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

[[La...]]

Drew, I just noticed your avatar! Floating, boating and bobbing! Nice one. It's good to have a sense of humour! I'm afraid I've lost mine today. Pretty rough day on the go here.

 

Anyway, it sounds like you guys are doing all the right things. I'd have to agree that anxiety and dizziness go together, but if it were just anxiety causing the boatiness, I doubt any us would be struggling so much. My boatiness is there when I'm sitting, standing or trying to walk. It's there when I'm calm. It's there when I'm anxious.

 

I have to applaud anyone who's actively working on keep their anxiety at bay despite these symptoms. It's a huge feat! It's a skill that we all have to have since, well, as we all know, things can get pretty hairy when you're a human being. 

[[Lo...]]

LovingMother-I started to do a new exercise to help with balance. I wanted to share it with every fabulous person on this group.

 

Stand in front of your dresser so you can hold on. Lift one leg and bend it back. Then close your eyes and let go of the dresser. Try to balance yourself for about 10-15 seconds. Then switch legs. Repeat each leg 10 times....Ashton mentioned this exercise and she feels it works. I just started it 3 days ago.

 

I just walked on my treadmill this AM for 4.04 miles on an incline of 5.5. I have never done that before and there is always a first:)

 

HOPING EVERYONE IS HAVING A GREAT DAY!!

FRAN:)

 

Thanks! I learned this in PT. I do it in the kitchen. I do it with my eyes open and closed. But maybe I need to do it daily. Thanks for the reminder!

 

Drew...I'm with Lapis. I can be relaxed and my balance is still off  :'( it's just a dreaded symptom.

[[Al...]]

I had a little rockiness when I was in my kitchen, sitting at my kitchen table. As soon as I left my house it abated. I'm thinking there is dust in my kitchen and that is what could be attributing to my rockiness. Allergies and dust can give you rockiness....Years ago I had rockiness only in my kitchen...any suggestions??

Fran:)

[[Lo...]]

I had a little rockiness when I was in my kitchen, sitting at my kitchen table. As soon as I left my house it abated. I'm thinking there is dust in my kitchen and that is what could be attributing to my rockiness. Allergies and dust can give you rockiness....Years ago I had rockiness only in my kitchen...any suggestions??

Fran:)

 

Have you checked for mold Fran??? My kinesiologist said that could set it off too. An air purifier might help?

[[La...]]

Hey Fran, my guess is that it was just a coincidence. This type of dizziness, i.e. that caused by the benzo, doesn't seem to be provoked by specific movements or places from what I can tell. Others can weigh in here too, but it really does seem to have a life of its own. That said, if there are specific allergens that affect you, it makes sense to get rid of them.

[[Lo...]]

When I was reading through the Ashton manual it said balance issues can take at least year before resolving  a few symptoms said at least year...I'm just going try to push gently forward (even though my job is giving me the blues). It's just a very hard symptom.

[[La...]]

Oh LovingMother, I'm with you there. It's a really, really hard symptom. It's my hope that someday there will be a way to get rid of this symptom quickly and easily. It's debilitating.

 

I think of you often with your son, and I know it must be so hard to keep chugging along with regular things. I think of everyone here, actually, and I know I'm not alone, but still, it feels pretty isolating to be going through this.

[[Al...]]

LovingMother-the balance thing is a big drag but try not to let it bring you down. I find all of the symptoms annoying but I keep telling myself they will abate. The one symptom I am dealing with for the past three weeks is that my hair is shedding. I just washed my hair and I can't fathom how much hair came out. I'm going to end up bald. Has anyone experienced this? I rather have any other symptom than going bald!

Fran

[[La...]]

I had hair loss, Fran, but it stopped after awhile. I"m sure yours will too, and then it'll grow back. For me, it was annoying but nothing like the dizziness, which is completely debilitating on bad days.

[[Al...]]

Lapis2 I'm so sorry to hear this about the dizziness.... I am sure it's very debilitating. Do you remember how long the shedding lasted for? About 75 hairs just fell out while I washed it and blew it but who is counting.

Fran

[[pr...]]

i'm on my 5th night or absolutely no sleep at all. i fell alsleep after 5am and slept until 5:36am. i don't know how i'm holding up and scared to even lay down tonight. anyway, i wanted to share that my undulating (boaty) symptoms promptly changes at 3am to even more severe and then let's up a little after 4am. the burning waves down my legs also become more severe promptly at 3am.

