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


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Thanks for the pick me up LadyDen. Your positivity is admirable and I will strive to emulate your resolve! Hopefully one day in the future we will talk and say “remember when we thought we’d never heal, how silly were we!?!?” 😬

 

Sending healing thoughts and good vibes!

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I was going so well and then got hit with a strong bout of fear and dread in the night along with bad dizziness attacks today.

 

Im so depressed. Every time my system starts to feel stable, it then goes haywire again and again.

 

Heres the hoping its short lived and progress happens. 5 years of this, Im so flipping over everything. its not fair.

 

Pinky

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Thanks for the pick me up LadyDen. Your positivity is admirable and I will strive to emulate your resolve! Hopefully one day in the future we will talk and say “remember when we thought we’d never heal, how silly were we!?!?” 😬

 

Sending healing thoughts and good vibes!

Yes we will Hopper! We will say “ remember this or that?”

This WILL be something in our past. We wait we watch and we’ll see.  :smitten:

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I was going so well and then got hit with a strong bout of fear and dread in the night along with bad dizziness attacks today.

 

Im so depressed. Every time my system starts to feel stable, it then goes haywire again and again.

 

Heres the hoping its short lived and progress happens. 5 years of this, Im so flipping over everything. its not fair.

 

Pinky

:mybuddy: Pinky I’m sorry that you’re getting slammed again. It makes me wonder if anything triggered it? Sometimes it’s not anything that was done. They just randomly happen. But when as far out as you are and you were doing well prior, it makes me think that perhaps you’ve had too much stress too soon. Have you been exercising more, more walking, less resting, eating something new, working too hard, family issues, etc. At 5 years out this is so ridiculous so I get what you’re saying. I’m 26 months and I’ve been tired of this for awhile now. It’s like I’m being teased with windows then a slam - back in bed. So frustrating! But we both know how this goes….up and down with no reasoning in sight. We’re at its mercy until it’s completed. After awhile of feeling better it’s common to think you’re healed and get slammed. But the good news is that it doesn’t usually last long. You’ll be back to your baseline in no time. So just rest and wait it out. Apparently there was some fine tuning needed. Your brain is repairing it. That’s a good thing although it sucks too. Stay strong. Don’t let Benzo Beast lie to you in thinking you won’t ever heal. You’ve healed very much and no reason why you won’t continue to.  :thumbsup:

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Help,

 

Boaty in the bed again, but worse than usual.

 

Unbelievable. This has been happening for several nights over the past week. I usually have a teeny tad of boatiness when first laying down, but it's mild and it goes away quickly. Or I go months without having it at all.

 

Not the situation now. I feel pretty good all day. I'll be sitting in the chair relaxed right before bed. Feeling normal and as soon as I lay down in the bed the boatiness starts. It will settle down & then hit me again suddenly when I just drift off to sleep, and my body jolts and then cortisol surge & then I can't sleep. Or I  will finally fall asleep for a few hours and I wake up in the middle of the night with dizziness/boayiness then cortisol surge a some nausea.

 

I have not had this to this extreme in two years. If I have had it it's only for like one morning then it's gone for months. I have had this issue the last 3 or 4 nights in a row. It is making me afraid to go to bed.

 

I'm tempted to do an dix halpike to test for bppv and an Epley manuever, but I have done that in the past for it to only make things horribly worse while performing all of it & it doesn't help anyway.

 

I cannot believe that this symptom is back. My bed is up high. I have a night light on. My husband tries to relax me so I fall asleep.

 

I basically lay in bed trying not to move, scared to fall asleep for an hour or so until my body just finally is so tired I fall asleep anyway. I have been able to sleep more until morning after that happens.

 

Any suggestions?

 

Fortitude

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Thanks Becks Blue.

 

Its crazy. I'm literally sitting in my bed typing this, and I'm not dizzy nor boaty at all, but as soon as I lay back onto the mattress the boatiness kicks in, and it's hanging on longer than usual preventing me from feeling safe enough to fall asleep.

 

Haven't had this issue in two years.

 

It's like I have to lay there & convice myself that the room will not take off spinning & its just the typical dizziness & boatiness that I've had on & off throughout this.  Its just that for some reason it's as bad as it was two years ago now & causing the cortisol surges too. I have not had that symptom in a long, long time.

