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

[[Yo...]]

 

http://4.bp.blogspot.com/-2CfAnVKtbn0/Ub4hcQhKMiI/AAAAAAAAWLs/G0xIhBotO7I/s1600/DSC_9392.jpg

 

[[Be...]]

What's Tina Louise, Ginger, doing these days.  I can't imagine she's doing any acting now without facelifts. 

[[...]]

Lol, Shook, yeah, congrats to you!!!

 

[[Yo...]]

Thanks abcd! But that couldn't have been me. Had to be your vibrating pillow!

 

 

Becksblue,

 

Tina Louise is comfortably retired I think. At 83, she'd need a face transplant to revive her career.

 

Hmm... Interesting. I've typed "she" countless times before, but today my iPad suggested that I might be trying to type "shemale". Apple is very progressive. 

[[Be...]]

I think Tina Louise would look good for an older lady if she gained some weight.  She's too thin.  She was beautiful when she was young.  Aging is so cruel on women. 

[[La...]]

Hi Dizzy Buds,

I posted something a little while back, but I'm not sure if anyone had a chance to look at it. I was hoping to hear what some of you think. It's the website from the NYC doctors who are doing an experimental treatment for Mal de Debarquement Syndrome. The symptoms are remarkably similar to what many of us here experience, and by this definition, we would be considered to have a "spontaneous" form of Mal de Debarquement. I'll post the main page, the symptom page and the recommendations page.

 

Have a look around the site too, if you're interested, and share your thoughts. I'm curious as to what everyone thinks.

 

http://mdds.nyc/

 

http://mdds.nyc/mdds-symptoms/ 

 

http://mdds.nyc/recommendations-for-mdds-patients/

[[...]]

Oh, Lapsy, I'm glad you re-posted, I knew you were hoping for some feedback and I went looking for them the other night and then got distracted and forgot.    I'll take a peek at them later today and report back. 

 

Hope you, and all the crew here, are having an easier day today.

 

[[La...]]

Thanks, abcd. Rockin' an 8 today. Not too pleased about it. I'd love to hear your thoughts on the website, though.

[Guest [...]]

Hi Dizzy Buds,

I posted something a little while back, but I'm not sure if anyone had a chance to look at it. I was hoping to hear what some of you think. It's the website from the NYC doctors who are doing an experimental treatment for Mal de Debarquement Syndrome. The symptoms are remarkably similar to what many of us here experience, and by this definition, we would be considered to have a "spontaneous" form of Mal de Debarquement. I'll post the main page, the symptom page and the recommendations page.

 

Have a look around the site too, if you're interested, and share your thoughts. I'm curious as to what everyone thinks.

 

http://mdds.nyc/

 

http://mdds.nyc/mdds-symptoms/ 

 

http://mdds.nyc/recommendations-for-mdds-patients/

 

 

Hi Lapis!I read the links you put up,and the secondary symptoms sure strike home with me!It is amazing how your balance affects so many things,especially your eyes.I had tons of light sensitivity the first 2 or so years,and now I get it off and on,especially in the stores.The TV flickers can aggravate my eyes if I watch without a lamp on,or if my eyes are tired.An extra dizzy day makes my vision very off too.

 

I don't think I would bother with the expense of blue light goggles myself.I would just walk away from the computer or TV for awhile if it started getting to me.I do that now,and am trying not to spend as much time on line.I go outside and walk around,or should I say stumble around!

 

I read some information by Dr. Sinatra about "grounding.''He said that we are exposed to so much electromagnetic devices that we need to get grounded by going barefoot on the grass,barefoot on concrete basement floors,or wearing leather soled shoes(moccassins,etc.)so we stay grounded.He even mentioned grounding pads for under computer chairs and for our beds.

 

I think they are somehow connected/ grounded to an outlet in your home,since they have to be grounded.

 

Sounds weird,but I think in this case there is some truth to the calming and health balance that comes with grounding.And we do use too many devices that create an electromagnetic field around us.

 

It's like people who walk barefoot on the beach on vacation feel so much more relaxed and peaceful,same for walking around outside and touching the ground while gardening.It grounds us.

 

Anyway,sorry to babble,but just wanted to add that to the mix!

