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

[[la...]]

Hello LadyDen

So nice of you to reply thank you  . Did you have it 24/7 until it started to lift?

I’m still tapering so I need to get off I think for this to start to settle.

Have you been able to work or socialise? I’m finding it increasingly difficult.

[[La...]]

Lane, I got that symptom at the end of my taper. It remained with me until now. For the first year it was pretty much constant. It was worse when I was standing. When I lay down it settled to a more bearable level. It’s still like that now. It gets worse at bedtime. To not let it get the best of me, at night I pretend I’m being rocked as a baby or on a boat enjoying the views.  You know the old saying “ if you can’t beat it then join it” ? That’s what I did. It really made it less scary. Seeing I had to deal with it for so long, I’m glad I made peace with it early on. We just can’t let these symptoms overtake us. They are just that….symptoms/ reactions from coming off the medications. Affects from down regulated gaba receptors. We can’t take pills that alter brain functions and expect no response. So accepting those responses are important. Unpleasant in extreme ways…yes they are! So I keep distracting until my injured brain does what it knows to do to repair itself. This symptom is known to hang around for awhile. Absolutely annoyingly debilitating as it is, I’m just staying positive while waiting for it to slowly go away. Because I know it will. When it does I’m throwing a party! 

Hang in there. Distract from it. Challenge it as best as you can by getting up often to walk around. Even if it’s not far, it adds up. But be careful not to overdo it.

[[Be...]]

Had the rolling over in bed vertigo last night.  Each time I kept rolling over, I'd get vertigo.  I had it before and it went away on its own.  It's from stress.

[[la...]]

LadyDen mine started quite mild but as I’ve tapered further down  it’s become quite severe. I don’t really get any relief from it now and I still have some months to taper before I’m off the Paxil. And then I start to taper the pregabalin.

Do you feel the Rocky movement more in your head than your body or both? I’ve also started to get the  force of pulling and pushing feeling  do you get this ?

I know what you mean about rocking as I constantly move my foot to mask the rocky feeling .

Are you left with any other symptoms?

[[La...]]

I feel the rocking boat coming from my head and my body follows. Hope that makes sense. Yes I’ve also had the pulling sensation as if a magnet is pulling me down to the floor. Extremely strong when standing or trying to walk. Settles a bit when lying down. This symptom also was paired up with diarrhea. It came in waves all day for over a year. Then started gradually improving very very slowly. Now I get it mildly only for an hour or two then it’s gone for a few days. Pops back in briefly and mild then gone again.

The other symptoms I have is ear ringing but it now varies in how loud it is. When I’m starting a wave, it gets louder. That’s how I know a wave is arriving. It used to be constantly loud. I also have muscle tightness episodes. These occur mostly in the morning and goes away within an hour or two. I don’t have them every morning anymore. They’re also much milder. Head pressure is milder and comes maybe once a week. Headaches once every two weeks or so but much more milder. The last two I had didn’t last the entire day as usual. Hurray! Sinus pressure/ pain. Pops in and out for short periods but much milder. It’s like a sinus headache but without infection. Itching fingers and toes at bedtime- milder and doesn’t last as long as before. Also they’re not every night anymore. Never occur during the day….always at night and only hands and feet. Weird! Nausea with tight belly occurs if I have a higher level wave. For example if my wave is on a scale of 4 or 5, I don’t get nauseated but I will have no appetite. If it’s a 6 or 7 then I’ll get nausea but no vomiting. I also have episodes of constipation that only last half the day. It shows up every couple of months.

I have a few other symptoms that are very very mild. They pop in for a short time during my waves then disappear.

[[la...]]

Thank you so much for your reply it is very reassuring LadyDen. I’m just so scared this symptom will be permanent. There seems to be quite a few on here that have had this symptom for a number of years.

I’ve had it a long time and still tapering off,  I worry this will cause further damage. 

[[La...]]