 

the brain definitely has cycles. i just wish one of the cycles would be no more head/brain/ear floaty boat symptoms.

 

Fran, that's an adorable picture of Casey.

[[Al...]]

Pretty-Casey and I are sending you wishes and ONLY good vibes for sleep tonight. Maybe you need a little fluffy dog to cuddle up to? Interesting that dogs never have insomnia...lucky them.

 

Thinking of you Pretty!!

XO Fran

[[La...]]

Prettydaisys, that's an interesting observation about the brain and its cycles. I keep wondering what happens overnight, for instance, if I've had a less dizzy day but wake up much dizzier the next day. What happens? I'm not sure if others have this sort of thing going on, but prettydaisys, I've got that middle-of-the-night change going on as well.

[[mo...]]

i'm on my 5th night or absolutely no sleep at all. i fell alsleep after 5am and slept until 5:36am. i don't know how i'm holding up and scared to even lay down tonight. anyway, i wanted to share that my undulating (boaty) symptoms promptly changes at 3am to even more severe and then let's up a little after 4am. the burning waves down my legs also become more severe promptlly at 3am.

 

the brain definitely has cycles. i just wish one of the cycles would be no more head/brain/ear floaty boat symptoms.

 

Fran, that's an adorable picture of Casey.

 

Hi prettydaisies,

 

I just posted a couple of links on another thread to youtube that REALLY help me sleep...just in case you want to give it a try here is a copy of the post:

 

I start with this:

https://www.youtube.com/watch?v=6tF14GnCJqk&index=3&list=PLz21meG_6NQ2rfn6NlM15v9HORNwtSLiJ (kind of new agey and big on promises, but it puts me to sleep nearly every time!)

 

and then I have my you tube channel set to follow the above immediately with this:

(no words, but runs 8 hours long and something about the music puts me back to sleep if I awaken)

 

I will warn you that both youtube programs have ads at the start of the program, however, somehow my husband set my playlist up so there are NO ads (I don't know how to do this but it probably tells you somewhere) so I don't get jarred awake between tapes. One thing I have noticed is that it is almost like "biofeedback"...I am so accustomed to falling asleep to these that when I hear them, my body responds most of the time by falling asleep!

 

Wishing you "sweet dreams",

 

Mo

[[Lo...]]

Oh LovingMother, I'm with you there. It's a really, really hard symptom. It's my hope that someday there will be a way to get rid of this symptom quickly and easily. It's debilitating.

 

I think of you often with your son, and I know it must be so hard to keep chugging along with regular things. I think of everyone here, actually, and I know I'm not alone, but still, it feels pretty isolating to be going through this.

 

Thank you for thinking of me. It is quite debilitating. I just keep chugging...that's all I can do.

 

Fran I will pray the hair loss stops.

 

Benzos need to not be prescribed to anyone. Look at the damage it causes  :'(

[[Al...]]

LovingMother-Thank you!! I had such a great day yesterday and then I got a wave of anxiety after I washed my hair and I saw how much hair came out. It was enough to give anyone anxiety. I made my son dinner and cleaned the kitchen through my wave. I just listened to some mediation oasis and the wave passed. Now it's time for ice cream:). You've got to enjoy your life for we only have one life to live.

Fran:)

[[dr...]]

My boatiness seems worse in the day and gets better towards evening.  Anyone else have that?

[[Co...]]

Hi dizzy buds...weighing in on the chicken/egg discussion regarding the relationship...or lack thereof of between anxiety and dizziness. My thoughts....yes and yes...lol. I have mostly the undulating sense of motion...more pronounced after stopping physical momentum ( when the car stops moving, when I stop exercising). I also get less frequent episodes of more typical ' dizziness' like I am going to fall to the side or am involuntarily leaning or being pulled to the side. This can sometimes be precipitated by leaning my head to the left side while reading or looking upward too fast. I think the undulating sensation is a true w/d sx and seems to be entwined with d/r and cog fog.. it all seems to be one sx most of the time. It doesn't always trigger anxiety, but a strong anxiety episode, mini panic or stress situation ( like going to the doctor) ALWAYS triggers the head pressure, d/r and thick disorienting cog fog....So for me, undulating sensation can happen without anxiety. Free standing anxiety and panic or anticipatory stress will 98% of the time trigger the undulating ( and sometimes frank dizziness) and the sibling sx of cog fog, big head pressure etc...so for me it is part of the panic....When it is not part of a panic or anxiety I can manage it pretty well. I think it is the d/r that comes with it that makes navigating difficult.

