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

[[bl...]]

Thank you Lapis and Thomas: I’ll call dr tomorrow. Really appreciate responses! Glad to hear it passed and hope u r doing okay.

[[Th...]]

Thank you Lapis and Thomas: I’ll call dr tomorrow. Really appreciate responses! Glad to hear it passed and hope u r doing okay.

 

I think GPs knows BPPV and can diagnose it but ear doctors are the specialiats. They also have special glasses available to observe nystagmus movements causing spinning.

[[La...]]

Have you guys been dizzy or boaty the whole time or did it hit at some point. I'm 18 months and have had gravity pulling me down and dizziness for a month now.

 

Hi addictionfairy,

My dizziness has been with me the whole time, including when I was taking the medications (both benzos and SSRIs). If you've been off for 18 months, and the dizziness didn't start until 17 months later, it's hard to say what's causing it. Best to get it checked out, since dizziness can have many causes. It's one of the most common symptoms that people seek help for, e.g. at the emergency department or at their doctor's office.

[[Th...]]

Thank you so much I appreciate it. I've seen numerous drs and they all can't find anything.

[[La...]]

Okay, well that's good news. It can be a diagnosis by elimination, i.e. once you've eliminated all of the other possibilities, then all arrows point to one thing......Yes, the meds. I did a lot of testing, including hearing, vestibular, vision, neurology, etc. I had a CT scan of my head too.

 

Anyway, let us know how it goes, and in the meantime, I'll keep my fingers crossed for you that all is well -- or well-ish, in this case!

[[Ko...]]

Hi to all Dizzy Buds,

 

Sorry all of you are still struggling with dizziness or boatiness.  I haven’t posted for a couple of months

and wanted to check in to let you know I’m still here and still boaty. I’ve now been off for 55 months.

Boatiness or disequilibrium is my worse symptom. I have it 24/7.  On a scale of 1 to 10 my boatiness is usually around 6 but sometimes it gets worse and shows up as a 9. On those days I rock even when sitting, but on 5 or 6 days I don’t rock.  I do think I am getting better, but it’s in minuscule increments.  I hope someday I’ll wake up and it will be gone.  I still have burning skin issues too, but the Quell pain device has helped that a great deal.  Also still suffering from sleep problems. Mostly can’t go to sleep until 4 or 5 am then sleep until 1 or 2pm waking every two hrs. I think I need to see a sleep specialist.  It’s been a long struggle and I try to stay positive. I’m fortunate in that I have an

understanding family and a few supportive friends.

 

Thanks again Lapis for keeping this group going and keeping us informed. I hope your foot is better and you’re seeing some positive improvement in your boatiness.

 

Korbe

[[La...]]

Hi Korbe,

It's good to hear from you! Thanks for coming back to say hello. I'm so sorry to hear that you're still boaty, but in my books, a 6 is pretty darn good, so I'm glad you're having more of those than the 9s. With your sleep issues, do you have any idea what the factors are? Are you taking other meds that might be affecting your sleep? A sleep specialist is probably a good idea, as that person could work with you to look at the whole picture and see what needs to be addressed.

 

Thanks for the good wishes about my foot and dizziness, Korbe! My fracture is healing, albeit slowly. I'll have another Xray soon, so we'll see what the doc says. I'm pretty sure this will be the last one, since the callus was well-formed as of the last Xray, and I've been doing the assigned exercises for the soft tissue for a few months now. I was told that these fractures can take awhile, so I guess I can't expect any miracles. As it is, I put all my weight through that foot because the other foot is way more painful. As for my boatiness, it's still quite intense much of the time, so that's the major reason for the slow healing. I'd be walking all day if I weren't dizzy! I just want to be the active person I was before.

 

Anyway, please take good care and stay in touch. 

[[ca...]]

I'm so sorry to read some stories on here about the floating, boating , dizzy feeling sxs.

 

I'm down to 1.8mg V and starting to feel the floaty boaty feeling and tinnitus so I can relate.

 

I feel pretty good other than these sxs... hoping they will get better

 

[[La...]]

Hi caltn,

Tinnitus and floaty boaty dizziness are really common symptoms, so it's not unusual that you're getting them during your taper. I'm really hoping they won't be too bad and won't hang around too long. Just try to stay as physically strong and functional as you can, but be safe. If you're able to do any kind of exercise -- in sitting, standing or lying -- then that's great. A stationary bike or treadmill can be a good option too, if you can't walk around the neighbourhood.

 

Take good care and keep up the good work with your taper! It looks like you're getting close to the end. 

[[ca...]]

Hi caltn,

Tinnitus and floaty boaty dizziness are really common symptoms, so it's not unusual that you're getting them during your taper. I'm really hoping they won't be too bad and won't hang around too long. Just try to stay as physically strong and functional as you can, but be safe. If you're able to do any kind of exercise -- in sitting, standing or lying -- then that's great. A stationary bike or treadmill can be a good option too, if you can't walk around the neighbourhood.

