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

[[La...]]

Hugs to you Miss. I’m so very happy that you posted such a detailed account of what pushing through means. I agree with you that we must carefully approach things in a gradual controlled manner when feeling better. It’s so wonderful to have a witness that although this is a long journey, it’s one that will end. You’ve been a beacon of light for many of us. Thank you for sharing this part of your life. This is a real struggle to wake up day after day and go to bed night after night with symptoms/ waves. Especially not knowing when they’ll end. After such a long time, we began to question if they will. If we’ll be like this forever. But, as you said, that’s just a symptom talking. We ARE healing everyday regardless of how it feels or looks. With just simple waiting, it manifests that it was doing that all along. I’m so proud of you that you persevered through all this madness. The hardest part for me is my vestibular symptoms keeping me from living a more enjoyable less restrictive life. I’ll never ever take for granted walking or driving after all this is over. I have a new respect / empathy for people who are stuck at in bed everyday. It sucks the life out of you. I’m doing all I can to sit up more and walk several times a day instead of walking a lot at once. This works best for me. As you said, we must know our body and figure out the middle ground. What works for you and what doesn’t. Then go from there slowly reconditioning ourselves. It’s impossible to give our brains normal exposures to simple things like sitting up to watch tv for example. Our CNS sees everything as a threat so we must let it know we are safe. Safety causes relaxation. As I’m starting to enjoy little things again, I’m being very careful not to overload. I push but don’t shove. Very soon you will be totally healed. I’m so very happy for you. And I’m right behind you. F I didn’t have these vestibular issues, I’d be about 90% healed. They’re getting milder now. I’m so grateful to God! I’m dreaming often now of driving again, going places, etc. It is my brain letting me know that my new life is well on its way. I’ll be free from these symptoms happily healed with a much greater appreciation for my health.

A wise man told me….to appreciate something means to know the value of it. This experience made me learn the value of everything! Things I thought I knew the value of but going through this I realized I didn’t. I wish you, me and everyone happy healing! ❤️🌹 Again, thank you….I needed to hear this!

[[He...]]

Miss F, thank you so much for this post. It's educational, honest and encouraging!  It's particularly helpful to me right now at 14 1/2 months post jump.  I have had 8 days of feeling pretty decent and while my activity level has increased, I'm doing my level best to keep it under control!  Your story is a good reminder to me.  I'm really happy for you that you have your life going on and have a good grasp on how to keep things rolling. 

 

Helen

[[Mi...]]

Thank you LadyDen & Helen,

 

Thank you for your sweet & detailed replies. Keep the positivity up.

Keep the light in your hearts.

[[La...]]

Hopper how are you today?

Big hugs to you all….

Miss, Helen, Hopper and anyone going through this. 🤗

[[He...]]

Good Monday morning,

 

Lady Den, I hope you are continuing to improve and doing that walking and sitting up and all the good things.  I hope this for ALL of you.  I haven't been boaty at all for about a week and a half.  I'm not declaring total victory but this has been a nice break for sure.  It feels great to be able to do more walking and yoga type exercise.  My boatiness started in a severe way back in 2017 and came and went multiple times for the past 5 years.  I'm hoping it goes for good soon.  So for those of you dealing with it right now, I UNDERSTAND. But maybe your break is coming soon.  I hope so!

 

Helen

[[La...]]

Yay Helen….completely gone for a week!!! How awesome. That gives us hope. Mine does take very short breaks now since turning 2 years. I can only imagine how it feels to be completely gone for days! Wow! Gives me something to look forward to.

Yes I’m trying to walk more and sit up more. It’s hit or miss. I’m unfortunately at the mercy of my symptoms. When they allow me to do things I do. When they don’t I rest in bed. I wish I didn’t have to but it is what it is as you said…for now. These will be gone someday soon. I’m waiting. 

Thanks for being a dear sweetheart! Love you bunches! ❤️❤️❤️❤️❤️

 

Today I’m going to step it up and see what happens. I’ll keep you all posted.

[[Ho...]]

QUESTION:  We all get the that floaty, boaty, ground coming up to meet you, being in an elevator, getting knocked around feeling.

