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

[[Ir...]]

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.

 

MdDs to my understanding is caused by motion - plane, train, car, boat etc. Generally consists of a rocking swaying motion. Testing is entirely normal. It tends to resolve in motion like being in a car.

 

PPPD is a type of hypervilgence syndrome. It has numerous causes: BPPV attack, previous Vestibular insult which has since compensated and also stress or a panic attack. SSRI’s used in studies show remarkable success 60% - 80% of patients showed improvement. This video explains the differences between MdDS and PPPD. It could be explained that SSRI treatment is successful because it tends to dampen the hyper active signalling in the brain which in reverse, does the opposite - coming off may cause this for some. PPPD also resolves whilst in motion.

 

Here’s a video that explains it well: https://youtu.be/lwuIi45A-Tg

 

I’ve had a diagnosis of possible Vestibular Neuronitis as there was a slight abnormality in my right ear 2 years ago but was well compensated. I’ve always questioned that diagnosis considering numerous people with anxiety, SSRI withdrawal and Benzo withdrawal have this also - me just being 5 months off my AD CT. It happened out of the blue also. Fine one minute, panic attack the next. So always never believed the damage in the ear, so it’s always confused my own understanding of what I have.

 

 

[[Ir...]]

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.

 

No, no. I think you misunderstood me. I have complete remission whilst in travel - I could drive all day long! It’s when I get out... then that’s when my symptoms return harsher than baseline. Like way worse. The degree to which it gets worse is directly correlated to the amount of time I’ve spent driving. Up to 2 hours seems fine. After that, it’s way way worse.

[[La...]]

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!

 

Hello 2200!

I'm so sorry for my tardy response. I've had a bunch of challenging days here. Anyway, it's great to hear from you and even better to know that you're having longer periods of "smooth sailing"! Wonderful! Any time off this rocky boat is a good thing. Enjoy!

 

You were wondering about what's "normal" and what's not, and I'm pretty sure dizziness is NOT normal, although anxiety is likely part of most of our lives from time to time. I would say that I'm wired in a certain way, so I might be more prone to it than the next person who is wired differently. I have a few "cool as cucumber" friends, and I just think that's how they are.

 

Does the increased exercise help? For me, it was my favourite thing to in order to keep anxiety at bay. I used to ride my bike and swim, and they both made me feel so calm and good. I miss that. My fracture foot is still healing (if you can believe it), so there's really no option but to be patient....but I'm not very good at it.

 

Take good care, 2200, and please don't be a stranger. It's great to know you're doing better! Keep it up!

[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!

 

Hello 2200!

I'm so sorry for my tardy response. I've had a bunch of challenging days here. Anyway, it's great to hear from you and even better to know that you're having longer periods of "smooth sailing"! Wonderful! Any time off this rocky boat is a good thing. Enjoy!

 

You were wondering about what's "normal" and what's not, and I'm pretty sure dizziness is NOT normal, although anxiety is likely part of most of our lives from time to time. I would say that I'm wired in a certain way, so I might be more prone to it than the next person who is wired differently. I have a few "cool as cucumber" friends, and I just think that's how they are.

 

Does the increased exercise help? For me, it was my favourite thing to in order to keep anxiety at bay. I used to ride my bike and swim, and they both made me feel so calm and good. I miss that. My fracture foot is still healing (if you can believe it), so there's really no option but to be patient....but I'm not very good at it.

 

Take good care, 2200, and please don't be a stranger. It's great to know you're doing better! Keep it up!

 

 

 

 

 

 

 

Hi Lapis!It is good to hear how you are doing.I really hope that doggone foot of your heals!It is about time,that's for sure!You may not think you are being patient,but I think you have been.I think if it was me, out of frustration,like a wolf caught in a trap, I would have chewed my foot off it it took that long to heal!

 

Seriously,I think you have handled this long time healing very well,and with all the benzo fun added to the mix.You are down right courageous!

 

You asked about exercise,and if it helps.I think I probably push myself a bit too much some days,and get very fatigued,and it does make walking tougher being so off balance.I find it does help me to sleep better.My idea of exercising is mostly chores,and walking around the yard.