Lane I’ve had this a long time as well: rocking boat, pulling like a magnet with diarrhea, tinnitus, head pressure, tight muscles, mild vibrations, mild nausea and headaches off and on ( tension and sinus without any infection). All of these occur in waves but the boatiness and tinnitus are my regular symptoms. Meaning I constantly have the tinnitus but the boatiness is just now going almost completely away in my windows. Also my boatiness has improved as far as the intensity level. I’ve always had a pattern to my boatiness….worse in the mornings and nights. But nearly gone in the evenings. It took me this long 20 months to get to this point- actually if you count my last 3 months of my taper when it started then it’s 2 years. So yes, I agree that this is commonly a long very slow improving symptom for many. But I’m a witness that it does improve. As you’ve read through the boaty threads, I noticed that you have become frightened that it’s permanent. This symptom and intolerance of standing/sitting up has had me bedridden for sooooooooo long that I thought it would be permanent for me too. So I just continued to wait to observe improvements. At first, I noticed very small things like the intensity of it became less. Then I noticed that intensity not lasting as long as a month before. Then noticed it being nearly gone in my windows. Recently I have had a few times that it WAS gone for a very short period ( I’d say about 30 minutes) in my very good windows. I also spoke with my neurologist recently and he told me that seeing that it’s improving then he doesn’t see any reason why it wouldn’t continue to improve over time. He said he wouldn’t be surprised in about 6 months or so it will be gone. He told me the vestibular system has a bad record of healing so slowly because of all of the tiny delicately balanced parts. It doesn’t take very much to set off the balance of that system. Ours was hit over and over for a long time by way of benzo/z-drugs. They’re HIGHLY otoxic ( toxic to the ears/ vestibular). Therefore it makes sense that extent of injury will take awhile to heal completely. You are still tapering, correct? So I see why you’re concerned about further damage. I felt the same way! But I took reassurance in the fact that those hits were less impactful because of the reduced dosages. Unfortunately there’s no way of knowing so I didn’t dwell on it. I just kept my focus on reducing and getting off. That way I knew for sure that more damage wasn’t being done.

Might I suggest that you keep a boatiness/ dizziness log? It might help you see a pattern or recognize improvements. It certainly was helpful to me and BBs before us. Because the improvements are so small, this can provide some mental relief of worrying about it being permanent. A simple scale of 0-10 zero being not at all and 10 being the worst. Mornings, lunchtime, evening and nights make a note of them using the scale. Hope this goes away for us both very soon. Hang in there, Lane. Time is your best friend. Try to make it a point to get up to walk around several times a day. This increases circulation to the brain and helps it to compensate. For a very long time because of my inability to stand up, I couldn’t go for these walks. But as soon as I could , I did it even if it’s just 5 steps. In this recovery - as I always say- you have to push yourself but don’t shove! Know your limit.

Take care and virtual hugs 🤗

[[la...]]

Massive (((((bear hug))))) to you LadyDen for your detailed reply . I can’t express in words how grateful I am .

You are so reassuring and your words comfort me.

Yes I’m tapering the Paxil by .2mg every month. 8 dose reductions to go before I’m off. Then there’s the pregabalin. I’m on 14mg a day of this (some are on between 300/600mg a day). 

Symptoms are; raging tinnitus ( someone described theirs  like 100 cicadas. Spot on. Also hear church bells in my one ear. I know strange) . , floaty boat, anxiety,bouts of Akathisia,  hip and joint pain,  neck tightness, head pressure, muscle tics all over, low voltage electric current running through my body, hair breakage and poor condition ( had lovely hair before this started), agitated, dry eyes and sore, and other symptoms. And no windows.  I know I need to come off before I see any significant improvements.

Just have to keep reducing.

Did your symptoms ramp up while tapering ? Mine have.

 

You are doing fantastic!! It must be a great relief to see the light at the end of the tunnel. You give me such hope.

 

 

[[la...]]

I’d just like to add I’ve been to see 2 specialists, had tests and had two MRIs concerning floaty boat. Everything normal.

I had just the sensation of rocking initially that was felt mainly in my head. Recently, whilst decreasing  Paxil further the rocking seems to start in my head and extend down my legs. If I am moving and then stop, I feel like I am still moving., and it can feel like a ripple throughout my body. I get the magnet pulling and pushing and at times quite intense swaying in my legs.

I did record severity for a while in the beginning  and it averaged about a 5. However in recent weeks with the uptick in symptoms it’s now an  8. It is consistent every day and anxiety definitely makes it worse. Evenings can be better if I am lying down. 

[[La...]]