 

Ugh. I hope it ends soon. I've slept like crap the last few nights because of this.

 

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Miss Fortitude,

 

It is really odd that this has come back for you after being gone so long. It's perplexing and I'm sure very distressing for you. I'm so sorry. I wish I had some answers.  How long ago did you try the Eppley Maneuver and have it make you feel worse?  Maybe it's worth a try now?  But I understand if you don't want to risk getting worse.  Ugh. So sorry.  I hope it passes quickly.  It sounds like a fluke.

 

Helen

 

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Helen,

 

Thanks for your reply.

 

I have not done the Dix Halpike test/Epley Manuever in over a year and a half. The last time I did it was on a day that I bent over & got pretty dizzy, more than normal, so i did it to "rule things out" to try to bring me peace of mind. I didn't have any nystagmus, so it was negative but it really brought on the dizziness to an extreme.

 

Throughout this whole journey, I always get to wondering if I have BPPV gummed up into this dizzyness/boatiness symptom thing when it gets extreme, and I conclude that it's not BPPV, it's just a crappy consistent symptom of my withdrawal.

 

Earlier on,  since the symptom was more frequent & severe back then, I did a lot of Dix Halpike tests & an Epley here & there all just to be sure. It has never helped, it has only ramped symptoms up more in the moment, so my husband & I conclude that its not BPPV and it's just the withdrawal, especially since the dizziness/boatiness has continued on & off over these past three years no matter if I do an Epley or not.

 

Just doing the Dix Halpike brings on so much anxiety because it feels awful to do that test while in the midst of being dizzy. I hate doing it, & for what? That symptom never has permanently left anyway. If it was really BPPV, the Epley Manuever should fix it & it should go away.

 

Like everything else, hopefully it passes soon. - Ugh.

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OK, I get it. Thank you for that explanation. I've had several people tell me a physical therapist would help me with the maneuvers but I am like you...it's not going to help. I've done the Eppley on my own and it did nothing. I hope yours passes very soon!! 
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Hey Miss. I’m sorry to hear boatiness at night have returned. Now, I’m going to say some things but I mean well. It’s out of love.

Firstly, IMO I think you should view this revisitor as just that! It is a visitor which will be temporary. Although unsettling to see it again, focus on the fact that your brain knows how to kick the boatiness out of your house when it has overstayed its welcome. I truly believe that we can sometimes put gas on a spark making it bigger when if we just firstly not panic it would be easier to handle. DO NOT give this symptom the satisfaction of making you fear your bedtime! Do your best to reclaim your bedtime peace and ignore the boatiness. It is very sweet that your hubby comforts you. Use that to direct your focus. Tell yourself when it appears that it’s not welcome….it’s not a big deal…you’re alright…etc. Don’t give it a stage to perform on. You know what I mean?

Secondly, it is understandable to be frustrated with this popping back up BUT atleast it isn’t lasting all day long like mine is. The fact that it doesn’t is a good sign. I believe what has happened is your brain “stumbled” upon an area that needed a bit more tuning. This is not unheard of in this recovery especially as far out as you are. There has been plenty of former buddies that had a symptom or two pop back up after being gone for months or even a year. The good news is that it’s milder and short lived before finally gone for good. I think yours will do the same when it leaves again….and it will leave.

Lastly, if you can’t beat it then join it! I know this sounds crazy but hear me out….. the way I’ve dealt with this horrible symptom is joining it on imaginary boat adventures. Since I have it and I can’t make it go away then I figured why let it have me stressed out by fighting it? So what I do is pretend I’m on a boat going somewhere or just relaxing on a nice lake bobbing along. And btw, mine gets worse at bedtime too. Or I pretend I’m on a waterbed. You remember those? I’ve even pretended I’m being rocked to sleep by my mother. Who I miss very much. It’s very sweet to pretend it’s her because that’s the closest I’ll get to being with her. During that time, I close my eyes imagining her smiling face and I’m a little child on her lap being rocked. Next thing I know, I’m asleep.  :thumbsup:

Since you’ve had this before then what did you do that helped? To cope with it?

