that you get grumpy too!I thought maybe it was just me!

 

This stuff is so stressful,it doesn't take much to feel like a grouchy grizzly bear, that's for sure!

 

Ahh the neighbor's puppy!Lucky people!I love puppies,but don't think I could handle house breaking a little guy right now!

 

I wonder if your neighbor carries him so he doesn't leave a little something behind(peedoodle) on his way outside? 

[[La...]]

Well, my guess, 2200, is that she didn't have children, so she got a puppy instead. Lots o' cuddling going on there! They're awesome companions, aren't they? They give unconditional love -- well, as long as you feed them and walk them and take care of them. And they're so darned cute that you can't help but fall in love with them. 

 

You are most definitely NOT alone in your dizziness-related grumpiness/crankiness/grizzly bear-ishness! I feel like screaming today. Dizzy, in pain, angry at the universe, frustrated, fed up, crying...

 

Yup, not a good day here.  :'(

 

 

[[Yo...]]

What does a grumpy 2200 look and sound like...? 🤔

 

I bet she makes one batch of cookies instead of two, and says "darn" a lot. 

 

 

Lapis,

 

I'm glad you could find some divertissement on YouTube!

 

Pets are the best therapy though, aren't they? Does your neighbor sometimes bring her dog over?

 

 

abcd,

 

For me the floating started with a bang. It didn't creep up or build to a crescendo. It just appeared.

 

But it did evolve a bit, moving to the head, like yours did. I remember thinking, "is this an improvement?" lol

 

Since then it's been in the head as well as body... But a queer thing happens from time to time... I'll feel that palpable pushing sensation get "trapped" at the base of my spine. And it kind of sits there and throbs, like a bundle of nervous energy trying to break free...then it does, and it's back to floating on the high seas. Weird, huh? lol

 

Trapped nerves maybe? But how did the feeling migrate to my head? You tell me! But my back muscles are tight. There's an acupressure mat on Amazon I'm looking at...

 

 

Anyhoo. I hope you're all hanging in ok.

[[La...]]

Hey Shook,

There's most definitely lots o' divertissement on Youtube, but I try to balance learning with absolute stupidity. The cat and dog videos I watched last week did not provide much in the way of education, but they did afford me a few smiles. I also finished my 370-page book yesterday, and read some news stories. I just need to keep my brain active and functional while my body flops around on the high seas of this beastly benzo boat.

 

Unfortunately, I haven't met my neighbour! I just see her outside walking her dog. If I can get out of here one day, I'll definitely introduce myself and ask if I can borrow her dog for a day. I'd chat and play with it for hours!

 

Take care, Shook, and may you find some great distraction on Youtube tonight!

[[so...]]

Lapis,

 

Please share any good book titles you love.  I need to drop into a world other than this withdrawal.  I would like some recommendations when you have the time.

 

Thanks, Sofa

[[Yo...]]

I really enjoyed Robert Graves' excellent I, Claudius and the sequel Claudius the God and His Wife Messalina. Not an avid reader (prefer cat videos), but they were gifts from my bro, who's a history buff.

 

Then you can treat yourself to the equally excellent BBC production...

[[La...]]

Lapis,

 

Please share any good book titles you love.  I need to drop into a world other than this withdrawal.  I would like some recommendations when you have the time.

 

Thanks, Sofa

 

Hi Sofa,

I can highly recommend just about anything by JoJo Moyes, since I've read at least five of her books in the past year. A great novelist! I also loved Trevor Noah's "Born A Crime". While it's not a novel, it was an unexpected treat that got me smiling and thinking, and I actually haven't stopped thinking about it. One other recommendation would be the pair of books by Graeme Simsion called "The Rosie Project" and "The Rosie Effect". Check out goodreads.com for synopses and book reviews on these books, and you can see if anything grabs you. Happy Reading!

[[so...]]

Thanks so much Lapis!  Maybe these books will carry me through the rest of this process.  I'm dealing with a big rumination phase and these books may just save me!

 

Thanks again,

 

Sofa

[[so...]]

Thanks, Shook.  I will check out those books.  Looks like I've got some great distraction in my future.

