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

[[La...]]

Hey dizzy buddies. I was posting here for a bit, but haven't been on this thread for a while. Just wanted to give you all some good news and let you know that after 13 months of my boatiness returning, it's mostly cleared up. Hopefully it will happen for all of you too soon.

 

Woohoo! Thank you so much for coming back to let us know, jjrosk! That's wonderful news! That's exactly what people around here need to know! Did it leave gradually or suddenly? Is there anything that you can tell us about it that you think would be helpful?

 

I'm so happy for you! Enjoy life on solid ground.

 

It's been very gradual. From July 2017 to around November or December 2016 my dizziness and paresthesia was gradually getting worse. I was pretty terrified at the time because I didn't know where it was going to bottom out. It got to the point where it didn't matter if I was walking, standing, sitting or lying down, I always felt like I was falling. It stayed at it's worst point until maybe around March or so and then started noticing times where it was a little better and kept gradually improving until now. I mean, don't get me wrong, I'm not ready to write my success story or anything, but at least I don't feel like like I'm constantly tilting, tumbling or leaning.

 

As far as what helps... I don't think anything does. I've walked every day, and I've gradually built up an exercise routine and I do quite a bit of breathwork and relaxation practices so maybe that's had some kind of effect, but it's just so hard to know. Stress always makes it worse, that's pretty clear. My pet theory is that some kind of sustained daily movement aids in the CNS recovering, but really, I just don't know.

 

Hi jjrosk,

Thank you for fleshing out the picture. I'm really, really pleased to hear how well you're doing, and even if you're not quite "there" yet, it must be such a relief to not have to deal with the intensity of the floaty-boaty dizziness. I just wanted to check in on the dates you wrote, though. Did you mean July 2016, rather than 2017?

 

Anyway, keep up the great work, and thanks again for updating us. It's really helpful to hear how others are doing as they get better. 

[[jj...]]

Yeah, 2016, sorry!

[[La...]]

Hi Dizzy Buddies,

How is everyone today? I've been checking out some recent studies on PubMed, and I just came across this one on anti-epileptic medications and their effects after long-term use. It's called "The auditory and vestibular toxicities induced by antiepileptic drugs". Gabapentin is included in the list quoted in the abstract. I can't access the full study, so it's just a summary here, but it might be of interest to people around here.

 

https://www.ncbi.nlm.nih.gov/pubmed/28838247 

[[Ko...]]

Thanks Lapis,

 

I also read some info that said gabbapentin attached to the same neurotransmitters as Benzos. The more I read and research gabbapentin I'm definitely not going to take it. Just another medical doctor wanting to solve the problem but using another drug to try to do that. Very scary.

 

I'm trying to find a good homeopathic MD that might have some other ideas. I think I found one that's an hours drive away. I'm calling on Monday to see if he's ever treated any one with protracted withdrawal symptoms.

 

Korbe

[[La...]]

Hi Korbe,

I definitely support your decision not to take another medication right now. At this point, doctors have limited training in what we're going through, and although they may want to help, offering more medication comes with a slew of risks that many of us are not willing to take. I'm glad that -- at the very least -- the doctor acknowledged that your dizziness is likely from the benzodiazepine. That's important! I think it's helpful for the rest of us around here too, so thank you so much for sharing your experience.

 

I don't know about homeopathic MDs. Is that a medical doctor who chooses to use homeopathy rather than medication in all instances? Where I live, we have naturopaths, but I believe they use all sorts of modalities, including vitamins, herbs, manual therapies, hydrotherapy, etc.

 

By the way, if you had a chance to look at the study I just posted yesterday about anti-epileptic drugs and their possible effects on the audio and vestibular systems (i.e. hearing and balance), gabapentin is on that list. Scary stuff.

[[La...]]

Hey Dizzy Buddies!

Where is everyone? And how is everyone? Maybe no news is good news! I hope so, at least. Maybe everyone is out there getting some natural vitamin D!