I think since getting maneuvering made things worse then you shouldn’t do it again. You know what this is and maneuver won’t help so why have it as an option? If I were you, I wouldn’t do it. Once you try it and it gives the same result of making you worse, then what? Please don’t think I’m coming across in an ugly way….I just would hate to see you do something to make yourself worse. Many of us, myself included, have tried things to get relief and unfortunately it don’t turn out well. When all we had to do was wait it out. It’s understandable because we’re so uncomfortable! These symptoms are beyond awful for us to deal with for so darn long. I’m so very sorry you’re back on this thread. Please know that it will pass soon. Until then you have our support. Big hugs to you, Miss.

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Hey Miss. I’m sorry to hear boatiness at night have returned. Now, I’m going to say some things but I mean well. It’s out of love.

Firstly, IMO I think you should view this revisitor as just that! It is a visitor which will be temporary. Although unsettling to see it again, focus on the fact that your brain knows how to kick the boatiness out of your house when it has overstayed its welcome. I truly believe that we can sometimes put gas on a spark making it bigger when if we just firstly not panic it would be easier to handle. DO NOT give this symptom the satisfaction of making you fear your bedtime! Do your best to reclaim your bedtime peace and ignore the boatiness. It is very sweet that your hubby comforts you. Use that to direct your focus. Tell yourself when it appears that it’s not welcome….it’s not a big deal…you’re alright…etc. Don’t give it a stage to perform on. You know what I mean?

Secondly, it is understandable to be frustrated with this popping back up BUT atleast it isn’t lasting all day long like mine is. The fact that it doesn’t is a good sign. I believe what has happened is your brain “stumbled” upon an area that needed a bit more tuning. This is not unheard of in this recovery especially as far out as you are. There has been plenty of former buddies that had a symptom or two pop back up after being gone for months or even a year. The good news is that it’s milder and short lived before finally gone for good. I think yours will do the same when it leaves again….and it will leave.

Lastly, if you can’t beat it then join it! I know this sounds crazy but hear me out….. the way I’ve dealt with this horrible symptom is joining it on imaginary boat adventures. Since I have it and I can’t make it go away then I figured why let it have me stressed out by fighting it? So what I do is pretend I’m on a boat going somewhere or just relaxing on a nice lake bobbing along. And btw, mine gets worse at bedtime too. Or I pretend I’m on a waterbed. You remember those? I’ve even pretended I’m being rocked to sleep by my mother. Who I miss very much. It’s very sweet to pretend it’s her because that’s the closest I’ll get to being with her. During that time, I close my eyes imagining her smiling face and I’m a little child on her lap being rocked. Next thing I know, I’m asleep.  :thumbsup:

Since you’ve had this before then what did you do that helped? To cope with it?

I think since getting maneuvering made things worse then you shouldn’t do it again. You know what this is and maneuver won’t help so why have it as an option? If I were you, I wouldn’t do it. Once you try it and it gives the same result of making you worse, then what? Please don’t think I’m coming across in an ugly way….I just would hate to see you do something to make yourself worse. Many of us, myself included, have tried things to get relief and unfortunately it don’t turn out well. When all we had to do was wait it out. It’s understandable because we’re so uncomfortable! These symptoms are beyond awful for us to deal with for so darn long. I’m so very sorry you’re back on this thread. Please know that it will pass soon. Until then you have our support. Big hugs to you, Miss.

 

LadyDen,

 

My husband & I both read this and it brought me to tears. It brought my husband to tears!

 

This is hands down the best advice I have ever received on this forum. This is better advice than I received even from "Dizzy/Vertigo" websites that I paid a lot of money for back in the day when I was in tolerance & dizzy & had no idea why. You gave a lot of info here in a very concise, easy to read manner.

 

I am so thankful for that. So thankful for you.

 

I felt kind of bad coming on here last night & so soon after I had just posted how I was doing pretty well like a week ago. I hesitated to post this, but boy am I glad that I did.

 

The part about "imaging my mom rocking me to sleep" really hit home because my mom passed away 7 years ago & boy do I miss her.

 

You're right ... giving it "a stage to perform on" fuels it. It's a vicious cycle that can be easy to fall into.

 

When I was up at 2am, while in the thick of it posting on here, that actually distracted me enough & took my mind off of it & I was then able to lay back down. The boaty/dizzy feeling was gone,  & I fell asleep with no problems for 6 hours straight. So, a bit of distraction & sitting up in bed for awhile helped. Venting about it on here probably helped too.