 

Sofa

[[...]]

You're here a lot, Sofa, what have I missed, are you dizzy again?

[[Ir...]]

Do we essentially have spontaneous mal de darquement sundrome? I've found a group on FB that is titled just that and loads of people with the rocking and swaying but from various reasons. Some don't event know how theirs began.

[[Yo...]]

Thanks, Shook.  I will check out those books.  Looks like I've got some great distraction in my future.

 

Sofa

 

I wasn't particularly interested in reading about Imperial Rome. But there's plenty of intrigue along with the meticulously-researched history, as told by Claudius, who's a compelling and sympathetic character. If you want to get immersed in another time and place, they're great books.

 

You can also binge-watch Game of Thrones or something to quiet your chatty brain.

[[La...]]

Do we essentially have spontaneous mal de darquement sundrome? I've found a group on FB that is titled just that and loads of people with the rocking and swaying but from various reasons. Some don't event know how theirs began.

 

Hi IrishMonkey,

There are lots of causes of dizziness. From what I can tell, certain things can be eliminated by doing testing (vestibular, vision, cardiac, etc.), and then you're left with possibilities of causes. For those of us who took medications that are known as "vestibular suppressants" (benzodiazepines, anticholinergics, antihistamines), the cause may be clearer than for those who did not. In those cases, the word "idiopathic" may be used, i.e. of unknown cause or origin.

 

While I certainly have the same symptoms as those with "Mal de Debarquement Syndrome", there's a cause of my dizziness. It wasn't "spontaneous" at all. For others, though, it may indeed be spontaneous or idiopathic. One of our dizzy buddies was told her case was "idiopathic", but since she was taking a vestibular suppressant at the time, I'd have major doubts about the accuracy of that pronouncement. I'm not a doctor, but it's just an illogical finding. Vestibular suppressants are known to interfere with the process of vestibular compensation. It's in the ENT textbooks. I actually wrote it out and brought it to a doctor's appointment.

 

Alcohol, which affects the same neurotransmitter in the brain as benzodiazepines -- namely, GABA -- can cause a similar type of dizziness. The SSRIs, which affect other neurotransmitters, can also cause a similar type of dizziness. According to one of the articles I read and posted here, there are at least eight neurotransmitters involved in the vestibular system, so I would venture a guess that any medication that affects those neurotransmitters could cause dizziness. There are other medications that are considered "ototoxic", meaning they affect the ears. That's a very long list, and it includes NSAIDs, antibiotics, and a whole host of others. They can affect hearing and balance. (Check online for the full list, if you're interested.)

 

In our situation, it seems that the best answer -- at least, for now -- is time. We have examples from fellow dizzy BBs that time helped. And that's time WITHOUT further medication or other substances that might cause dizziness.

 

 

[[so...]]

Abcd,

 

I enjoy many people on this thread.  Do you mind my being here?

 

Sifa

[[La...]]

Everyone is welcome on our floaty boat! There are enough Personal Flotation Devices for all. 

[[Yo...]]

Do we essentially have spontaneous mal de darquement sundrome? I've found a group on FB that is titled just that and loads of people with the rocking and swaying but from various reasons. Some don't event know how theirs began.

 

That can be difficult to diagnose for certain. I've been wondering that myself.

 

Yours began after a severe panic attack, so it might not be from benzo withdrawal. I read somewhere that research is being done on the effects of emotions on the vestibular system. If memory serves, it said that the part of the brain that processes emotions is located right next to the part that plays a role in vestibular function, and that the former could adversely affect the latter.

 

Anxiety is well-known to cause dizziness and balance issues... But MdDS is a different animal. Take the anxiety away and the dizziness should fade. But with MdDS, a switch has been flipped... And though it's described as "self-limiting", there's no telling when it'll be righted. Could take months or years. So little is known about it.

 

I read about a woman who got it "spontaneously". Hers was like mine. She didn't feel it standing so much, but it was there when she was still, and especially when lying flat... It just went away for her one day after 8 months. Why 8 months? What was going on in her brain all that time that suddenly got righted in a flash? Nobody can say. Hence the "syndrome" label.