 

If anyone is around, please drop in and say hello. I'm recuperating from a very unpleasant day yesterday. I had to go out, and I'm paying a high price for it. It was a dizzy day, and I'd hardly slept. The added stress of the transportation really sucked. Suffice to say, I'm moving in slo' mo' today and regretting certain things.

 

I hope everyone is doing okay. Take care, All! 

 

 

[[Yo...]]

Hi Lapis! Yeah, where's the gang?

 

I'm writing this from a hotel in Toronto. Yep! I was apprehensive the whole way on the train...fearful that hours of passive motion might worsen my boatiness. It did get worse.... I stepped down from the train and onto the deck of a rocking schooner. But it was probably from the buildup of fear, and after a night's sleep my symptoms returned to "normal" intensity. Thank goodness. I thought I'd taken a stupid risk and did myself some long term damage.... And all for Richard Dreyfuss. lol

 

Well, I met the man, and he didn't disappoint. We chatted briefly and he told me he had a bad bout of vertigo. "Bouncing from one side of the room to the other", as he explained it. He was very sympathetic and wished me luck.

 

Really glad I challenged myself and did this, cuz I was on the verge of becoming an agoraphobe. Now I'm apprehensive about the trip back. lol

 

Anyway, I wanted to drop in and say "hi". I don't have much to add to the discussion of dizziness, so I'm just here to see how you're doing....

 

Oh! I'm getting a cat! I've missed having a furry companion since my last cat passed away nearly two years ago. I've already named it "Minya", after the son of Godzilla. 

 

 

 

 

[[La...]]

SHOOK!!!!

Good for you  ! Yesterday on CBC Radio, they mentioned that event and Richard Dreyfuss, and of course, I said out loud, "Shook!" I'm SO glad to hear that you went and even got to talk to the man himself. What a coincidence that he, too, has had a bout of dizziness! It seems to be a widespread experience, although in varying degrees.

 

So, will you get dressed up and do the "fan thing"? Who/what else do you want to see there? Any plans to go up the CN Tower and try out the glass floor?!

 

I'm sure our other floaty-boaters are catching the last bits of summer while they can -- you know, sunshine and warmth! I hope they'll drop in again soon. I've had a rocky, painful run the last few days, so I've stayed fairly quiet. Lots of reading. Lots of videos on topics of interest. A bit o' news (too much of that is, well, too much).

 

Anyway, thanks for jumping in again, Shook. I was thinking about you and wondering how ye olde taper was going, so it's good to hear from you again. Take care, and enjoy Richard and the gang in T.O.!

[[La...]]

Hey Dizzy Buds,

Here's a New York Times article on dizziness from February, called "Getting Specific About Dizziness". And while it doesn't address medication-induced dizziness, it does cover some of the other common types of dizziness, as well as the difficulty in nailing down descriptions of the various dizzy sensations that people feel.

 

https://www.nytimes.com/2017/02/06/well/getting-specific-about-dizziness.html?rref=collection%2Fbyline%2Fjane-e.-brody&action=click&contentCollection=undefined&region=stream&module=stream_unit&version=latest&contentPlacement=21&pgtype=collection

[[Te...]]

Lapis, have you ever done yoga? I've been trying it, and today I'm so dizzy. Just wondering. It's hot around here, too, which also makes me dizzy. Of course the bp pills don't help.

[[La...]]

Hi Terry,

I'm SO sorry to hear you've been dizzy lately. Is that new, or recently changed? What kind of yoga are you doing? It seems to me that there are many kinds, so I'm never sure what people mean when they say that they're doing yoga. I just prefer to do regular stretching and strengthening exercises, depending on what I need and can do. Deep breathing, which seems to be part of most types of yoga, is, of course, a good thing. Keep breathing, Terry, and I will try to do the same!   

 

And what blood pressure medication do you take? Is a new prescription, or have you been taking it for awhile? The last time I talked to my doctor about medication, he admitted that almost all medications list dizziness as a possible side effect. Even if just 1% of the trial population gets a symptom, they would be required to list it as a possible side effect of a drug. Everyone metabolizes these things differently, so while one person gets dizzy from it, another feels just fine, or has some other side effect.