......The true dizziness that makes me feel like I am falling or leaning is always sudden and precedes anxiety or panic, although sometimes my sense of it is that it happens simultaneously. . but I have had enough of them now to recognize that the dizziness hits a split second before the sudden disequalibrium.

.....Do I sound obsessed enough?...Both of these motion disturbances make me crazy and I have stopped trying to figure out where they come from...it is a never ending looping internal conversation. I would be happy to learn how to live with them.. just when I think maybe I am getting free of it , it lands on me again. The undulating sensation is much more doable.  I hope this makes sense to somebody....what a ramble.  Lapis, you are right..  this one is hard.  Wishing you all some breaks from this....coop

[[pr...]]

i'm on my 5th night or absolutely no sleep at all. i fell alsleep after 5am and slept until 5:36am. i don't know how i'm holding up and scared to even lay down tonight. anyway, i wanted to share that my undulating (boaty) symptoms promptly changes at 3am to even more severe and then let's up a little after 4am. the burning waves down my legs also become more severe promptlly at 3am.

 

the brain definitely has cycles. i just wish one of the cycles would be no more head/brain/ear floaty boat symptoms.

 

Fran, that's an adorable picture of Casey.

 

Hi prettydaisies,

 

I just posted a couple of links on another thread to youtube that REALLY help me sleep...just in case you want to give it a try here is a copy of the post:

 

I start with this:

https://www.youtube.com/watch?v=6tF14GnCJqk&index=3&list=PLz21meG_6NQ2rfn6NlM15v9HORNwtSLiJ (kind of new agey and big on promises, but it puts me to sleep nearly every time!)

 

and then I have my you tube channel set to follow the above immediately with this:

(no words, but runs 8 hours long and something about the music puts me back to sleep if I awaken)

 

I will warn you that both youtube programs have ads at the start of the program, however, somehow my husband set my playlist up so there are NO ads (I don't know how to do this but it probably tells you somewhere) so I don't get jarred awake between tapes. One thing I have noticed is that it is almost like "biofeedback"...I am so accustomed to falling asleep to these that when I hear them, my body responds most of the time by falling asleep!

 

Wishing you "sweet dreams",

 

Mo

 

 

thank you so much Mo, will definitely check both of them out!

[[Co...]]

AF.  falling hair is a common w/d sx...mine fell out in patches last summer. It has grown back now. It took about 8/9 months for it to come back all the way. It came back white but I am 65 so that was bound to happen...It bothered me a lot ....sort of like the last insult...coop

[[Al...]]

Cooperten thanks for getting back to me. How long did the hair fall out for? Glad to hear that your hair came back. My hair is also breaking a double whammy.

Fran

 

[[La...]]

Hi dizzy buds...weighing in on the chicken/egg discussion regarding the relationship...or lack thereof of between anxiety and dizziness. My thoughts....yes and yes...lol. I have mostly the undulating sense of motion...more pronounced after stopping physical momentum ( when the car stops moving, when I stop exercising). I also get less frequent episodes of more typical ' dizziness' like I am going to fall to the side or am involuntarily leaning or being pulled to the side. This can sometimes be precipitated by leaning my head to the left side while reading or looking upward too fast. I think the undulating sensation is a true w/d sx and seems to be entwined with d/r and cog fog.. it all seems to be one sx most of the time. It doesn't always trigger anxiety, but a strong anxiety episode, mini panic or stress situation ( like going to the doctor) ALWAYS triggers the head pressure, d/r and thick disorienting cog fog....So for me, undulating sensation can happen without anxiety. Free standing anxiety and panic or anticipatory stress will 98% of the time trigger the undulating ( and sometimes frank dizziness) and the sibling sx of cog fog, big head pressure etc...so for me it is part of the panic....When it is not part of a panic or anxiety I can manage it pretty well. I think it is the d/r that comes with it that makes navigating difficult.

