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

[[La...]]

Just an FYI here: I've watched a few more videos from "The Steady Coach", and she does some success story-type videos with people who have gotten better from chronic dizziness. I've watched two so far, and I found them very hopeful and uplifting. Definitely worth checking out.

[[La...]]

Lapis 

How have you been? Still having dizzy? Boaty? Unbalanced?

I’ve been thinking of you. Big hugs 🤗

[[La...]]

Lapis 

How have you been? Still having dizzy? Boaty? Unbalanced?

I’ve been thinking of you. Big hugs 🤗

 

Yeah, I'm still floaty-boaty, LadyDen, and I still tend to have a three-day pattern of two bad days, followed by one better day. I'm just watching one of The Steady Coach videos where she discusses ups and downs. Interesting!

 

Thanks for thinking of me, LadyDen. I hope you're doing okay. 

[[La...]]

You’re very welcome dear. I’m sorry that you still have this symptom. Mine is getting a pattern too. Some days it very mild. In a wave it increases. After going for a walk it increases then settles after resting. At night at bedtime it increases. At a little over 2 years off I can say that it is much better than last year but still very debilitating.

Yesterday I started a bad wave which began with those sudden inner head spinning episodes. The ones that feel like a seizure. One minute perfectly fine, the next spinning violently inside my head for a few seconds. I haven’t had one of those for months. They’re very scary! I thought to myself…what if I was walking on the sidewalk or driving when it happened. Wow scary thought. I was blessed to be sitting on my bed when it occurred. So I just fell backwards catching myself with my elbows. Like someone flipped a switch to turn off my brain for a few seconds.

Have you had this?

[[La...]]

Actually, no, I don't have spinning at all. Just the push-pull floaty-boaty type of disequilibrium. I've had lots of near-falls, but never a full fall -- thankfully.

[[La...]]

I haven’t had a fall either. Thankfully as well.

This has been one of my strangest but extremely scary symptoms. It was the first symptom I got at the end of my taper. Scary every time it happens. I have not found not one other person this is happening to. But, I know it is WD related. Almost all of my symptoms are vestibular ones. It is like someone picked me up and spun me around very fast then sat me down….few seconds later, it’s gone but it leaves me more unstable for awhile. Someone did tell me about a year ago that they had this too and it is a seizure. I’m very skeptical of that. But it does fit the description of one somewhat. There’s no jerking. I’m conscious when it happens. Just out of the blue sudden inside my head spinning for a few seconds and I can’t control my body. So I don’t know. When I’m well enough to ride in the car, I plan on getting an MRI. I have had these episodes since the end of my taper but they’ve been spaced out by months and they became milder in intensity except the one yesterday was like my acute days.

[[He...]]

So sorry that happened to you, Lady Den.  I have had that happen several times on this journey. It's just frightening. Hubby and I were out for a walk a few months ago and I had to sit down in the road all of a sudden.  Also, I have a friend who is tapering Klonopin (not on BB) and this happens to her too.  She had to slide to the ground getting out of her car yesterday.  NOT cool.  And it also starts bad waves for me too when it happens.  More twinning...

 

[[La...]]

Helen!!!! What? Wow!!! I’ve not had anybody else say they have this too. I’m not happy to hear you or your friend is having this but I’m so relieved that I’m not the only one. Thank you sooooooooooooo much for letting me know. Can you imagine this happening while driving? OMG! That is a scary thought! Just as you said, I’m fine one minute then out of the blue I’m spinning. Not my environment spinning but inside my head as if I’ve been spinning myself. It lasts a few seconds then gone. But same as you, it starts my huge series of waves. Twins!

Last year I asked around on this forum and nobody had this. There was one guy that replied and he said they’re seizures. Freaked me out at first. Then I quickly calmed down because if they are seizures then they’re very short and no jerking. Strangest seizures I’ve ever seen so I put that idea away. So I just call them vertigo attacks. Before this one, mine were mild…like baby ones. Are yours like that? Different intensities? Also I have them very spaced out…months before another one. Are you the same?

[[bo...]]

I'm so dysfunctional I did a small reduction and it send me to hell can't see sideways  or massive dizziness can't get out holding on by a threat i don't know how long  i can do this  hardy eating I'm alone  no energy  scared thought it was dissipating  but still here . what can I do also hormone time.

i have been doing this so long is there something or just coping skills?

[[He...]]

Helen!!!! What? Wow!!! I’ve not had anybody else say they have this too. I’m not happy to hear you or your friend is having this but I’m so relieved that I’m not the only one. Thank you sooooooooooooo much for letting me know. Can you imagine this happening while driving? OMG! That is a scary thought! Just as you said, I’m fine one minute then out of the blue I’m spinning. Not my environment spinning but inside my head as if I’ve been spinning myself. It lasts a few seconds then gone. But same as you, it starts my huge series of waves. Twins!