 

Take good care and keep up the good work with your taper! It looks like you're getting close to the end. 

 

I get plenty of exercise at work but it's getting harder to stay on my feet so I have to rest, generally at noon my withdrawals sxs hit me, sometimes they're intense but I soldier on.

My feet also are starting to cramp in my arch so I stretch my calves twice a day and that seems to help.

Thanks for your  encouragement.

[[La...]]

Well, it's good that you can keep working through this and that you're able to stay active. Sounds like you have enough flexibility there to rest when you need to. 

[[Ir...]]

Hi everyone.

 

Anyone’s floaty boat get worse with prolonged travel?

 

I can be pretty normal all day but then I travel 2 hours and I can then feel it

[[La...]]

Hi IrishMonkey!

How have you been? It's been a long time since we've seen you around these parts! Any updates? I hope you're doing okay.

 

As far as travel goes, I'm really not doing much of it. The most I do is 20 minutes in a car, and during that time, I don't really feel the dizziness, but if it's a dizzy day for me, then it stays a dizzy day. If it's a less dizzy day, then it generally stays that way after the trip.

 

Hopefully, others wills chime in here as well.

 

Take care!

[[...]]

Hi everyone.

 

Anyone’s floaty boat get worse with prolonged travel?

 

I can be pretty normal all day but then I travel 2 hours and I can then feel it

 

 

Hey IrishMonkey, it's been about four months since we heard from you.  Are you now saying your rocking/swaying has abated to the point where you're "pretty normal all day"?  This is a big deal!!!  Please come back and elaborate!

[[Sc...]]

Do some people fee like they only get dizzy because of their eyes? I have a little vision instability still which gets me off balance from time to time. Typically either when stressed or around a lot of people. I also feel this way outside when it begins to get darker, I begin to feel almost like I can’t see at all and feel out of sorts in the dark.

[[Ji...]]

Hi dizzies

 

I wonder if "eyes floaters" or "eyes clouds" or "flying flies" (myodesopsia) are part of the symptoms this group deals with?

 

Thanks.

[[La...]]

Hi Jim Hawk and Scrappy,

There are three things that must be in sync for normal balance -- vision, the vestibular system and proprioception. If one of those things isn't functioning properly, then balance can be off. Have either of you had your vision checked by an optometrist or opthalmologist? It would be a worthwhile thing to do if you're concerned about your vision. For sure, benzo withdrawal can include visual issues, but in my opinion, it's better to be safe than sorry if you're not quite sure what's up with your vision.

 

I had mine thoroughly tested when I became dizzy, as per the instructions of the ENT I first saw. Everything check out just fine. I've continued to have regular check-ups, and it's still fine.

 

Having said that, I know that many dizzy people are affected by overly busy situations, e.g. large stores, intense lighting, etc. It may not be just us, though. Those atmospheres can bother people who aren't dizzy.

[[Ir...]]

Hi everyone.

 

Anyone’s floaty boat get worse with prolonged travel?

 

I can be pretty normal all day but then I travel 2 hours and I can then feel it

 

 

Hey IrishMonkey, it's been about four months since we heard from you.  Are you now saying your rocking/swaying has abated to the point where you're "pretty normal all day"?  This is a big deal!!!  Please come back and elaborate!

 

No I still have it. Maybe I’m more use to it now? It does fluctuate in intensity, so sometimes I’m okay with it. My walking trampoline or rocking swaying isn’t normally there but I usually have some form of motion.

 

I just can’t travel anymore than 3 hours in the car or it really gets bad. I’ve been told by a specialist it sounds like PPPD - as that’s rocking swaying and usually absent when laying down.

[[La...]]

Hi IrishMonkey,

Can you please share some info with us about your diagnosis of PPPD? I've seen that before online. Did they discuss a cause or a treatment, or did they just give you the diagnosis/label? It looks like a very subjective diagnosis, as it doesn't seem to be associated with any particular objective test. The description I found online suggests SSRIs as a treatment, which would have me howling! Dizziness is a common side effect of that medication, as I'm sure you know.

 

Anyway, I'm curious as to what your experience was, IrishMonkey, so please do share it.

 

 

[[...]]

Sorry to hear it's still with you, IM, here's hoping the fluctuations keep moving in the right direction eventually coming to a complete standstill.  That's my ultimate wish for all of us.

 

Regarding your question, I don't believe I've seen any reports of it being worsened by travel, in fact it seems the opposite, that travel and being in motion counteracts the swaying for many of us.  To me, this PPPD sounds like just another wastebasket diagnosis just for the sake of giving a name to something they're clueless about.  But it certainly would be good if it leads to something worthwhile, we can always hope.

[Guest [Le...]]

Interesting about PPPD – sounds similar to POTS, but without the huge heart rate increase.

 

  POTS – A doctor said it was all in her head

 

[[La...]]