 

I so wish they could fix the Mal de Debarquement Syndrome,then maybe we would be helped by it too!!

 

I do have in the back of my mind what my doctor said to me about 3yrs.ago.He said often dizziness burns itself out over time.I hope so,but if it is so it sure is taking it's sweet time about it!  

[[La...]]

Hi 2200,

Interesting! I'm not sure about the goggles either, but I learned something when I got my new computer a few weeks ago. Some of the computer-related dizziness has decreased. It was quite noticeable too. With my old computer, I found that everything was blurry all the time, so I'd put on my reading glasses. Then my dizziness went through the roof! Now, with the new computer, the screen is much clearer, and I don't always have to use my reading glasses. Big difference! Also, with more ambient light from outside (i.e. now that it's spring), I can see the screen better.

 

 

[[Yo...]]

When I first got this and got inner-ear disorders ruled out, I read up on MdDS (I can pronounce it correctly cuz I speak French!), and found news about the doctor in New York.

 

He considers a 50% reduction in symptoms as a "success", but some have relapsed months later. Some were completely cured. So it sounds pretty individual. I'm too lazy to check, but think it involves putting you in a chamber and there's a moving background that is adjusted in speed and stimulates your brain to make the necessary compensation.

 

I flew to Memphis and went on a 2 hour boat tour of the Mississippi a month before the boatiness started. I've read of MdD cases where the symptoms didn't start till days after exposure to passive movement, so I thought maybe I had a super delayed reaction that was somehow triggered? So little is known about it that anything is possible. But I was nearing the end of my taper at the time, so more than likely it's the Benzo.

 

The symptoms are similar, and for some of you identical, but true MdDS sufferers don't have a "down regulated" CNS. We have an underlying problem that has disturbed our vestibular system. I don't believe the treatment would help.

 

Lapis, the Wizard of Oz...that charlatan hiding behind the curtain...would give us heart-shaped clocks, cuz only time can heal us. You can buy one here! 

 

http://www.a2z-kids.co.uk/accessories-c4/categories-c78/props-other-accessories-c12/tin-man-heart-clock-accessory-p57

 

http://images.a2z-kids.co.uk/images/products/zoom/1337163173-48300800.jpg

[[La...]]

Hi YSMANL,

Thanks so much for sharing that info! When this doctor's study came out, I shared it around here. I'm pretty sure that one of our members has actually gone to NYC to meet with this doctor. My question has always been this: If we have similar symptoms to MdDS but they were brought about by a different cause, can this treatment help us? It looks like the success rate for "spontaneous MdDS" is about 50%.

 

Anyway, for sure, I'm definitely going to buy a cool Tin Man Heart Clock, because we've been going on and on about The Wizard of Oz around here for ages. We're all big fans! Glinda may be able to help us if the Wizard can't. In the meantime, I've got my Cowardly Lion pendant right here, and he has his badge of courage. I was hoping he could share some of it with me for days like today. I'm pretty dizzy (8 out of 10 on my scale), in pain and not a happy camper.

[Guest [...]]

Lapis,you have a ton of courage girl!

 

I want want one of those heart clocks too YSMANL!

 

About the Wizard of Oz,I would say I have to be a Toto.I feel like I am running around like a yappy,nervous terrier! 

[[Yo...]]

Sorry you're scoring an 8 today. And I didn't want to dash away all hope for treatment. I just think it's a case of apples and oranges. Our lazy-ass CNS just needs to get back up to speed and packing the GABA receptors. For those of you in protracted withdrawal, it's fair to ask, "yeah? Well when the f*** will that finally happen?" I read all the time that our bodies are supposed to be great at healing and self-regulating, but these pills can pack a mean punch, especially if you're sensitive to meds.

 

I read about a poor woman who got MdDS after going on that swinging boat ride at an amusement park. And if you want to talk "spontaneous", there's a case of another who one day simply bent down to pick something up and got chronic dizziness which she now accepts as "the new normal". The doctors, needless to say, are baffled. Dizziness, as you mentioned before Lapis, is one of the most common emergency room complaints... There can be so many causes.

 

Anyway, I'm gonna jump off the Zoloft this week. Wish me luck on my Clonazepam taper! 