Last year I asked around on this forum and nobody had this. There was one guy that replied and he said they’re seizures. Freaked me out at first. Then I quickly calmed down because if they are seizures then they’re very short and no jerking. Strangest seizures I’ve ever seen so I put that idea away. So I just call them vertigo attacks. Before this one, mine were mild…like baby ones. Are yours like that? Different intensities? Also I have them very spaced out…months before another one. Are you the same?

 

LD, I'm not sure I can answer those questions. I had more of these when I was still on the meds but have had at least 2 since going off. One day I was folding clothes next to our guest bed and had to fall on to it.  It's not something that happens often, that's for sure. But I hate it.  I'm sorry you had that again.  My friend who also has this was put on K because she was naturally having seizures. So now she's fighting that double edged sword. She was recently given an MRI because she thought these freaky things were seizures but her neurologist said the MRI did not show that.  So, I assume they aren't actually seizures but something similar.  Yes, I'd so they have been different in intensity too.

[[Be...]]

LD, sorry that you're having those spinning episodes in your head.  If you get an MRI, hopefully the doc will do a functional fMRI to see the activity in your brain.  Sounds like some type of seizure event to me.  Last night in bed I felt like a gunshot blast went off in my head and it scared me to death.

[[bo...]]

I'm so dysfunctional I did a small reduction and it send me to hell can't see sideways  or massive dizziness can't get out holding on by a threat i don't know how long  i can do this  hardy eating I'm alone  no energy  scared thought it was dissipating  but still here . what can I do also hormone time.

i have been doing this so long is there something or just coping skills?

would appreciate any answer

[[La...]]

I'm so dysfunctional I did a small reduction and it send me to hell can't see sideways  or massive dizziness can't get out holding on by a threat i don't know how long  i can do this  hardy eating I'm alone  no energy  scared thought it was dissipating  but still here . what can I do also hormone time.

i have been doing this so long is there something or just coping skills?

would appreciate any answer

 

Hi bonty,

I noticed you mentioned hormones in your message, and in the reading I've done, it's mostly women who are affected by dizziness/disequilibrium. There are a number of research papers looking at the possible hormonal connection to dizziness. Do you feel that might be an issue for you? If so, maybe it's worth discussing it with your doctor.

 

As far as the benzo tapering goes, I'm not in a good position to give any guidance at all. I got off my medication a really long time ago, and I obviously can't say I did anything better or worse than anyone else. I just followed the Ashton Manual at the time, and I wasn't on BB. Perhaps you can check some other posts on BB to see what people are saying as far as all that goes. I'm sorry I can't be of more help at the moment.

[[La...]]

Thank you Becks. Wow that must have been scary. Have you had those before?

 

Bonty sorry you’re going through that. Coping skills is a must IMO. The more you can distract and self care the better to get through your day. I certainly had reduction symptoms after every 3-5 days each time I reduced. They lasted a couple of days. It is normal as the brain is adjusting to reduced amounts. Coupled with hormone issues it can make them a bit worse. Hope you feel better soon. Hugs 🤗

[[Be...]]

I have had those gunshot blasts go off a few times before.  It happens when I'm under a lot of stress and that's almost all the time. 

[[Ga...]]

Just an FYI here: I've watched a few more videos from "The Steady Coach", and she does some success story-type videos with people who have gotten better from chronic dizziness. I've watched two so far, and I found them very hopeful and uplifting. Definitely worth checking out.

 

Thank you for the link!

 

I'm watching her videos. I listened to some of the stories. I can relate.

 

Dizziness sure puts a damper. On life

 

 

[[bo...]]

Thank you Becks. Wow that must have been scary. Have you had those before?

 

Bonty sorry you’re going through that. Coping skills is a must IMO. The more you can distract and self care the better to get through your day. I certainly had reduction symptoms after every 3-5 days each time I reduced. They lasted a couple of days. It is normal as the brain is adjusting to reduced amounts. Coupled with hormone issues it can make them a bit worse. Hope you feel better soon. Hugs 🤗

I don't even know if its hormones but know  that it can make things worst, this tiny reduction in my opinion send me to hell x 20, going to the toilet in the middle of the night is torture Im falling  Im moving non stop, thank you hope its also short lived.

[[La...]]

Just an FYI here: I've watched a few more videos from "The Steady Coach", and she does some success story-type videos with people who have gotten better from chronic dizziness. I've watched two so far, and I found them very hopeful and uplifting. Definitely worth checking out.

 

Thank you for the link!

 

I'm watching her videos. I listened to some of the stories. I can relate.

 

Dizziness sure puts a damper. On life

 

Hi Gardenia,

You're welcome! I've watched quite a few of the videos now, and I've been reflecting quite a bit on the information there. For now, I will keep watching......

[[He...]]

Just an FYI here: I've watched a few more videos from "The Steady Coach", and she does some success story-type videos with people who have gotten better from chronic dizziness. I've watched two so far, and I found them very hopeful and uplifting. Definitely worth checking out.