 

I think your suggestion of imagining it as something comforting versus something to be afraid of is really great. Everything about your reply is really great. I am speechless. There should be a part of this thread, because this is such a common symptom in withdrawal, there should be a separate area to quickly access for tips & tricks & what you wrote here should definitely be in there.

 

Like you, at one time, especially during tolerance when I had no idea the benzo was the issue, I too experienced the "dizziness/wobbly boat/balance issues" all day long. It went on for quite some time. Long enough for me to pay a lot of money to see not only numerous specialists, but to join online support groups, read books. You know exactly what I'm talking about. I'm saying this because it finally did get to a point where it lessened more and more as the months passed. The same thing will happen for you too LadyDen. It sounds like you've had some relief lately and that will continue.

 

I think you're right. I think my Brain/CNS/body is "fine tuning". Working out the residual issues. Also, this summer seems to have been a period of "testing the waters" for me. I've been more active and doing more, more frequently than I have in all of this, and my brain is adjusting.

 

I can totally tell that this has come from a place of love from you & I feel so very very blessed to have you take the time on here to help me. You're such a kind soul!  :smitten:

 

-Fortitude

 

 

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Miss F and LD,

 

Sorry to horn in on your conversation here.  But I read both your posts as well and I have to agree. LD's advice is phenomenal.  It hit home for me too. I'm not have a boaty wave but dang if I don't have  just about every single symptom in the book otherwise. I too, like to think of my Mom holding me. She died a year and a half ago and gosh, I miss her!  She used to put her hands on the sides of my face and tell me she loved me. She was a little bit rough (haha) but that was just the way she expressed herself. It was so comforting.  Also, the part of not giving the waves a stye to perform on ....spot on, LD, spot on.  Thank you both for this supportive thread.  We all need support at times.  I hope you both feel better soon. 

 

 

Hugs and gratitude,

Helen

 

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Miss and Helen you are both so very welcome! It is my pleasure to share with anyone something that helps. I have to return the love that has been given to me on this site. It literally saved my life! Anything I say comes from a place of love. Always ❤️ That’s just who I am by God’s grace.

I had to share that about my mother because it got me through many months of being tossed about at night. My mother was very loving mild mannered lady. I still use all of her little “sayings” she used to tell me….like give people their flowers while they live, you don’t miss the water until the well runs dry, if you dig a ditch for someone to fall in it you might fall in it yourself, a lady always knows when to leave, don’t put the cart before the horse, fool me once shame on you but fool me twice shame on me, when somebody shows you who they are then believe them the first time, God’s eyes and ears are never closed….etc etc Wow I miss her so much! Both your mothers sound like outstanding women too. How wonderful to include them in our recovery. I’m a firm believer that those who take off the flesh are not gone. Everyone has a spirit within that is eternal. So they’re around even though we don’t see them because we are still in the flesh. I talk to my Mama still.  ;)

Miss I agree about the thread of having tips and tricks. Great idea! Plenty of times I could have used it. And yes I do believe in my healing. It’s happening daily. Now, I’m not too happy about it being so slow but as long as it’s going then that’s alright with me. My symptoms have improved. For that I’m grateful. I do not want to be found guilty of complaining when there’s someone somewhere way worse than me. Complaining too much is also giving these rotten symptoms a stage to perform on…they don’t need anymore spotlight.  :laugh:

It fills my heart with joy that you had a better night, Miss. I pray you get many more. Continue to welcome the boatiness at night. Let it be a way of visiting with your Mom. And you too Helen….no matter what your symptoms. The principle works the same.

Together we are rising to the top to get over this mountain. And we will get over it! Our brains know what to do. If we’re feeling it then it’s healing it. That’s a great thing!  :thumbsup: Just like a wound healing, it starts itching. One day it does the next it doesn’t until the process is complete. This is a roller coaster for sure…..have you ever in your life seen a never ending roller coaster? Nope! They all come to an end.  :thumbsup:

 

:smitten: :smitten: :smitten:

 

You ladies are beautiful souls too!

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LadyDen, Miss Fortitude and Helen,

 

Your posts have been a real blessing for me today. I’m experiencing some moderate dizziness, boatiness  and tinnitus today. I haven’t had it for some time so it’s taken me by surprise.

 

I’m so grateful for you all.

