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

[[Yo...]]

"He thought it would go away". Of course he did. No refund I guess!

[Guest [ha...]]

Yes...this is my "Tobie"...he's bigger now; was a year ago...Lapis2...I wasn't either-never knew mental akathisia existed; it's a terror in your brain/like an agitation..just pure agony...makes me cry hysterically....Shook...I'll try to eat better-is more for convenience now than anything b/c I'm basically brainless and have no capacity to cook or make good decisions...The tongue thing is more of a burning/poisoned taste...I get all the good symptoms... 

[[Yo...]]

Tobie's too cute!

 

[Guest [ha...]]

Thank you...he's bigger now and not as dark...white/gray/brindle..

[[La...]]

"He thought it would go away". Of course he did. No refund I guess!

 

Hey Shook,

Anyone who went to see this doctor would have known that it was an experimental treatment that was in the process of being studied. As with any medical treatment, outcomes are not guaranteed. Personally, I thought our member was very courageous for making the trip and for going through the process of consultation and whatever followed. Some of us can't get out of the house, nevermind make a trip somewhere!

 

Personally, I found it uplifting to hear -- even from afar -- that a doctor who specializes in dizziness thought that this person's dizziness would likely go away. Knowing that has helped me. The fact that this particular treatment didn't address benzo-related dizziness answers the question, "Can this dizziness be treated symptomatically?" It appears not -- both from our fellow member, but also from the one-year follow-up abstract. I've yet to read the full study, so I can't comment on that. It appears that the success rate for "spontaneous MdDS", which someone might call our dizziness, was rather low.

[[Yo...]]

Hey Shook,

My understanding is that she didn't have any change in her symptoms, but the doctor said he thought her dizziness would go away.

 

 

Maybe I read it wrong, and cynically. Did the doc believe his treatment would work, or that the person's dizziness would go away in time despite it not working?

 

If the latter, I take heart in what he said too, but get much more solace from the success stories right here. And for sure, she or he was courageous to go for the treatment with the knowledge that it was a long shot. But it did answer the question, as you said... Time is the only key that'll fit our locks!

 

So did you order your genuine, officially-licensed Tin Man clock yet? 

 

 

 

[[...]]

Lots to comment on here, will have to try and come back (can't type much right now).  But this part, Lap ...

 

It appears that the success rate for "spontaneous MdDS", which someone might call our dizziness, was rather low.

 

Why would you consider benzo/SSRI-related boatiness "spontaneous MdDS"?  The latter terminology applies when the condition is idiopathic, right?  Personally, I see our - (or I should say "your" considering I'm such an anomaly  ) - condition in its own separate box.  Wouldn't you say?  The real common denominator, unfortunately, is the usual "We have no idea what's going on or how to treat it" 

 

---

 

Htc, it's great to see you here!  That Shook character who picked you up elsewhere  well, now I've seen it all, getting a non-dizzy to come and hang out on the rocking boat with all us swayers ... LOVE IT!!!   It's a good place to be, we'll keep you grounded here (hmmm, weird choice of word, grounded, considering  ) ... and have some fun and giggles along the way.

 

You rock, Shook, no really you do.  Rock.

 

Hi and hugs to 2200 and Becks and anyone else I may have missed (can't see further down).

 

PS - My fave cereal as a kiddie was Cocoa Krispies!    And coconut oil, honey, cinnamon in my oatmeal!

 

[Guest [...]]

Thanks 2200...I'm already nuts so I guess I've found my utopia

 

 

Is that your dog on your avatar?What a cutie!

[[Yo...]]

Thank you...he's bigger now and not as dark...white/gray/brindle..

 

I declare Tobie to be the mascot of this thread!

[Guest [...]]

I don't know how you dames do it. In high heels no less. Y'all get a 10! 

 

http://curitibainenglish.com.br/wp-content/uploads/2013/10/1950s-American-housewife.jpg

 

Love it!

