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

[[La...]]

Lapis I’m sad to hear this for you. I want you to know whether you post or don’t post my heart is with you. You’ve been such a loving friend to me this whole time. I appreciate you so much! Please know that I love you! ❤️💗💕🌹

 

Lovely of you to say, LadyDen. Thank you so much for the kind words.

[[Ka...]]

Hi LadyDen

 

I really appreciate your reply.

 

It's so helpful to have metaphors for our healing from BIND and the random or non linear patterns we experience. I'm glad you were reassured by Dr. Jenn Leigh that you are not getting worse.

 

In my case I don't have new or shifting symptoms so the "shifting to repair a new area of the CNS" that Dr. Leigh talks about doesn't rresonate so much for me. I have had slow and steady intensification of the same core group of physical symptoms for almost 3 years off the benzo. That's a long time for symptoms to keep intensifying. I'm looking for a theory or a metaphor for why sensations get incrementally stronger month after month instead of leveling out or lessening. It would help me so much if I could envision this in some way as an active healing process.

 

I hope you continue to see improvements with all your symptoms. I'm inspired by your recent post re: your plans to try sitting up more during the day. I hope you will discover you have more tolerance for the upright position and activities out of bed. I've started walking around the house for 5 minutes at a time and it's challenging. A year ago I was walking 30 mins at a time and I would love to get back to this level of ability.

 

[[La...]]

Thank you Kate. I also was walking more just a month ago and was just about to start walking the sidewalks when I was slammed again back in bed. It’s unreal how this goes so unlinear. My sitting up hasn’t improved much. But I’m going to keep trying different things until I’m successful.

How have you been?

 

[[Mi...]]

Hello boaty dizzy people.

 

You guys are in my thoughts & prayers.

 

I'm continuing to do better. I still have residual symptoms. Mostly boatiness/wobblyness here & there. It's not constant. Usually in the evening, or if I do too much. It's been manageable.

 

I did have issues about 3 months ago where the boatiness/dizziness flared up enough to make it rough falling asleep. I had WAAYY over did it & had a lot of stress back then & things got hairy for a bit there. Lady Den was so kind to give me really great advice. Thank you Lady Den. Thankfully it was only at it's worse for a week.

 

Anyway, I stopped on here today to talk about glasses, contacts, reading glasses. ... & darkness.

 

I have a question & I want to maybe shed some light on some things. I figured out &  it has become more evident as symptoms have slowly pared back over time.

 

I wear contacts most days & they are not for reading really. I'm 52 & I use reading glasses. I have found out that when I'm busy in the kitchen for example, if I'm walking around and taking my glasses on & off  repeatedly to like do something close up, like frost a cookie & then remove the glasses to walk around...that change in lenses, from removing & putting on the glasses, can make me woozy/wobbly. I know for a normal person it can be a challenge going back & forth. For instance my husband tells me how the change from having the reading glasses on, to no reading glasses knocks him off kilter for a brief moment. ...What am I doing to my healing eye/brain connection when I'm constantly taking these reading glasses on & off all day long? If I'm in the kitchen for an hour or more doing this, what kind of a workout am I putting my healing brain through?

 

I can read ok without the reading glasses. I just have to bring things closer to my face, but if just not using reading glasses at all helps reduce this boaty crap then I'm all for it. I'll just put the reading glasses aside until I'm fully healed.

 

I also can really feel my brain working hard when the sun goes down & if we walk outside at night I can get boaty, where as during the day walking outside I am usually symptom free.

 

Has anyone noticed a decrease in symptoms if they stay with just one set of lenses/glasses? Is this common sense & I should have figured this out a long time ago? How bout when it's dark compared to light?

 

** also in the evening I take out my contacts & put on my regular prescription glasses... yet another different set of lenses.

 

Any comments or input on this?

[[La...]]

Hello boaty dizzy people.

 

You guys are in my thoughts & prayers.

 

I'm continuing to do better. I still have residual symptoms. Mostly boatiness/wobblyness here & there. It's not constant. Usually in the evening, or if I do too much. It's been manageable.

 

I did have issues about 3 months ago where the boatiness/dizziness flared up enough to make it rough falling asleep. I had WAAYY over did it & had a lot of stress back then & things got hairy for a bit there. Lady Den was so kind to give me really great advice. Thank you Lady Den. Thankfully it was only at it's worse for a week.

 

Anyway, I stopped on here today to talk about glasses, contacts, reading glasses. ... & darkness.

 

I have a question & I want to maybe shed some light on some things. I figured out &  it has become more evident as symptoms have slowly pared back over time.