 

Lapis, I appreciate the logic in saying it's the benzo, since it's a vestibular suppressant as you point out. It's possible and even likely, but not conclusive. Of course, it's hardly everyone in benzo winthdrawal that presents with dizziness (there's not a ton of traffic on this thread, though I'm sure there are lurkers)... I'd been suppressing panic attacks for a long time prior to it hitting me. Maybe that flipped my switch.

 

Who knows. It just amounts to chit-chat. Just gotta wait it out...

[[La...]]

Fair play, Shook. I just think that logic should be used in the case of people becoming dizzy when taking medications that are well known to cause dizziness. It should at least be stated as a very possible cause, even in the absence of the kind of testing we all want. The neurologist I saw said that we don't have testing at present that can, without error, tell us about all kinds of dizziness.

 

It's hard to get "conclusive" information, but I do think people should get testing that can eliminate those things that ARE possible to eliminate. It's about differential diagnosis.

[[Yo...]]

I think we're on the same page. "Likely but not conclusive", and nagging questions left unanswered even after rigorous testing. Dizziness—however you define it—just happens to be one of, if not the most difficult symptom to pin down with a correct diagnosis. Lucky us!

[[La...]]

Agreed, Shook! There are so many papers in PubMed that point to this issue. I do hope more research is underway, because apparently, dizziness is one of the most common symptoms that takes people to the Emergency Rooms of hospitals here, there and everywhere. It can be the sign of something quite serious, but it can also be quite benign. Benign, however, does not mean bearable or okay or comfortable. It is -- at least, for some of us -- completely disabling.

 

In the meantime, it's good to have the company of other dizzy, slightly-off-kilter (!) people here. 

[[La...]]

Shook,

Who's your new buddy?! I don't recognize the blue bear. There should be a Shook's New Picture Quiz, e.g. Identify Shook's New Picture, Explain the significance of Shook's New Picture, etc. 

[[Yo...]]

Yeah, I'm tired of hearing from well-meaning ppl that this is "benign" and not life-threatening. No, it has "only" taken my peace away, dipshit. lol

 

That's "Grumpy", one of the Care Bears. I guess you never watched the cartoon, or heard the Care Bear Countdown theme song. 

 

It relates to the countdown I've begun in my sig. Soon I'll be blaming everything on w/d, including worsening hemorrhoids.

[[Ir...]]

Do we essentially have spontaneous mal de darquement sundrome? I've found a group on FB that is titled just that and loads of people with the rocking and swaying but from various reasons. Some don't event know how theirs began.

 

That can be difficult to diagnose for certain. I've been wondering that myself.

 

Yours began after a severe panic attack, so it might not be from benzo withdrawal. I read somewhere that research is being done on the effects of emotions on the vestibular system. If memory serves, it said that the part of the brain that processes emotions is located right next to the part that plays a role in vestibular function, and that the former could adversely affect the latter.

 

Anxiety is well-known to cause dizziness and balance issues... But MdDS is a different animal. Take the anxiety away and the dizziness should fade. But with MdDS, a switch has been flipped... And though it's described as "self-limiting", there's no telling when it'll be righted. Could take months or years. So little is known about it.

 

I read about a woman who got it "spontaneously". Hers was like mine. She didn't feel it standing so much, but it was there when she was still, and especially when lying flat... It just went away for her one day after 8 months. Why 8 months? What was going on in her brain all that time that suddenly got righted in a flash? Nobody can say. Hence the "syndrome" label.

 

Lapis, I appreciate the logic in saying it's the benzo, since it's a vestibular suppressant as you point out. It's possible and even likely, but not conclusive. Of course, it's hardly everyone in benzo winthdrawal that presents with dizziness (there's not a ton of traffic on this thread, though I'm sure there are lurkers)... I'd been suppressing panic attacks for a long time prior to it hitting me. Maybe that flipped my switch.

 

Who knows. It just amounts to chit-chat. Just gotta wait it out...

 

I had the severe panic attack from the sensations I was experiencing - 5 months after CT SSRI. Never had a panic attack in my life prior to that, hence I didn't recognise it as one and thought it was taking a stroke. A stroke at 23...