Lane yes my symptoms ramped up while tapering because it’s the brain’s reaction to taking away what it’s used to having. I used the analogy to understand this of weening a baby from its pacifier. The baby is strongly attached/ dependent upon the pacifier for many things ( comfort, calming down, going to sleep, etc). It will resist and throw a fit to not take it away.But it comes a time that it needs to let go of it. You can’t have a kid in kindergarten going to school sucking a pacifier, right? Besides this, prolonged pacifier sucking causes other developmental and dental issues. Some parents take the pacifier straight away ( cold turkey) and some do it gradually. IMO, I think gradually is the better option and less traumatizing to the child. It allows for the time to adjust to not having it. Doing it in reduced timeframes - allow child to have it for X amount of hours or only when going to sleep, etc. You give that child things to distract them when the pacifier time is not allowed. Coming off medications works the same way….cold turkey is very traumatizing and perhaps less successful in staying off IMO. I also feel it’s unnecessary to impart such torture of shock to an injured brain. A slow controlled consistent taper is proven to be more doable as Dr Ashton advised. Regardless of HOW you get off the medications, your brain IS going to react ( resist and throw a fit) by giving symptoms. This is NORMAL under the circumstances and to be expected. That’s why having a good plan which includes coping skills and distractions are so important. But you know what? It may take awhile but as time passes by, that child will forget all about that pacifier embracing it’s new big kid status. Have you ever seen a 3rd grader still crying for a pacifier that was taken from it as a toddler? Nope  So I look at my symptoms that way….over time as I heal those tantrums will be less intense and shorter until one day soon go on to be non-existence. I’ll embrace being healed ( just like the child embracing being a big kid). I hope that helped you 😊

Your specialist report….I’m not surprised by the testing coming back with normal results. This is very typical. They don’t have any test for this. NONE! But yet, our brains react with symptoms regardless of whether they can see it on a test or not. We simply are not making this up. So IMO don’t expect too much from doctors. Most don’t have a clue and will quickly categorize people going through this as nuts…sad but true. They’ll try to load you up with more damaging meds or increase what you’re taking.

I also after walking feel my symptoms increase immediately when I stop moving. This is very common. As if you got off a treadmill. Yep I’m the same. With time it will improve. Keep your mind distracted with things you enjoy each day. And you’re very welcome for my support. Virtual hugs to you too dear 🤗

[[la...]]

The analogy makes perfect sense LadyD and thank you. I was on 20mg Paxil for 14 years before tapering so Paxil is really letting me know it’s not going down without a fight .

The feeling of movement even when stationary is very pronounced now. This feeling happens even if I have been moving my foot for a few seconds to defer from the floaty boat feeling. As you say it’s like the feeling of when you come off a treadmill. Also getting some motion sickness if I’m sitting and moving my foot continuously . It’s like catch 22. I do it so I do t feel the floaty boat movement. But then the motion feeling can come on quite intense felt throughout my body, and makes me nauseous. Just like travel sickness.

Thank you so much for taking the time to reply to me it means so much. 😌

[[La...]]

You are very welcome. Hang in there. Don’t fixate on it. Do what you can when you can to ignore it. Or rather pretend it isn’t an issue. That will help put it in the background. Your brain knows you have to perform tasks. So it’s hard at work to repair the boaty dizziness as fast as possible. Our balance is highly important to prevent injury of the body. So believe me when I say it’s working on it big time! Navigate carefully. Distract yourself. Walk around when you can….often. For me, that helped to tell my brain to compensate. 

It might last you until your off all the medications or it might go away in a month. Or a year from now. Nobody knows. But, I saved myself much disappointment and heartbreak by not giving it a time to be gone. Might I suggest you take the same mentality. Because at the end of the day, you want it to improve then be gone….that’s what matters the most.

[[la...]]

Thank you I have found a friend that truly understands.

[[La...]]

Hi All,

I just came across this abstract on PubMed and thought it might be of interest. I'm not able to access the full paper, unfortunately -- just the abstract here:

 

"Treatment of Vestibular Disorders (Inner Ear Balance Problems): How Does Your Physical Therapist Treat Dizziness Related to Inner Ear Balance Problems?"

 

https://pubmed.ncbi.nlm.nih.gov/34775435/

 

 

Abstract

 

Dizziness is very common, but it is never normal. Dizziness can make performing daily activities, work, and walking difficult. Inner ear balance problems can make people dizzy when they turn their head, which can cause problems during walking and make people more likely to fall. Most of the time dizziness is not from a life-threatening disease. Often, dizziness is related to a problem of the vestibular (or inner ear balance) system. Vestibular disorders can be caused by infections in the ear, problems with the immune system, medications that harm the inner ear, and rarely from diabetes or stroke because of a lack of blood flow to the inner ear. Stress, poor sleep, migraine headaches, overdoing some activities, and feeling anxious or sad can increase symptoms of dizziness. Updated guidelines for the treatment of inner ear disorders are published in this issue of the Journal of Neurologic Physical Therapy. The guideline recommends which exercises are best to treat the dizziness and balance problems commonly seen with an inner ear problem.