We have moles really bad this year again,so they leave these big mounds of dirt all over the yard.I walk around with my dog and spread the dirt back out.I walk with a rake or hoe in case I get too off balance.

 

I think the moles make pretty good fitness instructors.I have walked almost everyday around our acre to stomp down all the holes they leave for us!My dog even gets into the action and finds the ones with moles at work underground.Dogs must have amazing hearing!

 

I also have had to pick ticks off our dog,they are very bad again this year.Be careful out there everybody!

 

Do you know that while I was typing this a spider was crawling up the front of my shirt!Geez,I hate those things!I wonder how many crawl on us when we are asleep and we don't even know it!

 

Take care Lapis,and I sure hope you get to feeling a lot better.I know we will know your success story when you come on here and say,''I rode my bike today!"

[[...]]

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.

 

No, no. I think you misunderstood me. I have complete remission whilst in travel - I could drive all day long! It’s when I get out... then that’s when my symptoms return harsher than baseline. Like way worse. The degree to which it gets worse is directly correlated to the amount of time I’ve spent driving. Up to 2 hours seems fine. After that, it’s way way worse.

 

Hey IM, yes, I misunderstood.  Still, you know, I really don't think I've seen anyone else mention this phenomenon you're experiencing.  It's all too weird.

 

2200, great to hear from you and to hear of those 1-2's, amazing, may you soon be back and reporting 0-0.5s.   

 

Just wanted to also drop these off before I close my browser and they're gone forever ... I know our BB scholar, Lap, will probably find them quite interesting.

 

Research leads to successful restoration of hearing and balance

July 18, 2013, Kansas State University

https://medicalxpress.com/news/2013-07-successful_1.html#nRlv

 

New study reveals the function of a mysterious component of the inner ear

June 28, 2018 by Kevin Jiang, Harvard Medical School

https://medicalxpress.com/news/2018-06-reveals-function-mysterious-component-ear.html

 

 

 

[Guest [...]]

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.

 

No, no. I think you misunderstood me. I have complete remission whilst in travel - I could drive all day long! It’s when I get out... then that’s when my symptoms return harsher than baseline. Like way worse. The degree to which it gets worse is directly correlated to the amount of time I’ve spent driving. Up to 2 hours seems fine. After that, it’s way way worse.

 

Hey IM, yes, I misunderstood.  Still, you know, I really don't think I've seen anyone else mention this phenomenon you're experiencing.  It's all too weird.

 

2200, great to hear from you and to hear of those 1-2's, amazing, may you soon be back and reporting 0-0.5s.   

 

Just wanted to also drop these off before I close my browser and they're gone forever ... I know our BB scholar, Lap, will probably find them quite interesting.

 

Research leads to successful restoration of hearing and balance

July 18, 2013, Kansas State University

https://medicalxpress.com/news/2013-07-successful_1.html#nRlv

 

New study reveals the function of a mysterious component of the inner ear

June 28, 2018 by Kevin Jiang, Harvard Medical School

https://medicalxpress.com/news/2018-06-reveals-function-mysterious-component-ear.html

 

 

 

 

 

 

 

Hi abcd!How are you doing?Are you still having a lot of dizziness?I hope things are getting better for you!I have missed you!

 

Thankyou for those links you posted!

 

 

[[La...]]

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!

 

Hello 2200!

I'm so sorry for my tardy response. I've had a bunch of challenging days here. Anyway, it's great to hear from you and even better to know that you're having longer periods of "smooth sailing"! Wonderful! Any time off this rocky boat is a good thing. Enjoy!

 

You were wondering about what's "normal" and what's not, and I'm pretty sure dizziness is NOT normal, although anxiety is likely part of most of our lives from time to time. I would say that I'm wired in a certain way, so I might be more prone to it than the next person who is wired differently. I have a few "cool as cucumber" friends, and I just think that's how they are.

