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

[[En...]]

Hello everyone since the beginning of my taper, and now after I jumped 70 days ago, besides a few weeks, I feel very dizzy, my dizziness is my head spinning not the room, and the fatigue and inability to focus that it brings. It’s caused by my eyes, try to read a book or move my eyes up and down or from the left to the right causes this, like watching a movie with fast scenes and it also gives me nausea some times. When I go outside to try to take a walk its way worse because there are so many things going on that my eyes move more and so the dizziness gets bad, its not that I feel falling but I get this weird head feeling like my head is completely empty and exhausted. I had a vestibular test at the beginning of my taper because I was scared and it went ok. I’m trying to do some equilibrium exercises and some eyes exercises, is there something else I can do? Do you know usually how long it takes to get rid of this? Thanks

[[Ho...]]

Hello everyone since the beginning of my taper, and now after I jumped 70 days ago, besides a few weeks, I feel very dizzy, my dizziness is my head spinning not the room, and the fatigue and inability to focus that it brings. It’s caused by my eyes, try to read a book or move my eyes up and down or from the left to the right causes this, like watching a movie with fast scenes and it also gives me nausea some times. When I go outside to try to take a walk its way worse because there are so many things going on that my eyes move more and so the dizziness gets bad, its not that I feel falling but I get this weird head feeling like my head is completely empty and exhausted. I had a vestibular test at the beginning of my taper because I was scared and it went ok. I’m trying to do some equilibrium exercises and some eyes exercises, is there something else I can do? Do you know usually how long it takes to get rid of this? Thanks

 

I know exactly what you mean. The way you describe this is spot on with what I experience daily. I have tried a lot of things to try and make it better to include vestibular therapy. Sadly, none of it worked for me and in some cases it made it worse.

 

That is the sad thing about this affliction when you go to see a doctor to try to get some relief they just don’t have a clue. They try to treat whatever symptoms you may be having in a conventional manner but our brain injury is not conventional and therefore does not respond to these treatments. In my case they usually just throw their hands up at that point and give you look like sorry for your luck!

 

I hope we all get some relief soon!

[[La...]]

Hello everyone since the beginning of my taper, and now after I jumped 70 days ago, besides a few weeks, I feel very dizzy, my dizziness is my head spinning not the room, and the fatigue and inability to focus that it brings. It’s caused by my eyes, try to read a book or move my eyes up and down or from the left to the right causes this, like watching a movie with fast scenes and it also gives me nausea some times. When I go outside to try to take a walk its way worse because there are so many things going on that my eyes move more and so the dizziness gets bad, its not that I feel falling but I get this weird head feeling like my head is completely empty and exhausted. I had a vestibular test at the beginning of my taper because I was scared and it went ok. I’m trying to do some equilibrium exercises and some eyes exercises, is there something else I can do? Do you know usually how long it takes to get rid of this? Thanks

Hopper is right! They will encourage different exercises that don’t treat this because they’re ignorant of it. There’s no test that will say you’ve been injured by benzo. Sadly, only time will make it better. My advice is to be careful when navigating around. Keep getting up to walk carefully. A pair of shades might help when outside. When I have dizziness it’s also internal. This is a common symptom. I’m dealing with boatiness as my main symptom. Like I’m on a boat in wavy water. It has improved slowly. Congrats on your 70 days. Well done! Hopefully your dizziness will be short lived. Don’t be surprised if it goes away then pops back up. It might do that a few times before going completely away. Or it might just slowly gradually go away bit by bit. No one can tell you how long it will last. But from what I’ve read, it’s a symptom that likes to hang around. You can read back through this thread. 

Wishing you happy healing. Hugs

[[En...]]

Thank you guys for your answers.. I forgot to add that wearing my prescription glasses makes it worse? How is that even possible? Or walking and looking at shadows on the ground makes me very dizzy, or when an image on tv isn’t clear

[[Be...]]

When I was in tolerance w/d and was having dizzy spells and vertigo, I went to a Neurologist and he ran an ANA screening blood test and it came back positive with a high titer and told me I had Lupus.  Then I went to a Rheumatologist and she ran more blood tests and a few came back positive.  I was then diagnosed with Lupus.  I am convinced my APS Lupus is drug-induced from the damage from the benzo's and Z-drugs. 