Hi LeslieAsh,

I believe PPPD is mostly about balance, while POTS appears to have many other non-balance-related issues. With PPPD, the articles I've seen don't seem to provide much substance in the way of diagnosis and treatment. It's not clear how it differs from Mal de Debarquement too, which is mostly associated with boat, plane and car travel, yet somehow can also apply to non-travel-related dizziness issues. Very murky. I will soon post a related medical journal article that I came across on this very topic yesterday.

 

A number of years ago, I came across an article -- NYTimes, I believe -- saying that hearing and balance were fields of study that needed more attention. The fact is that many of us are extremely dizzy yet the available testing doesn't seem to reflect what we're feeling. A neurologist I saw years ago said, "We don't have the means to test balance to the degree that we would like at the present time." Yes, clearly, that's true. It helped me understand why I could have "normal" test results yet feel like I'm in the middle of a violent ocean on a stormy day. "Normal"? I don't think so. My physiotherapists can feel how rigid my foot and leg muscles are as a result of trying not to fall when walking. It's excruciating. They can "feel" my balance problem via my muscles, but the testing can't properly reflect it.

 

I do hope more research takes place. It would be good to have solid answers.

 

 

[[...]]

Hi LeslieAsh,

I believe PPPD is mostly about balance, while POTS appears to have many other non-balance-related issues. With PPPD, the articles I've seen don't seem to provide much substance in the way of diagnosis and treatment. It's not clear how it differs from Mal de Debarquement too, which is mostly associated with boat, plane and car travel, yet somehow can also apply to non-travel-related dizziness issues. Very murky. I will soon post a related medical journal article that I came across on this very topic yesterday.

 

A number of years ago, I came across an article -- NYTimes, I believe -- saying that hearing and balance were fields of study that needed more attention. The fact is that many of us are extremely dizzy yet the available testing doesn't seem to reflect what we're feeling. A neurologist I saw years ago said, "We don't have the means to test balance to the degree that we would like at the present time." Yes, clearly, that's true. It helped me understand why I could have "normal" test results yet feel like I'm in the middle of a violent ocean on a stormy day. "Normal"? I don't think so. My physiotherapists can feel how rigid my foot and leg muscles are as a result of trying not to fall when walking. It's excruciating. They can "feel" my balance problem via my muscles, but the testing can't properly reflect it.

 

I do hope more research takes place. It would be good to have solid answers.

 

Yes, let's tweak Mal de Debarquement which is all about motion to "spontaneous" Mal de Debarquement so we at least have a label to dump on more people, and now it seems PPPD may be replacing that, or complementing it, who knows?  Doubtful it'll be of any help to any of us.  Might assist for disability purposes though.

[[La...]]

True, abcd. To me, it's still all about having taken medications that adversely affect balance. Benzodiazepines are vestibular suppressants and adversely affect GABA. SSRIs and SNRIs can cause dizziness due to their effects on other neurotransmitters (serotonin, dopamine, etc.) that are involved in balance. Other psychiatric medications can have similar adverse effects. Taken long-term, they effects can be more problematic.

 

Makes sense, doesn't it?

 

 

[Guest [...]]

Hi Lapis and everybody!I wanted to check in and give an update.I am now at 50 months off.I have had some good days/bad days with as one BB mentioned,a rapid cycling of symptoms every day.It is so weird!I can start out the morning very dizzy,an hour later it is light,then the same with anxiety and the brain fog,feeling like it's hard to breathe,that jittery can't calm down feeling,all of it,cycles so rapidly from bad to good,it freaks me out!

 

I find that my baseline is improving though.I have been getting longer periods of smoother sailing when I am feeling better,and the dizziness when it is not jumping around,settles to about a 1-2!That gives me the most encouragement!As you know dizziness has been my worst symptom next to anxiety.

I still have times in the day when it cycles up,like for some weird reason,it gets worse after dinner when I try and walk around outside to get some exercise,then fades more towards evening.

 

This stuff is bazaar!

 

I still feel like my central nervous system is in over drive,as when something challenging happens,and I feel like I won't be able to cope.I get concerned something bad could happen,and I will be a nervous wreck and won't be able to handle it.

Surprisingly a few things have happened that though it did ramp up my nerves,I was able to deal with it,so I saw improvement there.I remember even a year ago how I couldn't even handle a hectic phone call or knowing the appliance repair guy was coming,etc.

 

 

Anyway,sorry to go on and on!I do because I know so many are as far out as I am(OVER 4 YEARS),and might be wondering if this stuff is normal,and for me,it is a big YES!

 

But,as weird as it sounds,it is rapidly cycling by the hour most days.

 

Now I'm trying to get more exercise when I feel like I can do it,as I have been so exercise intolerant for sooo long!I get the breathing trouble sometimes and with the dizziness,it feels like I got so out of shape not being able to exercise as must,as just walking was a super hard challenge most days.

 

How is everyone else doing?Anybody stop getting the dizziness altogether?

 

How are you doing Lapis,how is your foot?

 

Sorry I haven't been on as much.I still think about you guys and pray you are healing quickly!