 

Does the increased exercise help? For me, it was my favourite thing to in order to keep anxiety at bay. I used to ride my bike and swim, and they both made me feel so calm and good. I miss that. My fracture foot is still healing (if you can believe it), so there's really no option but to be patient....but I'm not very good at it.

 

Take good care, 2200, and please don't be a stranger. It's great to know you're doing better! Keep it up!

 

 

 

 

 

 

 

Hi Lapis!It is good to hear how you are doing.I really hope that doggone foot of your heals!It is about time,that's for sure!You may not think you are being patient,but I think you have been.I think if it was me, out of frustration,like a wolf caught in a trap, I would have chewed my foot off it it took that long to heal!

 

Seriously,I think you have handled this long time healing very well,and with all the benzo fun added to the mix.You are down right courageous!

 

You asked about exercise,and if it helps.I think I probably push myself a bit too much some days,and get very fatigued,and it does make walking tougher being so off balance.I find it does help me to sleep better.My idea of exercising is mostly chores,and walking around the yard.

We have moles really bad this year again,so they leave these big mounds of dirt all over the yard.I walk around with my dog and spread the dirt back out.I walk with a rake or hoe in case I get too off balance.

 

I think the moles make pretty good fitness instructors.I have walked almost everyday around our acre to stomp down all the holes they leave for us!My dog even gets into the action and finds the ones with moles at work underground.Dogs must have amazing hearing!

 

I also have had to pick ticks off our dog,they are very bad again this year.Be careful out there everybody!

 

Do you know that while I was typing this a spider was crawling up the front of my shirt!Geez,I hate those things!I wonder how many crawl on us when we are asleep and we don't even know it!

 

Take care Lapis,and I sure hope you get to feeling a lot better.I know we will know your success story when you come on here and say,''I rode my bike today!"

 

Omigosh, 2200!

What a great post! I couldn't stop smiling while reading it! Um, while I did briefly consider chewing off my foot, I later thought better of it and decided to just let it heal. It seemed less messy and a tad more prudent. 

 

I think your Fill-A-Mole-Hole fitness idea is fantastic! It sounds a bit like Whack-A-Mole, but it's less violent and hopefully a bit more relaxing. Now, if you can get your heart rate up while doing it, you'll have covered all of your bases. You could do Mole Yoga too! Have you heard of Goat Yoga? I'm sure moles could work in the same way. Just put one on your back while doing the Downward Dog (Downward Mole?!). Ah, such fun!

 

I'm sorry to hear about the ticks in your area. We've heard more and more about them -- and, of course, lyme disease -- so that's not good at all. I'm sure it has to do with increasing temperatures and the ticks moving north into Canada. Kind of scary!

 

Anyway, thanks for the good wishes, 2200. I dream about riding my bike and, really, just walking around and feeling normal. It's hard to imagine it, but at least I'm still getting some 6s and 7s. I had a terrible run of 8s and 9s last month, and I'm sure the very high levels of stress I've been under recently played a role. I hardly slept too. NOT fun. We'll just forget all of that and try to move forward.

[[Aj...]]

Dose anyone feel like they are concussed?

 

Sort of not in body, stumbling around, completely detached and disorientated, can’t see properly can’t work legs properly.

 

I’m trying to work out if this is a form of vertigo.

[[La...]]

Hi Ajusta,

"Vertigo" usually refers to a sense of spinning -- either you or the room -- and I can't say I've ever had that with benzo withdrawal. Is that what you're feeling? Mine is "disequilibrium", like being on a boat in very wavy waters or caught in a current in the ocean. Benzodiazepines are known to adversely affect the vestibular system, so balance problems are very common while on the meds, when coming off them and during withdrawal.

 

I've never been concussed, thankfully, so I don't know what that's like. Your symptoms sound very much like benzo-related issues, but if you're unsure and you haven't had things checked out medically, then by all means, you should go ahead and do so.

[[...]]

Dose anyone feel like they are concussed?

 

Sort of not in body, stumbling around, completely detached and disorientated, can’t see properly can’t work legs properly.