 

Sandy🥰

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Big hugs Sandy dear! Sorry Captain Jack Sparrow paid you another visit. These symptoms are wild like that. They disappear for months even a year then just randomly pop back up.  :idiot:

Please be encouraged that yours won’t stay around too long. It knows how to walk the plank and it will do it again. Until then please be careful not to fall. Wishing you speedy healing.

Love 💗

Btw, don’t give that drunk pirate any attention.  :thumbsup:

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Sandy  :laugh: :laugh: :laugh:  :thumbsup:

 

Sometimes we must laugh at our troubles to keep from crying.

To hell with these crazy drunk pirates trying to get our booty  :laugh:

They’re not welcome!  :tickedoff:

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Hi Floaty - Boaty family,

 

I drove for six hours today on a trip to see my aging father. I have 4 more to go tomorrow. I just couldn’t make it all in one day without sure dire consequences. Every time I travel like this I am so jacked up when I stop for the day. It’s like all the vibrations and motion from driving really set my vestibular sxs off.  It feels as if my body cannot adjust to not moving and vibrating anymore. The floor is moving beneath me now, the inner vibrations throughout my body and the tinnitus are absolutely raging as well. I’m hoping it will improve by morning. Sometimes it does and sometimes it doesn’t. 

 

Anybody else get this?

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Hi Floaty - Boaty family,

 

I drove for six hours today on a trip to see my aging father. I have 4 more to go tomorrow. I just couldn’t make it all in one day without sure dire consequences. Every time I travel like this I am so jacked up when I stop for the day. It’s like all the vibrations and motion from driving really set my vestibular sxs off.  It feels as if my body cannot adjust to not moving and vibrating anymore. The floor is moving beneath me now, the inner vibrations throughout my body and the tinnitus are absolutely raging as well. I’m hoping it will improve by morning. Sometimes it does and sometimes it doesn’t. 

 

Anybody else get this?

 

Hopper,

 

I'm so sorry!  Back in May of this year, I rode in a car for 5 hours (it was VERY hot outside and every time we stopped at a rest area, it was nauseatingly sweltering out).  I literally could not get out of bed until almost lunch time the next day. I could barely stand up. I have to assume it was the movement of the car combined with the heat. I came out of it in less than 24 hours but I had all that you mentioned.  I've since then had 3 hour car rides that went fine.  But I can identify with what you are saying.  I so hope you feel better quickly.  Good luck tomorrow!

 

Helen

 

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Hi Floaty - Boaty family,

 

I drove for six hours today on a trip to see my aging father. I have 4 more to go tomorrow. I just couldn’t make it all in one day without sure dire consequences. Every time I travel like this I am so jacked up when I stop for the day. It’s like all the vibrations and motion from driving really set my vestibular sxs off.  It feels as if my body cannot adjust to not moving and vibrating anymore. The floor is moving beneath me now, the inner vibrations throughout my body and the tinnitus are absolutely raging as well. I’m hoping it will improve by morning. Sometimes it does and sometimes it doesn’t. 

 

Anybody else get this?

HELL yeah I do!  :laugh: Sorry but I couldn’t find another way to say it. That is why I can’t ride in the car. As soon as it moves my symptoms go crazy! I have to go back in the house and lay down until it settles down. Vestibular symptoms are my main problem this whole recovery journey. If it would heal more, I’d be back to normal. The other very minor annoyances I can live with. So I’m waiting until I can tolerate the car. It’s why I’m still a prisoner in my home. Can’t drive, can’t go anywhere  :tickedoff:

 

But I will say it does get better with time. How much time I don’t know because each is different. I’m proud of you for going as far as you did. I’m amazed! Well done my friend. I’m cheering you on to make it back safely. And you will.  :thumbsup: Please keep me posted.

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Lady Den,

 

Thanks for your very kind reply. Everyone is so very supportive on this board, especially you.

 

I'm doing better with sleep for now. It was rough for almost a week. Not that bad in the grand scheme of things. Your helpful tips on how to fall asleep when feeling boaty in bed came in a very timely manner. Thank you so much.

 

I know dizziness is one of your big symptoms that has hung around for you, but I'm glad to hear your other symptoms are minor annoyances. You have already made some improvements in the vestibular area. This is very good. You will get there.