 

I hope it's just a passing thing, Terry, but don't give up on the yoga -- that is, if you're getting some benefit from it. Try different things to see what works for you.

 

Take good care!

[[Yo...]]

SHOOK!!!!

Good for you  ! Yesterday on CBC Radio, they mentioned that event and Richard Dreyfuss, and of course, I said out loud, "Shook!" I'm SO glad to hear that you went and even got to talk to the man himself. What a coincidence that he, too, has had a bout of dizziness! It seems to be a widespread experience, although in varying degrees.

 

So, will you get dressed up and do the "fan thing"? Who/what else do you want to see there? Any plans to go up the CN Tower and try out the glass floor?!

 

I'm sure our other floaty-boaters are catching the last bits of summer while they can -- you know, sunshine and warmth! I hope they'll drop in again soon. I've had a rocky, painful run the last few days, so I've stayed fairly quiet. Lots of reading. Lots of videos on topics of interest. A bit o' news (too much of that is, well, too much).

 

Anyway, thanks for jumping in again, Shook. I was thinking about you and wondering how ye olde taper was going, so it's good to hear from you again. Take care, and enjoy Richard and the gang in T.O.!

 

 

I was glad to get away from the Internet for a couple of days, but then I remembered Lapis from T.O., to whom I'd spoken about wanting to take this trip! 

 

I was much calmer on the ride back and even managed to fall asleep, but still disembarked with terrible, pitching boatiness. I thought, what if I've poked fate in the eye one time too many...? But it subsided again after a night's rest. (deep sigh of relief)

 

Anyway, I don't think I'll be playing guinea pig again by taking any long trips by plane, train, or automobile for awhile. And especially no boats.

 

No, I didn't play dress up. I have two "frozen shoulders" (adhesive capsulitis) and have enough trouble slipping a button shirt on and off. Getting out of a t-shirt is like watching Houdini struggle out of a straight jacket. But it was fun seeing the many people in often elaborate, homemade costumes.... I was strictly there on a mission. After completing my objective, I didn't hang around...and after long waits in line with the infernal boatiness, needed to get back to the hotel, hit the bed, and order in a pizza....

 

But life can be funny. I finally got to meet one of my childhood heroes from my favorite movie that I've loved since before I can remember, and we ended up talking about dizziness. 

 

It was at the Toronto Convention Centre, so next to the CN Tower. If I'd been in a better place, I would've checked out that glass floor! I think I was a kid the last time I went up.... Went up the Skylon in Niagara Falls a lot though to eat my favorite surf 'n' turf at the revolving restaurant! Enjoyed growing up in southern Ontario....

 

Of course I'm sorry to hear that you're still struggling badly, Lapis. Have you seen Dreyfuss in Mr. Holland's Opus? It's a feel-good movie I think you'd enjoy. And check him out if you haven't already in Close Encounters of the Third Kind, or the 1950's nostalgia flick American Graffiti. I liked him in the comedies Tin Men and What About Bob? too. Happy viewing!

 

 

[[La...]]

And what about "The Goodbye Girl"? One of my old faves! Maybe I'll look up those other flicks. I'm pretty sure I saw "Close Encounters", but it was ages ago. And I haven't seen the others. I've watched a number of nutrition-related documentaries on Netflix recently, plus two really good films ("Fences", "The Butler"). I'll see if they have the ones you mentioned.

 

Anyway, congrats on making the huge effort and facing down your fears about the travelling! Great job, Shook! I'm glad you reached your goal, as I'm sure that will bolster you a bit if you're ever wavering about your ability to get through "stuff". CBC Radio just featured another report on the event and some of the crazy costumes, and I get the idea that a good time was had by all, including our dear Shook (although they didn't mention you by name!).

 

 

[[Te...]]

Hi Terry,

I'm SO sorry to hear you've been dizzy lately. Is that new, or recently changed? What kind of yoga are you doing? It seems to me that there are many kinds, so I'm never sure what people mean when they say that they're doing yoga. I just prefer to do regular stretching and strengthening exercises, depending on what I need and can do. Deep breathing, which seems to be part of most types of yoga, is, of course, a good thing. Keep breathing, Terry, and I will try to do the same!   