[[En...]]

Hopper are you dizzy all the time or it’s because of your eyes movements? I read somewhere that in the second case, like I have, it’s about the nervous system and not the vestibular one. I read that everyone says it takes between 6 to 18 months for the nervous system to return to homeostasis

[[Ho...]]

Hopper are you dizzy all the time or it’s because of your eyes movements? I read somewhere that in the second case, like I have, it’s about the nervous system and not the vestibular one. I read that everyone says it takes between 6 to 18 months for the nervous system to return to homeostasis

 

I am this way all the time. Even when first waking up in the morning. If I lie flat on my back with my eyes closed, it feels like I am slowly tumbling backward or hanging upside down.  That being said, my eye movements do make it worse. Wearing my prescription glasses in the grocery store for example can make it 10X worse! Lights, movements etc. all make it worse. Sometimes even watching tv will do it. Like watching the credits roll after a movie then they suddenly stop…OMG that can be real bad. Like the earth is tilting.

 

6-18 months to return to normal would be great but I am at 36 months and some days it’s still as bad as when I was in acute WD.

 

Best of luck and I hopes yours clears up soon!

[[En...]]

I have the same thing with glasses, do you know why? Maybe because there is a visual overload? And instead not seeing perfectly make the eyes relax?

[[Ho...]]

When I’m having a bad day, anything that makes me focus my eyes (as I suspect my glasses do), makes it worse. I remove my glasses and “soften my gaze”. This seems to help. And yes, in my case sensory overload both visual and auditory revs everything up.

[[Ga...]]

Hopper are you dizzy all the time or it’s because of your eyes movements? I read somewhere that in the second case, like I have, it’s about the nervous system and not the vestibular one. I read that everyone says it takes between 6 to 18 months for the nervous system to return to homeostasis

 

I am this way all the time. Even when first waking up in the morning. If I lie flat on my back with my eyes closed, it feels like I am slowly tumbling backward or hanging upside down.  That being said, my eye movements do make it worse. Wearing my prescription glasses in the grocery store for example can make it 10X worse! Lights, movements etc. all make it worse. Sometimes even watching tv will do it. Like watching the credits roll after a movie then they suddenly stop…OMG that can be real bad. Like the earth is tilting.

 

6-18 months to return to normal would be great but I am at 36 months and some days it’s still as bad as when I was in acute WD.

 

Best of luck and I hopes yours clears up soon!

 

Hi hopper,

I see you were on Xanax 20 yrs also. I have alot of eye probs and dizziness too.

I was on 3 mg when I got c/t off.  In the am, I can't focus my eyes at first. It takes about 5 mins to be able to read my clock!

The dizziness comes and goes and tinnitis off the chart

[[Ho...]]

Hopper are you dizzy all the time or it’s because of your eyes movements? I read somewhere that in the second case, like I have, it’s about the nervous system and not the vestibular one. I read that everyone says it takes between 6 to 18 months for the nervous system to return to homeostasis

 

I am this way all the time. Even when first waking up in the morning. If I lie flat on my back with my eyes closed, it feels like I am slowly tumbling backward or hanging upside down.  That being said, my eye movements do make it worse. Wearing my prescription glasses in the grocery store for example can make it 10X worse! Lights, movements etc. all make it worse. Sometimes even watching tv will do it. Like watching the credits roll after a movie then they suddenly stop…OMG that can be real bad. Like the earth is tilting.

 

6-18 months to return to normal would be great but I am at 36 months and some days it’s still as bad as when I was in acute WD.

 

Best of luck and I hopes yours clears up soon!

 

Hi hopper,

I see you were on Xanax 20 yrs also. I have alot of eye probs and dizziness too.

I was on 3 mg when I got c/t off.  In the am, I can't focus my eyes at first. It takes about 5 mins to be able to read my clock!

The dizziness comes and goes and tinnitis off the chart

 

That about sums it up for me!  Sorry you are dealing with this also!

 

May the coming year bring us all some relief.

[[La...]]

Happy New Year To You All! May this year be better for us taking the dizzy or boaty away for good.

[[De...]]

How long does this horrible feeling last? I've been glued to my bed because being upright triggers panic attacks.