 

I remember those fun old TVs,and how we were our parents little remote controls!We always had the fun job of switching the TV,or moving the rabbit ears for mom and dad while they relaxed.

[[Yo...]]

Lots to comment on here, will have to try and come back (can't type much right now).  But this part, Lap ...

 

It appears that the success rate for "spontaneous MdDS", which someone might call our dizziness, was rather low.

 

Why would you consider benzo/SSRI-related boatiness "spontaneous MdDS"?  The latter terminology applies when the condition is idiopathic, right?  Personally, I see our - (or I should say "your" considering I'm such an anomaly  ) - condition in its own separate box.  Wouldn't you say?  The real common denominator, unfortunately, is the usual "We have no idea what's going on or how to treat it" 

 

---

 

Htc, it's great to see you here!  That Shook character who picked you up elsewhere  well, now I've seen it all, getting a non-dizzy to come and hang out on the rocking boat with all us swayers ... LOVE IT!!!   It's a good place to be, we'll keep you grounded here (hmmm, weird choice of word, grounded, considering  ) ... and have some fun and giggles along the way.

 

You rock, Shook, no really you do.  Rock.

 

Hi and hugs to 2200 and Becks and anyone else I may have missed (can't see further down).

 

PS - My fave cereal as a kiddie was Cocoa Krispies!    And coconut oil, honey, cinnamon in my oatmeal!

 

 

My thoughts exactly. Missed ya abcd! 

[Guest [ha...]]

We had a huge antenna outside the house and had to go out and move it...leaving the door open so someone could yell, "Now?"...turn..."Now?"....then at last, reception improved

[Guest [...]]

Yes...this is my "Tobie"...he's bigger now; was a year ago...Lapis2...I wasn't either-never knew mental akathisia existed; it's a terror in your brain/like an agitation..just pure agony...makes me cry hysterically....Shook...I'll try to eat better-is more for convenience now than anything b/c I'm basically brainless and have no capacity to cook or make good decisions...The tongue thing is more of a burning/poisoned taste...I get all the good symptoms... 

 

I know that type of anxiety you are talking about hardtocope.I still get it,but it will let up later in the day a bit now.For months I couldn't even cook dinner without crying and shaking,I was so over whelmed by anything small.

 

I still have my husband do the Costco shopping,or I order online.Just cannot handle the stress.

[Guest [ha...]]

I'm sorry 2200...I know; I'm lying here wondering how I'm going to even survive this-it's like just an inner agitation that never ceases until I sleep...it's good you have your husband; I just have my elderly mom and 14-year old son...I worry I won't be able to support him again.

[Guest [...]]

We had a huge antenna outside the house and had to go out and move it...leaving the door open so someone could yell, "Now?"...turn..."Now?"....then at last, reception improved

 

 

:laugh:Yes,the roof antenna!!!

 

 

[Guest [ha...]]

A definite childhood memory, taking turns with my sister...ours was in the ground and extended into the air beside the house so luckily didn't have to climb the house...lol

[[Yo...]]

"Oh don't worry honey! That thunder sounds miles away! A little to the left now!"

[Guest [ha...]]

Lol...I remember going out in the wind too...would take turns with my sister; most of the time though, my dad would do it...

[Guest [...]]

Hi abcd!How are you doing?Any improvements on your symptoms?

 

Great choice of cereal there girl-Cocoa Krispies!They make excellent Rice Krispie treats too!

 

hardtocope,are you a caregiver for your mom?Having a teenager is pretty stressful too,and then worrying about working and how to get by if you can't must be so hard.Keep it in your mind that you could very well be one of the lucky ones who heals fast.We hear that from some people,that they quickly get back to normal,and don't have symptoms as long as some of us.

 

 

 

[Guest [...]]

"Oh don't worry honey! That thunder sounds miles away! A little to the left now!"

 

 

Shook,you should be a commedian! :laugh:

 

 

[Guest [ha...]]