 

And what blood pressure medication do you take? Is a new prescription, or have you been taking it for awhile? The last time I talked to my doctor about medication, he admitted that almost all medications list dizziness as a possible side effect. Even if just 1% of the trial population gets a symptom, they would be required to list it as a possible side effect of a drug. Everyone metabolizes these things differently, so while one person gets dizzy from it, another feels just fine, or has some other side effect.

 

I hope it's just a passing thing, Terry, but don't give up on the yoga -- that is, if you're getting some benefit from it. Try different things to see what works for you.

 

Take good care!

 

Thanks, Lapis, for responding! Over the years I've tried to do yoga and work with light weights, but the dizziness always stops me. I've done a routine since 19, so I'm not sure what it is. Just what I've learned along the way. And it's ALWAYS helped me, but not with benzo stuff thrown in. So I've had to quit numerous times. I thought, being almost 42 months out, that I would try it more on a regular basis, but again, I'm trapped by the same thing - dizziness.

 

I've been on the same bp medication, nothing has changed. Beta blockers seem to be causing the dizziness mostly. But I believe it's something with the twisting and turning while doing yoga that brings on the dizziness, too.

 

I want to continue with the yoga, but I'm scared it will raise my blood pressure, as my bp seems to react in the same manner as people having problems with their pulse going way up with exercise or whatever.

 

Oi vey!

[[La...]]

Oy vey ist mir, Terry!! I share your frustrations about these things. In my life, I've been extremely active, and having the dizziness make it nearly impossible to do something as simple as walk drives me crazy! It just feels mean. I had to change my exercises from standing to sitting, and for some, lying. You can still address many of the muscle groups, but it requires a bit of creativity and willingness to try new exercises. Still, keeping muscle function and joint movement is very important, so don't give up! If you need to get a physiotherapist's help (physical therapist for you folks!), then by all means, schedule a session. Maybe that person could tailor a plan that would be doable and comfortable, even with your dizziness.

 

Isn't the yoga supposed to lower blood pressure -- that is, with all that good, deep breathing?  It should be relaxing, not stressful, right?

 

 

[[Yo...]]

Terry38,

 

Maybe try something lighter like tai chi? Can't imagine anyone getting dizzy or a rise in bp when moving that slowly. 

 

 

Lapis,

 

Of course The Goodbye Girl, for which he won the Oscar, but didn't mention it cuz you said you'd seen it. But worth seeing again, as is Close Encounters.... Thanks for the kind words. It was a pretty big deal for me, and I have a funny photo with him to hang on the wall for encouragement to keep at it. I'd love to share it, but we're asked to guard our anonymity here. And damn it, I'm so strikingly handsome, I don't want to cause a sensation. 

[[Te...]]

It's probably something to do with working with weights more that causes anxiety. And every time I have anxiety, my bp goes up. Yes, yoga does help bp. I used to have low blood pressure. But since NSAIDS and then benzos, it's always been wonky. Well, maybe I can do the yoga without weights and then add the weights sometimes. I agree, exercise has to be done for the bones!

 

Maybe I can try the yoga every day by itself. I'll try that.

 

Tai chi would definitely help! I've often thought about it.

 

THANKS so much for your thoughts and just being there listening and reading!! 

[[Yo...]]

Terry,

 

I hope it works out for you! 

[Guest [Le...]]

Leslie,

 

I'll just continue attracting attention with some of my posts I guess. Would being gorgeous help me? 

 

 

Oh shoot - you caught me deleting an ill-advised attempt at humour! 

 

I thought I'd better not make jokes, but I am joke-y at heart, yikes.

 

Being gorgeous always helps! 

 

Please note that I spelled humour correctly, ahem.

[[La...]]

Terry, what are your concerns about working with weights? Why the spike in anxiety? Are they too heavy? Can you lighten them up a bit and then work your way up gradually, bit by bit? Are you concerned that you'll hurt yourself? Again, that's where a PT could come in. S/he could devise a plan that's more appropriate so that you feel confident, not anxious. You're right that we gals have to be concerned about our bones. I'm sure mine are at risk, but I can't walk, really. I'm hoping that my (very) light weights might be helping a bit. The other side of that is nutrition, and well, there are so many changing theories on what's required that it's nuts!