[[La...]]

DMW, nobody can answer that. It’s an individual thing. Wouldn’t that be great to have a set time. If we each knew it certainly would take away worries and make it easier to bear. All we can do is get through each day as it is only time will tell. I’m glad we have each other here on our journeys. Feel better soon. 

[[Be...]]

Hi everyone,

 

Hope you’re doing ok.  I had vestibular thingos going on in tolerance withdrawal & acute & then only occasionally since then.  How lucky I really saw I was. I’m 24 months post Jump tiday. I accidentally thumped my head quite savagely 11 days ago & been in a ghastly wave since. I can’t handle the slightest bit of stress.  The vestibular stuff is back - it feels wiser than Acute. It’s suede when I’m vertical & exercise flares it up hugely. Arghhhhh BWD is toppling me. Thanks for any encouragement.

[[La...]]

Hi everyone,

 

Hope you’re doing ok.  I had vestibular thingos going on in tolerance withdrawal & acute & then only occasionally since then.  How lucky I really saw I was. I’m 4 months post Jump tiday. I accidentally thumped my head quite savagely 11 days ago & been in a ghastly wave since. I can’t handle the slightest bit of stress.  The vestibular stuff is back - it feels wiser than Acute. It’s suede when I’m vertical & exercise flares it up hugely. Arghhhhh BWD is toppling me. Thanks for any encouragement.

 

Hi Bess,

Did you have yourself checked out by a doctor when you hit your head? Is it possible that you had a concussion? This flare-up of vestibular problems may not be due to the benzo, but instead, the hit to your head. Dizziness can certainly result from that. If you haven't seen anyone already, it would seem prudent to follow up with a doctor. There might be a specific treatment protocol to follow that could bring you some relief.

[[La...]]

Bess, I think you meant 24 months 

Anyway, congrats on being 24 months! You’ve done a great job so far. Don’t let a bump on the head take that away sweetie. I’m sorry that happened to you. Anything stressful can set us back. The further out you are, the more sensitive you become until you’re healed. It sounds like banging your head was a bit much for your still sensitive CNS. When having a setback, it’s normal to have some old symptoms pop back up. But, a setback is temporary. The dizziness will go back where it came from. Until then please be careful when walking around. If it went away before then it will again.    I know it’s scary when those symptoms come back but that’s how this goes. Unfortunately. Might I suggest you read again Parker’s what’s happening in the brain or Dr Ashton’s segment about setbacks?

I’ve also had my boatiness kick back up to a more intense level. It had settled down nicely ( not gone but most of the day it was mild). Since turning 19 months it’s now most of the day. So I also think you’re having some milestone symptoms too. Keep us posted please. I hope it goes away soon. Love and hugs 🤗

[[Be...]]

Hi everyone,

 

Hope you’re doing ok.  I had vestibular thingos going on in tolerance withdrawal & acute & then only occasionally since then.  How lucky I really saw I was. I’m 4 months post Jump tiday. I accidentally thumped my head quite savagely 11 days ago & been in a ghastly wave since. I can’t handle the slightest bit of stress.  The vestibular stuff is back - it feels wiser than Acute. It’s suede when I’m vertical & exercise flares it up hugely. Arghhhhh BWD is toppling me. Thanks for any encouragement.

 

Hi Bess,

Did you have yourself checked out by a doctor when you hit your head? Is it possible that you had a concussion? This flare-up of vestibular problems may not be due to the benzo, but instead, the hit to your head. Dizziness can certainly result from that. If you haven't seen anyone already, it would seem prudent to follow up with a doctor. There might be a specific treatment protocol to follow that could bring you some relief.

 

Hi, thanks so much. Yep I went to two sr’a. They says the symptoms don’t follow that of concussion.  The vestibular problems weeent there from the start after I got my head - they came on about 8 days later.  BWD is indeed a beast but don’t hit your head as it makes it all so much worse.  Thanks so

Much for your help. I hope you’re doing ok.

[[Be...]]