 

But do any of you get lightheaded? Like feeling faint even to the point of seeing black spots?  This happens to me when I exert myself or if I bend over / down or sometimes even if I tilt my head back and look up.

 

Sometimes it feels like I’m in a jet aircraft or on a roller coaster pulling a lot of negative G-Forces. Like my head is being compressed until I black out. I don’t actually black out, it just feels like I might.

 

I often wonder if I am alone in this feeling.?.?  Anybody else?

[[La...]]

Helen I did have a successful walk yesterday. It felt so wonderful. Definitely had a window day. So I’ll take that for now. But I’m telling my brain “hey you can do better than that! Get me back to normal.”  I pray that you’re still doing well. In a couple of days I’ll be 26 months….wow I’m not believing how long this takes but it’s so anyhow.

 

Hopper any of these symptoms there’s other people that have it too…past or present. They’re so weird and crazy that sometimes people can think they’re the only one experiencing them but nope! I’ve had the “I’m going to faint” feeling plenty of times with visual disturbances and weird head symptoms. So weird that I can’t really describe them. If you go read some of my posts you’ll see me say I felt like passing out but I never did. The same thing with being off balanced very badly….I never fell down when walking but it was because I caught myself. These symptoms are ridiculous, right? Just shows the unbelievable damage that was done in our brains. I have the visual disturbances still but they’re milder and very short lived. Mostly annoyingly so. To ease your mind you can type in the top left search bar your symptom and read older posts that went through it. You’ll see that with time they healed and we will too.

[[He...]]

Lady Den,

 

As you know, I'm thrilled you got that good walk yesterday and I hope you can today too.

 

Hopper, I definitely had some lightheadedness in the past from leaning over.  My BP got really low for a while so I wondered if that was part of the reason.  I hope that lets up for you soon.

 

Helen

 

[[Ho...]]

Thanks for the replies ladies! Glad to hear you had an enjoyable walk LadyDen!

 

I woke up today with the whole right side of my head / upper face all numb and tingly. This just never seems to end.

 

Hope y’all find some joy in your day!  😊

[[Li...]]

Ha Lady Den, great that you had a window and was able to walk!  :thumbsup:

 

[[La...]]

Thanks all of you Sailboaters    You’re very kind. I’m wishing you all catch a break from your “waves “.

Do any of you talk to your brain….for example I’ve been known to say “ ok stop that tossing me around. “

Strangely it helps a bit. I’m glad nobody is here to see me doing that because they’ll think I’m nuts. 

And what have you all tried to do to see if it helps dampen down your boatiness?

 

Wishing you all a smoother day with calmer waters. Big hugs!

Yesterday was not so good again. Oh well I’m going to see what today brings.

[[He...]]

LD,

 

I like the talking to your brain idea. Very good.  I talk to myself but maybe it's my brain I need to address. 

 

One thing I've done is while I'm walking and I'm boaty (which I haven't been in a while now...yay) but is to focus my eyes ahead of me, take a deep breath and try to imitate a normal, loose walk with really good posture. Under my breath, I'm muttering "you've got this".  It helps me....

 

I'm not boaty but my head hurts today so maybe I'll thank my brain for being steady but ask it nicely to stop hurting.  This is the first headache in over 2 months so I know my brain knows how to do better than this.  haha.

 

Sorry you had a rough day yesterday, LD. May today be kinder to you. 

 

Helen

[[La...]]

Helen I’ve got a headache today too. Ughhhh! These symptoms are crazy and random.

I’ll try what you said when I go for a walk today. Big thanks!

Hope your headache goes away.

[[Ho...]]

Same…Headache and raging tinnitus today as well.  Probably because I didn’t sleep well again. I woke up at 2AM with more chest pain that didn’t resolve right away so that led to a full on panic episode with tachycardia. Thought I was having a heart attack, clearly it wasn’t that but it ruined any chance of sleep for me. Hoping tonight will be better. I can’t believe I am still having issues like this at 44 months off this poison.

 

Be well friends! Sending healing thoughts your way!

[[La...]]

Hopper 44 months is unbelievable! Wow no wonder we began to think we will never heal. But there’s many people that took longer. I see the average is about 3 years. We will heal….we are healing everyday.