 

Let us know how it goes with the yoga, Terry. Just be good to yourself, which means keeping it up, but not stressing yourself. There must be a happy medium in there somewhere! 

 

 

[[Yo...]]

Leslie,

 

I'll just continue attracting attention with some of my posts I guess. Would being gorgeous help me? 

 

 

Oh shoot - you caught me deleting an ill-advised attempt at humour! 

 

I thought I'd better not make jokes, but I am joke-y at heart, yikes.

 

Being gorgeous always helps! 

 

Please note that I spelled humour correctly, ahem.

 

 

And you caught my reply before I could delete it. 

 

I don't want to cash in on my gorgeosity (is that a word?) just yet then. Will post my photo as a get-out-of-jail-free card if the need should arise.

 

Canada's a Commonwealth country, but the rebellious French half of me insists on spelling it "humor".... Vive la différence!

 

Ok, now back to our regularly scheduled program.... 

[[La...]]

It's "humour" en francais too, Shook, so now you have me quite confused!

 

I think I missed the details of what happened, but it's good to have a sense of humour, and someday, Shook, we'll all be able to enjoy your gorgeosity! For now, we'll just enjoy your great company. 

 

P.S. If we didn't laugh sometimes, we'd be crying (which I seem to be doing a lot of).

[[Yo...]]

lol. You have a point, Lapis! But in English, I've always favored (not favoured) the American way of dropping the "u", just to stick it to the Brits. Or maybe it's just laziness. 

 

 

Laughter is the best medicine as they say.... What comedies do you all recommend?

 

As genres go, comedy's not at the top of my list, so need some suggestions!

[[La...]]

Geez, I'm hardly laughing these days, so I need suggestions too. I don't actually remember what my laugh sounds or feels like anymore. I was going to post about that, but I saw another post on it somewhere already.

 

On the "u" thing, I had to switch over to all those non-u spellings for awhile, but I was happy to come back to this neighbourhood with our glamour and our humour and all the rest. 

 

I almost posted a link to a video which did, indeed, make me laugh when I first saw it. I watched it a bunch more times and still loved it. I'll let you hunt it down, Shook, because there's a reference to "Mr. Holland's Opus" in it. It's a very old SNL sketch, called "Germans Who Say Nice Things", and it features Steve Carell and Dana Carvey. I think I'll watch it again now, since this intense dizziness and pain has got me crying again today.Let's see if it still works for me.....

 

 

 

 

[[Te...]]

Terry, what are your concerns about working with weights? Why the spike in anxiety? Are they too heavy? Can you lighten them up a bit and then work your way up gradually, bit by bit? Are you concerned that you'll hurt yourself? Again, that's where a PT could come in. S/he could devise a plan that's more appropriate so that you feel confident, not anxious. You're right that we gals have to be concerned about our bones. I'm sure mine are at risk, but I can't walk, really. I'm hoping that my (very) light weights might be helping a bit. The other side of that is nutrition, and well, there are so many changing theories on what's required that it's nuts!

 

Let us know how it goes with the yoga, Terry. Just be good to yourself, which means keeping it up, but not stressing yourself. There must be a happy medium in there somewhere! 

 

Working with weights, I notice, causes an uptick in anxiety. Maybe they're too much. I've had the same weights for about 25 years! They're just 5 pounds for the upper body, but that's where I feel it most. The legs - I've been walking for quite awhile, so no problem there. I always eat well, have plenty of fruits and vegetables. But I'm overly sensitive. That's the problem. It could be my age, too. As you know, the benzos (especially Klonopin) can have long-lasting symptoms. I usually see former K users who have difficulty exercising, so I know it's not just me.

 

On the other hand, maybe I'll just walk tomorrow and take a day off from yoga/weights!

 

Thanks so much, Lapis! And thanks, also, Shook!