Bess, I think you meant 24 months 

Anyway, congrats on being 24 months! You’ve done a great job so far. Don’t let a bump on the head take that away sweetie. I’m sorry that happened to you. Anything stressful can set us back. The further out you are, the more sensitive you become until you’re healed. It sounds like banging your head was a bit much for your still sensitive CNS. When having a setback, it’s normal to have some old symptoms pop back up. But, a setback is temporary. The dizziness will go back where it came from. Until then please be careful when walking around. If it went away before then it will again.    I know it’s scary when those symptoms come back but that’s how this goes. Unfortunately. Might I suggest you read again Parker’s what’s happening in the brain or Dr Ashton’s segment about setbacks?

I’ve also had my boatiness kick back up to a more intense level. It had settled down nicely ( not gone but most of the day it was mild). Since turning 19 months it’s now most of the day. So I also think you’re having some milestone symptoms too. Keep us posted please. I hope it goes away soon. Love and hugs 🤗

 

Thanks so much - I really appreciate your help, kind words & encouragement- thank your  I hope you are doing ok lovely xxx

[[La...]]

Hi everyone,

 

Hope you’re doing ok.  I had vestibular thingos going on in tolerance withdrawal & acute & then only occasionally since then.  How lucky I really saw I was. I’m 4 months post Jump tiday. I accidentally thumped my head quite savagely 11 days ago & been in a ghastly wave since. I can’t handle the slightest bit of stress.  The vestibular stuff is back - it feels wiser than Acute. It’s suede when I’m vertical & exercise flares it up hugely. Arghhhhh BWD is toppling me. Thanks for any encouragement.

 

Hi Bess,

Did you have yourself checked out by a doctor when you hit your head? Is it possible that you had a concussion? This flare-up of vestibular problems may not be due to the benzo, but instead, the hit to your head. Dizziness can certainly result from that. If you haven't seen anyone already, it would seem prudent to follow up with a doctor. There might be a specific treatment protocol to follow that could bring you some relief.

 

Hi, thanks so much. Yep I went to two sr’a. They says the symptoms don’t follow that of concussion.  The vestibular problems weeent there from the start after I got my head - they came on about 8 days later.  BWD is indeed a beast but don’t hit your head as it makes it all so much worse.  Thanks so

Much for your help. I hope you’re doing ok.

 

Hi Bess,

I didn't quite understand some of what you wrote, like "two sr'a". It's not something I'm familiar with. Is that the short-form for something? So, to clarify, you have a certain kind of dizziness that isn't like concussion dizziness? Did they explain? And your dizziness didn't get worse until eight days after you hit your head?

[[Be...]]

Hi,

 

Is anyone still in this group?  I'm dealing with vestibular issues and looking to chat.  Thanks, Bob

[[La...]]

Hey Bob how are you? Glad to meet you. Yes I’m still here unfortunately but I’m making progress slowly. I’m ok with that.  What kind of vestibular issues are you having? Do you have support at home?

[[la...]]

Hi there I am new to this forum I am tapering from Paxil and down to 1.8mg and 14mg Lyrica which I'm holding.

I'm having lots of symptoms but the worst is floaty boat . It's a constant rocking sensation 24/7 whether lying down sitting standing etc it's better when I'm in the car. I've had this symptom for 18 mths and it seems to be getting worse with the tapering of Paxil  now I’m at a low dose.

Lapis are you any better as you have had this symptom a very long time?

How do you cope socially ?

I was given the Lyrica to help with Paxil withdrawal and like you I am worried I have done severe  damage  because both are known to affect the vestibular system.

Have you seen many heal from this symptom after 18 months of none stop rocking ?

Thank you for your support

[[la...]]

Also do you still have other WD symptoms?

[[La...]]

Hello Lane sorry to hear you’re still dealing with this symptom. I’m 19 1/2 months and still on the rocking boat. But this month it has improved as far as not being so intense constantly. As a matter of fact, it almost disappears now for short timespans. I’m so grateful because I also was concerned because it’s been so long. I have had it completely disappear in April and May - not continuously but for most of the day nearly every day then return in the late evenings. Unfortunately in June it upticked again and slowly getting better.

I know you asked this to Lapis but I wanted to share my experience. It does get better although it might take awhile yet. IMO, you’ve had more than one medication hit the vestibular system as you said, so it needs time to repair. This symptom is so debilitating that we want to know if it will leave and when. Unfortunately there’s no answer to when. Best wishes to you.