 

Copyright © 2021 Academy of Neurologic Physical Therapy, APTA.

Conflict of interest statement

 

The authors declare no conflict of interest.

[[La...]]

Yes you have Lane.

Thank you Lapis. I was wondering where you disappeared to. How are you doing?

[[La...]]

Hi LadyDen,

It's been a really difficult time for me, and I haven't had much to say here on BB. Thanks for asking, though. 

[[La...]]

Lapis I totally understand how you feel. I’ve had a difficult time too. I’m freshly divorced, have very little family support and still bedridden for half the day with boatiness. I hope whatever you’re going through that it gets better soon. Just know you have a friend in me that cares. Sending you better days wishes. Thank you for all you do for us here on the dizzy thread.

Love and hugs ♥️🤗

[[He...]]

Lapis, Thank you for your contributions.  I'm sorry you are having a rough time.  I'll be thinking of you.

 

And of course, Lady Den my friend, I'm thinking of you too. We need to get off the boat.  Seriously.

[[La...]]

Thanks, LadyDen and HelenHMB. I appreciate it so much. Take care, both of you.

[[La...]]

Yezzzzzz please God get us off this boat! 🙏🙏🙏🙏🙏🙏🙏🙏

[[Ga...]]

Hi All,

I just came across this abstract on PubMed and thought it might be of interest. I'm not able to access the full paper, unfortunately -- just the abstract here:

 

"Treatment of Vestibular Disorders (Inner Ear Balance Problems): How Does Your Physical Therapist Treat Dizziness Related to Inner Ear Balance Problems?"

 

https://pubmed.ncbi.nlm.nih.gov/34775435/

 

 

Abstract

 

Dizziness is very common, but it is never normal. Dizziness can make performing daily activities, work, and walking difficult. Inner ear balance problems can make people dizzy when they turn their head, which can cause problems during walking and make people more likely to fall. Most of the time dizziness is not from a life-threatening disease. Often, dizziness is related to a problem of the vestibular (or inner ear balance) system. Vestibular disorders can be caused by infections in the ear, problems with the immune system, medications that harm the inner ear, and rarely from diabetes or stroke because of a lack of blood flow to the inner ear. Stress, poor sleep, migraine headaches, overdoing some activities, and feeling anxious or sad can increase symptoms of dizziness. Updated guidelines for the treatment of inner ear disorders are published in this issue of the Journal of Neurologic Physical Therapy. The guideline recommends which exercises are best to treat the dizziness and balance problems commonly seen with an inner ear problem.

 

Copyright © 2021 Academy of Neurologic Physical Therapy, APTA.

Conflict of interest statement

 

The authors declare no conflict of interest.

 

Thank you lapis

 

I fell in bathroom a couple of weeks ago

How I wish I could afford a physical therapist!

I think I turned my head to fast which made dizziness worse. I also have raging tinnitis.

[[La...]]

Hi Gardenia,

I'm really sorry to hear that you fell. Do you use a walker or cane to help you get around? If not, a two-wheeled walker could provide some stability. But I know how it is when the dizziness catches you off-guard. Very scary.

[[La...]]

Gardenia  I hope you are ok after that fall. I had to get a walker for a bit. Better safe than sorry. I agree with Lapis. I hope our dizzy/ boatiness goes away very soon. So debilitating!  It also keeps me exhausted. Lapis posted about why it makes us so tired. The muscles are overworked trying to keep us balanced. Vestibular system, eyes and muscles work together so it makes perfect sense. Please get a walker or a cane. When I got my walker, my son who’s a young adult said how cool it was. He was using it when he visited because he liked it so much. He gave me a good laugh. When I got my walker, it gave me renewed confidence and allowed me to get up more. There’s nothing like feeling more secure! Big hugs to you.

 

Lapis, are you doing better today? I’ve been thinking about you sweetheart. ❤️🌹

[[Ga...]]

Thank you lapis and ladyden 😊

I do have a walker. I'm also tired alot and wondered if it's because of trying so hard to balance with dizziness, etc

 

[[La...]]

Gardenia IMO tiredness/fatigue is also a symptom. And the brain trying to maintain balance tires out the muscles. So probably a combination. I’ve had the same tiredness off and on throughout my recovery. It does get better. Mine is much milder now as my balance and boatiness is improving. Hope that helps