I hope your symptoms POOF gone! And mine too. They’ve held us prisoner long enough! 

 

 

[[Ho...]]

Thanks for the boost LD! Trying to keep the faith but I’m starting to fear that 20+ years of use might be irreversible. Or perhaps this is the last big slam before I get some relief. Hoping it’s the latter…

 

Best wishes and healing thoughts!

[[La...]]

Hopper my vote is the latter as well. Big slam then all is done. 

I’m hoping this is what’s happening to me too. Let’s keep that thought and look forward to the end of this. I do see that ribbon across the finish line, my friend. We are right there at it. We can’t just sit on the ground now. If need be that you can’t get up then take my hand 🤝 let’s get across. We earned it! We got this! Sometimes in a long race, we get tired and have to sit down to rest but we can’t stay there. I’ll be dayum if I go this far and just sit there. Nope, not today! 

 

You know what? I’ve put in all these months and I want the rest of my healing!!! It’s coming! Our brains is fine tuning us right now. Going through our brains trying to tune the station to hear the music clear on our radio 📻. You remember that? Turning the dial to rid the static scratchy but you can hear the station coming in through that static? That’s what we are doing, my friend. It will find our station soon and we can jam! 💃🏻📻🕺🏻 Everyday will be a jam!

Good for you to keep the faith! It’s not in vain. All we have to do is wait and see.

 

[[Ho...]]

I know you are right LadyDen! 😊 It’s just that I’m not getting any younger and everyday that gets away from me is one less I have. But I agree, we must keep moving forward and hoping for the best!

 

Hope you have a great day! 😊

[[La...]]

I’m not getting any younger either. I’m in my latter 40’s. With a birthday coming in less than 2 weeks. I’m aware that’s not old but I’ve been sick for 3-4 years of my 40’s ( counting my taper and the year prior). Today I’m 26 months free and still struggling with healing. The difference in last year is that I didn’t see that ribbon at the finish line. I just knew it was there. This year, although so far feels like a second acute but milder, I can see it. There’s buddies this far out that just wakes up healed. Wow wouldn’t that be awesome! Seeing we’re this far out, I’m looking at my healing as any day now 

I had a thought that if there was a way for each of us to tell how long it would take, we probably wouldn’t do it. So, in a way, it’s a good thing that we can’t figure all this out. I’ve also heard others say that if they knew when then it would be easier to handle. What’s your thoughts? Me personally, I think I’d like to know if I could.

[[Re...]]

At what part of your taper did your dizziness start?

 

Redbird Flies 🌹

[[La...]]

Good morning Redbird. Btw, cardinals are my favorite so I’m loving your profile. 

 

To answer your question…my dizziness/ boatiness/ severe unbalance/ sudden vertigo episodes started at the end of my taper. I believe all my tapering caught up with me at the end. Which is why it’s strongly advised to go slow especially at the end. Prior to that, I wasn’t dizzy, boaty, vertigo episodes or unbalanced NEVER EVER in my whole life. These vestibular symptoms has been with me the entire time since then. I’ve had breaks up to two months at a time where they were mild or gone for hours. I get slammed every few months with them becoming intense for a few weeks then settle back to my baseline. Today I’m 26 months and I’ll say that they’re milder and better than last year for sure. I was on a walker just to tolerate standing up to go to the bathroom. I had to hire a caregiver because I was totally bedridden with these vestibular issues. As of now, I can walk around whenever I’d like including when I’m boats or unbalanced. I can cook my own meals, take a bath, go for short walks, do chores and sit up for a little over an hour to watch tv or do something fun. But, I can’t drive, can’t go anywhere, can’t walk far….housebound still.

Hope yours go away quickly. Some do some don’t. These have been my worst and longest lasting symptoms. If they would heal completely I’d say I’m back to normal. They’re what’s keeping me from living a normal life. I’ve had vestibular special therapy, physical therapy 2-3 times, yoga and all kinds of exercises. NOTHING helped. Except time. So, I’m still waiting. 

[[Ho...]]