Thanks 2200...no, my mother has had to caregive for me through this; have been non-functional...I wish I was the one taking care of her...I hope to be one of those lucky ones but just don't see it; have anxiety/agitation too bad...but thanks for the well wishes.

[[La...]]

Lots to comment on here, will have to try and come back (can't type much right now).  But this part, Lap ...

 

It appears that the success rate for "spontaneous MdDS", which someone might call our dizziness, was rather low.

 

Why would you consider benzo/SSRI-related boatiness "spontaneous MdDS"?  The latter terminology applies when the condition is idiopathic, right?  Personally, I see our - (or I should say "your" considering I'm such an anomaly  ) - condition in its own separate box.  Wouldn't you say?  The real common denominator, unfortunately, is the usual "We have no idea what's going on or how to treat it" 

 

---

 

Htc, it's great to see you here!  That Shook character who picked you up elsewhere  well, now I've seen it all, getting a non-dizzy to come and hang out on the rocking boat with all us swayers ... LOVE IT!!!   It's a good place to be, we'll keep you grounded here (hmmm, weird choice of word, grounded, considering  ) ... and have some fun and giggles along the way.

 

You rock, Shook, no really you do.  Rock.

 

Hi and hugs to 2200 and Becks and anyone else I may have missed (can't see further down).

 

PS - My fave cereal as a kiddie was Cocoa Krispies!    And coconut oil, honey, cinnamon in my oatmeal!

 

 

Hey abcd,

When using the term "spontaneous MdDS", I'm was referring to the lingo from the study itself. There's actual MdDS, which happens after someone gets off a boat, plane or other vehicle and becomes dizzy. And the only other type of MdDS that the study addressed was called "spontaneous MdDS", which doesn't involve motion. Of course, ours is most definitely NOT spontaneous (!), but if someone went to that doctor and took part in the study, my understanding is that they'd either be in one category or the other. In the abstract I read, I believe the success rate for the "spontaneous" cases were about 19% -- lower than with the actual MdDS.

 

So, I hope that's clear. I was only talking about this particular study and this particular terminology.

 

And Shook, to address your comment, yes, I believe the doctor meant that this person's dizziness would go away despite the fact that the experimental treatment might not have helped her at the time. The website made is quite clear that the treatment was experimental.

 

Here's the home page quote from the website:

 

"Since 2014, we provide the first experimental treatment of MdDS, which is successful in approximately 75% of cases who contracted MdDS by motion events, and about 50% of cases who acquired MdDS spontaneously (no apparent motion involved)."

 

http://mdds.nyc/ 

[[La...]]

Hey Shook,

My understanding is that she didn't have any change in her symptoms, but the doctor said he thought her dizziness would go away.

 

 

Maybe I read it wrong, and cynically. Did the doc believe his treatment would work, or that the person's dizziness would go away in time despite it not working?

 

If the latter, I take heart in what he said too, but get much more solace from the success stories right here. And for sure, she or he was courageous to go for the treatment with the knowledge that it was a long shot. But it did answer the question, as you said... Time is the only key that'll fit our locks!

 

So did you order your genuine, officially-licensed Tin Man clock yet? 

 

No, Shook, no Tin Man clocks for Little Lapis today. Must save money. No toys now. Necessities only. 

 

Instead of purchasing any officially-licensed Wizard of Oz toys or souvenirs, I watched the video clip you shared, "If I Only Had a Brain". Perfect!

[[Yo...]]

2200

 

 

HTC, 2200 is right, you could heal faster than you think. In the meantime try to be kind to yourself and take care of yourself in ways that you can. Move as much as you can...get some sunshine, even if just through the window...be mindful of how you breath...and cut back on the chicken strips.   

 

 

Little Lapis, it's not a toy... It's a deeply symbolic timepiece, with precise Chinese movement! 

[Guest [ha...]]

Thank you Shook...I do like the chicken strips though...