 

I’m trying to work out if this is a form of vertigo.

 

Hi Ajusta, I'm wondering if this is a constant for you or whether it comes in spells?  Do you feel very lightheaded when it happens?  Or depersonalization perhaps?  I remember discussing similar with 2200 some time ago, here, maybe you can relate.  You can start reading from here:

 

http://www.benzobuddies.org/forum/index.php?topic=128947.msg2363719#msg2363719

[[sk...]]

I woke up Wednesday morning and while laying still in bed all of a sudden it felt like the bed fell out from under.  Everything was spinning.  I was like that for 3 days.  I woke up on Saturday and I felt fine, but last night I woke up at about 1 am and went to the bathroom and when I came back and laid down everything started spinning again and hasn't stopped yet.  Has anyone had this problem?  I'm 41 months into withdrawal and haven't had this symptom ever.

[[La...]]

Hi skatootle,

If you've got spinning and it's a new symptom, I think it's best to get it checked out. It sounds like it could be a certain kind of vertigo, called Benign Paroxysmal Positional Vertigo. Please look it up and see if the symptoms sound like what you're experiencing. If so, I'd be heading to the doctor to get some treatment for that. It's highly treatable, by the way, so there's good news on that.

 

Really, if anyone has a sudden onset of new dizziness, it's always best to get it checked. Dizziness can be caused by many things.

 

Take care and please let us know how it goes, okay?

[[...]]

What Lapis says.   

Also, I'd take a good look at the side effects of any meds you may presently be on.  Any new meds added?  Any recent dose changes, etc.

[[bl...]]

skatootle: I had this on Memorial day and the next day. Felt "off and dizzy" for about 9 days afterwards but since ok. Dr wants me to have a hearing test. Today I feel a sort of warm sensation in my head and a bit woozy but not as scary as that first vertigo. scared the crap out of me.

[[La...]]

Yes, if it's BPPV, then apparently, it can be extremely debilitating. It can be associated with head movements, and it may involve vomiting too. The treatment is called the Epley Maneuver, and it involves moving the crystals in the semicircular canals back into place by moving the head in a very specific way. Sometimes people do home exercises to follow up as well.

 

If only there was a similar treatment for benzo dizziness!

[[bl...]]

Touche, Lapis!

[[La...]]

There's another symptom that's often associated with BPPV, and that's nystagmus, a movement pattern in the eyes. There's some useful info here:

 

https://vestibular.org/understanding-vestibular-disorders/types-vestibular-disorders/benign-paroxysmal-positional-vertigo 

[[Aj...]]

Dose anyone feel like they are concussed?

 

Sort of not in body, stumbling around, completely detached and disorientated, can’t see properly can’t work legs properly.

 

I’m trying to work out if this is a form of vertigo.

 

Hi Ajusta, I'm wondering if this is a constant for you or whether it comes in spells?  Do you feel very lightheaded when it happens?  Or depersonalization perhaps?  I remember discussing similar with 2200 some time ago, here, maybe you can relate.  You can start reading from here:

 

http://www.benzobuddies.org/forum/index.php?topic=128947.msg2363719#msg2363719

 

 

Thanks!

 

No it’s more like heavy headed and severe malaise combined with the concussed feeling. A bit like being very drunk and very ill at the same time but with muscles feeling too bouncy and uncontrolable so legs won’t take steps properly.

[[Aj...]]

Hi Ajusta,

"Vertigo" usually refers to a sense of spinning -- either you or the room -- and I can't say I've ever had that with benzo withdrawal. Is that what you're feeling? Mine is "disequilibrium", like being on a boat in very wavy waters or caught in a current in the ocean. Benzodiazepines are known to adversely affect the vestibular system, so balance problems are very common while on the meds, when coming off them and during withdrawal.

 

I've never been concussed, thankfully, so I don't know what that's like. Your symptoms sound very much like benzo-related issues, but if you're unsure and you haven't had things checked out medically, then by all means, you should go ahead and do so.