 

Thank you for the link!

 

I'm watching her videos. I listened to some of the stories. I can relate.

 

Dizziness sure puts a damper. On life

 

Hi Gardenia,

You're welcome! I've watched quite a few of the videos now, and I've been reflecting quite a bit on the information there. For now, I will keep watching......

 

I need to watch the videos. I'm glad this thread keeps bring it up. Maybe today I'll watch one! Balance issues are my number one symptom now.  Thank you.

[[La...]]

Just an FYI here: I've watched a few more videos from "The Steady Coach", and she does some success story-type videos with people who have gotten better from chronic dizziness. I've watched two so far, and I found them very hopeful and uplifting. Definitely worth checking out.

 

Thank you for the link!

 

I'm watching her videos. I listened to some of the stories. I can relate.

 

Dizziness sure puts a damper. On life

 

Hi Gardenia,

You're welcome! I've watched quite a few of the videos now, and I've been reflecting quite a bit on the information there. For now, I will keep watching......

 

I need to watch the videos. I'm glad this thread keeps bring it up. Maybe today I'll watch one! Balance issues are my number one symptom now.  Thank you.

 

Yes, I've found them to be worthwhile to watch, Helen. There's some really good info there, as well as some uplifting recovery stories.

[[La...]]

Helen hopefully yours won’t last a long time as mine has. But I will say mine is significantly better. It was a slow…painfully slow improvement. Now it comes when I have a wave instead of all day. It’s still very strange to me when I’m outside to get fresh air and in the same day it was hard not to fall over earlier but now it’s gone or barely there. Especially in the evening….for a couple of hours poof gone. Those poof gone moments are very encouraging. It’s a comfort to me knowing if my brain can make it go away then it will do it again until it does it for good. 

I spent so many tiring months trying not to fall when just simply walking around. I remember being so tired with sore muscles every day by evening. Under normal circumstances you don’t think about how much work it is for muscles to assist being balanced. We don’t think of it because it’s part of normal functioning.

 

I’m telling you and Lapis right now…I have a GREAT respect now for equilibrium. Wow I never realized how important that is to the body. When it’s off it’s game….WOW! It took my whole life from me and still robbing me of it until it heals. I pray that all of us dizzy boaty unbalanced dames and dudes heal very soon. For you Lapis it’s been so very long. It makes me sad that you are still having this. Are you able to drive or ride in a car without any problems? Do you go places? When you do, how do you manage your symptoms?

[[La...]]

Hi LadyDen,

I really don't have a lot of positive things to say about my current situation, and I'd rather not talk about it too much. I have a concurrent musculoskeletal problem that makes everything much, much worse. Suffice it so say that my quality of life is very poor. I'm seeking help, but it's hard to get, under the circumstances.

 

And yes, of course, balance affects everything, and it's essential for normal human function. Most people have no clue about that and take it for granted. I understand that, though. No one can really imagine how it feels to have this type of sensation. It's best that they don't, though. They can enjoy their lives and be blissfully unaware. I dream of being in that state again.

[[La...]]

Lapis, I understand how you feel. It’s no problem if you don’t want to discuss it. I’m very sorry about what you’re going through. I wish I could give you a real hug right now. 

I feel the same as you about people taking it for granted. They don’t realize that they are. I mean I see people perfectly healthy and just lay around all day every day or they go outside and immediately find somewhere to sit down. Now that I’m going through this I’m like …wow how lazy they are! I wish I could go do anything again. But before all this I didn’t give my balance a thought either. Out of sight, out of mind, right?

I also dream every day of getting my equilibrium, balance and life back to normal. How blissful that will be. A huge blessing!

Big hugs to you, 🤗🌹

[[La...]]

Thanks so much, LD. Very kind of you. If I were okay, I'd be jumping back on one of my three bicycles and spending hours riding. I'd also walk for hours. And swim. And dance. And spend time with people. And enjoy being alive. It's been years since I did any of those things.

[[He...]]

Lapis and Lady Den,

 

If I could trust my balance every day, I'd ride my bike, play tennis, do standing yoga, go on hikes and maybe take some dance classes. 

 

Yesterday and the day before I had a window from my balance issues for the most part. It's amazing and exciting and I hope you both get that soon. Today seems ok so far.  I automatically get up and reach for the wall for support in the morning but didn't need to do that today.  I SOOO wish that for you all.  I will never, ever take balance for granted again either.  My balance issues started back in 2017 when I was still on the meds. I had to go home a day early from a trip to NYC to see Hamilton. My husband practically had to carry me through the airport.  It's come and gone since then but after that trip I was on my hands and knees crawling around the house for almost 3 weeks.  It got better for a while as I reduced meds and stopping drinking wine.  But it comes and goes now and can range from severe to practically non existent. It's just wild. 

 

Hugs to you both,

Helen