 

 

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Hi Floaty - Boaty family,

 

I drove for six hours today on a trip to see my aging father. I have 4 more to go tomorrow. I just couldn’t make it all in one day without sure dire consequences. Every time I travel like this I am so jacked up when I stop for the day. It’s like all the vibrations and motion from driving really set my vestibular sxs off.  It feels as if my body cannot adjust to not moving and vibrating anymore. The floor is moving beneath me now, the inner vibrations throughout my body and the tinnitus are absolutely raging as well. I’m hoping it will improve by morning. Sometimes it does and sometimes it doesn’t. 

 

Anybody else get this?

 

Hopper,

 

I'm so sorry!  Back in May of this year, I rode in a car for 5 hours (it was VERY hot outside and every time we stopped at a rest area, it was nauseatingly sweltering out).  I literally could not get out of bed until almost lunch time the next day. I could barely stand up. I have to assume it was the movement of the car combined with the heat. I came out of it in less than 24 hours but I had all that you mentioned.  I've since then had 3 hour car rides that went fine.  But I can identify with what you are saying.  I so hope you feel better quickly.  Good luck tomorrow!

 

Helen

 

Thanks for the reply Helen!  I’m glad to hear it’s gotten better for you!  Made it the rest of the way and hoping it clears out a bit by tomorrow.

 

Best wishes! 

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Hi Floaty - Boaty family,

 

I drove for six hours today on a trip to see my aging father. I have 4 more to go tomorrow. I just couldn’t make it all in one day without sure dire consequences. Every time I travel like this I am so jacked up when I stop for the day. It’s like all the vibrations and motion from driving really set my vestibular sxs off.  It feels as if my body cannot adjust to not moving and vibrating anymore. The floor is moving beneath me now, the inner vibrations throughout my body and the tinnitus are absolutely raging as well. I’m hoping it will improve by morning. Sometimes it does and sometimes it doesn’t. 

 

Anybody else get this?

HELL yeah I do!  :laugh: Sorry but I couldn’t find another way to say it. That is why I can’t ride in the car. As soon as it moves my symptoms go crazy! I have to go back in the house and lay down until it settles down. Vestibular symptoms are my main problem this whole recovery journey. If it would heal more, I’d be back to normal. The other very minor annoyances I can live with. So I’m waiting until I can tolerate the car. It’s why I’m still a prisoner in my home. Can’t drive, can’t go anywhere  :tickedoff:

 

But I will say it does get better with time. How much time I don’t know because each is different. I’m proud of you for going as far as you did. I’m amazed! Well done my friend. I’m cheering you on to make it back safely. And you will.  :thumbsup: Please keep me posted.

 

LadyDen, I’m sorry you are still dealing with this too! I don’t do too bad when actually moving, it’s when I stop that it all seems to go haywire. Even like at a stoplight. It’s like my body can’t shift gears back into stationary mode. Made it the rest of the way and hoping it clears up a little by morning. The chest pains have been up as well and that is always scary for me. Hoping for the best the next few days.

 

Cheers!

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Hi Floaty - Boaty family,

 

I drove for six hours today on a trip to see my aging father. I have 4 more to go tomorrow. I just couldn’t make it all in one day without sure dire consequences. Every time I travel like this I am so jacked up when I stop for the day. It’s like all the vibrations and motion from driving really set my vestibular sxs off.  It feels as if my body cannot adjust to not moving and vibrating anymore. The floor is moving beneath me now, the inner vibrations throughout my body and the tinnitus are absolutely raging as well. I’m hoping it will improve by morning. Sometimes it does and sometimes it doesn’t. 

 

Anybody else get this?

 

Hopper,

 

I'm so sorry!  Back in May of this year, I rode in a car for 5 hours (it was VERY hot outside and every time we stopped at a rest area, it was nauseatingly sweltering out).  I literally could not get out of bed until almost lunch time the next day. I could barely stand up. I have to assume it was the movement of the car combined with the heat. I came out of it in less than 24 hours but I had all that you mentioned.  I've since then had 3 hour car rides that went fine.  But I can identify with what you are saying.  I so hope you feel better quickly.  Good luck tomorrow!

 

Helen

 

Thanks for the reply Helen!  I’m glad to hear it’s gotten better for you!  Made it the rest of the way and hoping it clears out a bit by tomorrow.

 

Best wishes!

 

I'm glad you made it the rest of the way. Now, time rest. I hope tomorrow is kind to you. 

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