I’m not getting any younger either. I’m in my latter 40’s. With a birthday coming in less than 2 weeks. I’m aware that’s not old but I’ve been sick for 3-4 years of my 40’s ( counting my taper and the year prior). Today I’m 26 months free and still struggling with healing. The difference in last year is that I didn’t see that ribbon at the finish line. I just knew it was there. This year, although so far feels like a second acute but milder, I can see it. There’s buddies this far out that just wakes up healed. Wow wouldn’t that be awesome! Seeing we’re this far out, I’m looking at my healing as any day now 

I had a thought that if there was a way for each of us to tell how long it would take, we probably wouldn’t do it. So, in a way, it’s a good thing that we can’t figure all this out. I’ve also heard others say that if they knew when then it would be easier to handle. What’s your thoughts? Me personally, I think I’d like to know if I could.

 

Hi LadyDen!  I think that the waking up healed one day gag is just that, an old wives tale if you will. Lol I can’t see my self waking up one day and all 7 or 8 of my worst symptoms are just gone. It would be nice, but I’m not putting any stock in that. I’ve been asked quite a few times: “When will you consider yourself healed?” My answer is always the same…The first day I wake up and and go through my day without thinking of any of this. Or least when it’s not the first and only thought I have upon waking.

 

But, to answer your question: Yes! I would like to know when my heal date is!  The ambiguity of all this is sometimes the worst part for me. Even if I was told it was a couple years away, I could handle that. It’s been like 6 years already counting my taper and the sickness from tolerance withdrawal leading up to it. At least I would know that I WILL heal! 

 

Best wishes! I hope you are having a good day! 😊

[[Re...]]

Lady den… I am at 1 mg and started feeling woozy in my head and went to Dr and I had a sinus infection. I’m hoping that is where my dizziness was coming from. Bless your heart you have really been through a lot. Prayers for complete healing for you! Redbirds are my fav too. My Mom always said they were a love note from God. She loved them too! They have a special meaning for me.

 

Redbird Flies 

[[La...]]

Hopper, yes I feel the same! The morning I wake up and feel like a normal human being without the floor like a funhouse AND symptoms are not a thought all day then I’d also say I’m healed. I know waking up suddenly healed is like winning the lottery. But now that I think about it, everyone heals…most of us completely so we all will wake up healed. After it’s been years especially past 4 I can see why you feel the way you do. Please don’t give up. All those years of damage takes time to reverse. To me, your timeline is reasonable in that respect. I see us both making big gains in our healing soon. All this time we’ve put in isn’t for nothing. Unfortunately some people are just slow to heal all the way to the finish line. Some are slow for years then suddenly speed up making a mad dash to the end. IMO you’ve done an excellent job of being patient enduring the best you can. Especially being longer than some others. Please be encouraged and remain patient. I don’t see any reason why you will be an exception to the rule…you will heal my friend. Believe it and you’ll see it….not the other way around - seeing is believing. Nope! Believe it then you WILL see it. I’m here with you, my friend. Healing is NOT a fantasy or a pipe dream even if it takes us a little longer than we thought. Big hugs! 🤗

 

Redbirds I love that about Cardinals being a show of God’s love. It is especially touching to me because one day I was so boaty and unbalanced a couple of months ago……

I was laying in bed feeling so defeated, lonely, sad, unloved and discouraged. All of a sudden God told me to get up and look outside my patio door. It was very strong that I couldn’t ignore it. I heard a bird as I was approaching the sliding patio door. It was singing loud right in front of me. It was a cardinal. It wasn’t scared of me or flew away. It Just sing to me looking at me. While it was singing I noticed I didn’t feel the floors under me moving. I was able to just stand there not holding on to anything to enjoy its song. I knew right then it was God letting me know that he’s with me. A beautiful lesson of a visit from a bird. God told me that I’m like that cardinal, he loves me, I’ll be free of this and will sing a happy song in my heart when I am. I was so inspired feeling his love that I painted that cardinal on canvas. If you go read my posts from a few months ago, you’ll see it about my cardinal visit. 

I’ll never forget that special visit! Never has that happened before and has not happened since. So I know it was God coming as a cardinal to comfort me. I also wrote a poem on my poetry cafe thread about it.

Big hugs to you. Thank you for sharing this as it has a special meaning to me. ❤️