 

 

2200,

 

 

I'm definitely one of the flying monkeys.

[[La...]]

Mr. Shook, I must object! You're too nice to be a flying monkey! Those dudes always scared the poop out of me when I was watching it as a kid.

 

I must agree, though, that I have the sentiments you described, as in "When the eff will that [healing] finally happen?"  I'm most certainly "sensitive to meds".

 

2200, I think you make a most delightful Toto! Everybody loves Toto too! 

[[Yo...]]

Aww thanks, Lapis. Nobody's ever told me I was too nice to be a flying monkey. 

 

If only I got more encouragement like that when I was a kid my life might've turned out differently! 

 

Those monkeys are indeed creepy, but that's why I like them! I was the boy who loved monsters and creepy-crawlies, and I was always the bad guy when playing with my brother. The Darth Vader to his Luke Skywalker, the Cobra Commander to his Duke, the Mumm-ra to his Lion-O... The bad guys were way cooler!

 

BTW I was just reminded of a song with the line, "the wizard didn't give the Tin Man anything he didn't already have". Anyone know it?

[[Yo...]]

Oh found it!

 

[Guest [...]]

Oh found it!

 

 

 

I remember that song!1974,aah the seventies!The good old days!

[Guest [...]]

Mr. Shook, I must object! You're too nice to be a flying monkey! Those dudes always scared the poop out of me when I was watching it as a kid.

 

I must agree, though, that I have the sentiments you described, as in "When the eff will that [healing] finally happen?"  I'm most certainly "sensitive to meds".

 

2200, I think you make a most delightful Toto! Everybody loves Toto too! 

 

 

Lapis,Oh those darn scary,flying monkeys!They scared the peedoodle outa me too!I can't believe my little sister loves that movie!She still does!!

 

I got her a Tshirt a few years ago that said ''DEAR DOROTHY,HATE OZ,TOOK THE SHOES,FIND YOUR OWN WAY HOME,LOVE TOTO!"

 

 

[[La...]]

Excellent t-shirt, 2200! I remember seeing a t-shirt years ago that said "Toto, we're not in Kansas anymore."

[[La...]]

Hey, Shook, I remembered the America song right away. Yup, those 70s tunes are stuck in my brain. Perhaps they're taking up too much space and that's why my neurotransmitters won't normalize.

 

Anyway, I must wish you well with your Zoloft jump and, of course, with your Big C (clonazepam) taper! Fingers (and toes and other bits) will be crossed in your honour, as long as it doesn't get in the way of me trying to wobble around dizzily with my ugly metal cage friend, aka Stable Mable The Walker. Onwards and upwards! 

[[Yo...]]

Ahh 1974...I was floating in amniotic fluid and being fed through an umbilical cord. Good times. 

[[Yo...]]

Thanks for the encouragement Lapis! I've never had trouble getting off anti-depressants, but this was the first time I'd been taking one along with a Benzo, so wasn't sure what to expect. Smooth sailing, happy to report. A little more concerned about the Clonazepam taper...

[[La...]]

Shook, I'm counting on it going equally well! At least, I'm going to think positively on your behalf and hope for the best. None of us can know in advance how it will go.

 

What's your plan? Are you going to cross over to diazepam? Any idea what rate of decrease you'll follow? I guess there are lots of theories out there about what is best in terms of methods and rates of decrease. I just did the Ashton Method. I wasn't on BB, and I didn't compare notes with anyone. I just plowed my way through the milligram-by-milligram taper of diazepam after crossing over from clonazepam.

[[Yo...]]

I'm gonna do liquid titration like the first time. Start at 200ml and reduce by 1ml/day.

 

The only thing I'll do differently is properly dissolve the pill in a little alcohol (vodka is my poison), a trick I learned here. Also, instead of one evening dose, I've been taking 0.5 in the morning and again at night at exactly the same times to keep the level more constant in my body.

 

I'm not crossing over. I don't think it's necessary, and for some it even complicated their taper.

 

So, all I can do is listen to my body if it cries out. 

 

Like my signature says, the boatiness hit me towards the end. The taper had until then gone so well that I thought I'd get away with it without a scratch! Anyway, I'll be glad when it's over.