......The true dizziness that makes me feel like I am falling or leaning is always sudden and precedes anxiety or panic, although sometimes my sense of it is that it happens simultaneously. . but I have had enough of them now to recognize that the dizziness hits a split second before the sudden disequalibrium.

.....Do I sound obsessed enough?...Both of these motion disturbances make me crazy and I have stopped trying to figure out where they come from...it is a never ending looping internal conversation. I would be happy to learn how to live with them.. just when I think maybe I am getting free of it , it lands on me again. The undulating sensation is much more doable.  I hope this makes sense to somebody....what a ramble.  Lapis, you are right..  this one is hard.  Wishing you all some breaks from this....coop

 

Hi Coop,

I appreciate your description of what's happening for you, and I understand your "never ending looping internal conversation" on the topic. Well put! As someone who tries to understand the "why's" of this symptom, it's good to hear from others who are going through it as well. Dizziness and disequilibrium are known to cause anxiety, and the literature is full of examples of it. It's one of the reasons given for prescribing benzos for dizziness, i.e. because they can help with the associated anxiety. What a catch-22, right! Sad.

 

I, too, had the gamut of symptoms, so it's hard to separate one from the other as causes of anxiety when they're happening simultaneously. I had depersonalization, which was wacky, plus over-sensitive vision and hearing, plus muscle cramping, insomnia, hair loss, increased nighttime urination, digestive issues and tremors. Much of that is gone, but I've got ongoing tinnitus, dizziness and resultant muscular pain, and have had them all along.

 

Anxiety due to sensations of the floor moving, being pushed/pulled or floating seems to me to be absolutely normal and a bit of a physical necessity in order to stop a person from falling, depending on how strong the forces are. Maybe not. Too much muscle tension isn't good but I've been able to catch myself on many occasions, and I've stayed upright the whole time. I'd prefer not to be one of the "falls/fractures" statistics! Yay for reflexes!

[[mo...]]

I have that "tipsy" feeling quite often and I can live with that, but I also have episodes of vertigo, where the world starts spinning, which make it pretty much impossible to function since I can't stand up, move my head or even open my eyes without losing it. Usually the vertigo episodes come suddenly and pass in a minute or two and I can hang onto a table or lean against a wall until they pass, but a couple of times I have had episodes where, if I didn't do something about them, like take an extra dose of Ativan and lie down until they pass, they would last for 12-24 hours or more. I do realize it's probably bad to take the extra Ativan during my taper while on Valium, but I can't function like that at all. I spoke to my pdoc about it and we decided to contact my neurologist about this hoping for more information and guidance. I am waiting to hear back. I will share if I get anything interesting or helpful, but I suspect it's all part of the benzo w/d journey and I will just have to get through it as best I can.

 

I also have strange perceptual episodes where, if I turn my head, the wall and floors (or the road, if I'm driving!) suddenly slant at an angle...or if I am looking at something stationary, it will start to move back and forth...or if I am at the supermarket, the aisles undulate or "roll" a bit, like waves. Also, I can't judge distance accurately — things seem either really far away or it seems as if when I get close they move. And my arms, already really long anyway, sometimes seem even longer when I reach for something. All this is tolerable, but it's very weird. Like being in a fun house without the fun...

 

I am still taking my chocolate covered ginger, which I think helps with my "tipsy" feeling and definitely made my transient nausea better. I also do yoga and tai chi, which always makes me feel better, but I have decided I am going to try slowing down my taper a bit and see if that helps.

[[Al...]]

Good morning everyone!! I hope everyone had a great night sleep. I woke up to snow..UGH.

 

I just ordered some Magnesium Glycinate and when I was reading reviews several people wrote that their doctors recommended it for dizziness. I just wanted to share that info with everyone. I have no idea if it works but there are a lot of people on BB who take Magnesium and they feel it helps them sleep.

 

Fran:)

[[Lo...]]

Good morning everyone!! I hope everyone had a great night sleep. I woke up to snow..UGH.

 

I just ordered some Magnesium Glycinate and when I was reading reviews several people wrote that their doctors recommended it for dizziness. I just wanted to share that info with everyone. I have no idea if it works but there are a lot of people on BB who take Magnesium and they feel it helps them sleep.

 

Fran:)

 

Hi Fran! Yep...snow down here south of you in the DC area too. Let me know how that particular magnesium works out :-)