 

No it’s not the spinning vertigo. I had that for years from viral labyrinthitis. Got it recently when made a cut in dose but only when changing position and then it cleared up again thank god.

[[La...]]

So, you're pretty sure this feeling is from the benzo, then? It sounds like it to me, but I always think it's good to get it checked out, if you're unsure. Dizziness can be caused by so many things, but it can be hard to diagnose.

[[Fi...]]

Just started having this floaty boaty feeling.  For about the past month.  It’s like I’m on water.  And, things tilt and feel like I’m being pulled forwards and backwards.  No spinning.  But, like stumbling around like a drunk. 

 

What do people do to cope?  This is new to me.  I have a neurologist appt scheduled.

 

 

[[La...]]

Hi Fighting4Me,

It does sound like benzo dizziness to me. Have you checked out the first page of this thread? I listed a number of the descriptive terms that BBs have used to describe their sensations of disequilibrium, and yours fit right in there.

 

It's a matter of taking one day at a time, and trying to figure out how to stay calm and UPRIGHT! No falling, please! For me, some days are less dizzy than others, so those days give me hope and help me cope with the dizzier days.

 

It's important to stay as strong and flexible as you can, despite the symptoms. If you can do exercises -- whether in sitting, standing or lying -- or perhaps walking on a treadmill or riding a stationary bike, then you can keep up your strength. The urge is to just stop everything, but that will make it harder to function. Be gentle with yourself, but don't go to bed, or you'll just get weak and be more vulnerable. If you need to use a cane or walker, by all means, do so. Falling is just not an option.

 

Let us know how your neurology appt goes. In my case, I got everything checked out so that I could be sure it wasn't anything else. After a number of specialist appointments, it became clear that my floaty-boaty dizziness was from the meds.

[[Fi...]]

Hi Fighting4Me,

It does sound like benzo dizziness to me. Have you checked out the first page of this thread? I listed a number of the descriptive terms that BBs have used to describe their sensations of disequilibrium, and yours fit right in there.

 

It's a matter of taking one day at a time, and trying to figure out how to stay calm and UPRIGHT! No falling, please! For me, some days are less dizzy than others, so those days give me hope and help me cope with the dizzier days.

 

It's important to stay as strong and flexible as you can, despite the symptoms. If you can do exercises -- whether in sitting, standing or lying -- or perhaps walking on a treadmill or riding a stationary bike, then you can keep up your strength. The urge is to just stop everything, but that will make it harder to function. Be gentle with yourself, but don't go to bed, or you'll just get weak and be more vulnerable. If you need to use a cane or walker, by all means, do so. Falling is just not an option.

 

Let us know how your neurology appt goes. In my case, I got everything checked out so that I could be sure it wasn't anything else. After a number of specialist appointments, it became clear that my floaty-boaty dizziness was from the meds.

 

Thank you for the info Lapis.  I have been very anchored to my bed since this started. Freaks me out!!!

How long have you been dealing with it?

[[La...]]

A looong time, Fighting4Me. But then again, I didn't just take benzos (two different kinds). I also took SSRIs, which likely exacerbated the whole thing. If I'd known the dizziness was caused by the meds earlier on, I would have started to get off them much sooner. It took two years for me to finally figure out what the heck was going on. I stumbled onto a bunch of BB posts where people were describing their dizziness, and I just couldn't believe it. They all had the same symptoms and they were all taking -- or trying to get off -- benzodiazepines. What an eyeopener!

[[Fi...]]

A looong time, Fighting4Me. But then again, I didn't just take benzos (two different kinds). I also took SSRIs, which likely exacerbated the whole thing. If I'd known the dizziness was caused by the meds earlier on, I would have started to get off them much sooner. It took two years for me to finally figure out what the heck was going on. I stumbled onto a bunch of BB posts where people were describing their dizziness, and I just couldn't believe it. They all had the same symptoms and they were all taking -- or trying to get off -- benzodiazepines. What an eyeopener!

 

I went on a short walk today in the neighborhood the Floaty Boaty wasn’t too bad.  When I got home and sat down it kicked in. 

 

How did you cope?