 

I wear contacts most days & they are not for reading really. I'm 52 & I use reading glasses. I have found out that when I'm busy in the kitchen for example, if I'm walking around and taking my glasses on & off  repeatedly to like do something close up, like frost a cookie & then remove the glasses to walk around...that change in lenses, from removing & putting on the glasses, can make me woozy/wobbly. I know for a normal person it can be a challenge going back & forth. For instance my husband tells me how the change from having the reading glasses on, to no reading glasses knocks him off kilter for a brief moment. ...What am I doing to my healing eye/brain connection when I'm constantly taking these reading glasses on & off all day long? If I'm in the kitchen for an hour or more doing this, what kind of a workout am I putting my healing brain through?

 

I can read ok without the reading glasses. I just have to bring things closer to my face, but if just not using reading glasses at all helps reduce this boaty crap then I'm all for it. I'll just put the reading glasses aside until I'm fully healed.

 

I also can really feel my brain working hard when the sun goes down & if we walk outside at night I can get boaty, where as during the day walking outside I am usually symptom free.

 

Has anyone noticed a decrease in symptoms if they stay with just one set of lenses/glasses? Is this common sense & I should have figured this out a long time ago? How bout when it's dark compared to light?

 

** also in the evening I take out my contacts & put on my regular prescription glasses... yet another different set of lenses.

 

Any comments or input on this?

 

Hi Miss Fortitude,

I have lots to say on this one! Thanks for writing about it, since I do think it's important. Vision is one of the three systems that contributes to our overall balance, with the other two being proprioception and the vestibular system. All the systems must be giving the same message to the brain at the same time for balance to be normal.

 

I, too, wear contact lenses for distance vision, and I put my reading glasses (+1.50) over top of them in order to read or work at my computer, as I am doing now. Other people might choose to get "progressive" or "bifocal" contact lenses or glasses that try to correct two or three different visual areas depending on what part of the lens is in use. I even tried those years ago, and it just seemed to make my dizziness much worse. As a matter of fact, it wasn't clear whether my dizziness was initially caused by trying progressive lenses or if it was something else. I had to get my eyes thoroughly checked out (optometrist, then opthalmologist, then neuro-opthalmologist) to be sure that nothing was wrong with my eyes. In the end, nothing was wrong with my eyes. I've continued to get my annual eye check-up, and my eyes are still in good shape.

 

I must say, though, that it makes a lot of sense that there is an adjustment period for the eyes and brain when we switch back and forth between close up and distance vision correction (e.g. reading glasses over contacts) as we get older. I'm in my late 50s, so not much older than you, and I just think it makes sense that we need a second or two to adjust.

 

Having said that, I do think it's important to see your eye doctor if you have questions about your vision and about how to cover all the bases. I've been using reading glasses over my distance contact lenses for years, and I will stick with it, because I just think that the bifocal or progressive lenses might be asking too much of a brain that's dealing with balance issues. I've discussed this with my optometrist, and he agrees that it's a good plan for me.

 

[[Mi...]]

Thank you for your reply Lapis.

 

Like you, I am steering clear of the progressive contact lenses for that very reason. Also, like you I just use the reading glasses over my contacts (which are for distance.)

 

My husband, who is "normal" (lol sort of)... anyway he's not in withdrawal,  just told me he quit wearing his cheaters when he walks around the kitchen. He'll read a recipe and then take the reading glasses off & set them down because he doesn't like walking around with them because it's too blurry and not comfortable. I can really amp up my boaty symptom, or kick in my boaty symptom on a day when I feel great with my "glasses shenanigans".

 

I am noticing the last month or so that I can tell my eyes/brain connection are really trying to heal. I can tell when I go from daylight to a dark room, or if I walk at night, I'm less wobbly where there is street light versus darkness.

 

Like you said, I think our eyes as one of the sensory systems that is affected in withdrawal, and with balance, it plays a huge role. Now a days instead of occasionally getting DR (derealizaton) I sometimes get like a slight "numb feeling" .. It feels like what I'm seeing is trying to match what I'm hearing, and trying to balance my body. Maybe DR is the extreme work of our injured CNS trying to align all these things & it gives us that feeling of spacey numbness or even benzo flu???. .. idk. It's just my theory.

 

Of course a lack of good sleep & stress can amp things up even more & can result in a challenging day as well.

 

Thanks

-Fortitude

 

 

[[La...]]

Hi Miss Fortitude,

Light definitely plays a role in our vision, so it makes sense that you're less wobbly when there's better light during your evening or nighttime walk.

 

I have a little story that's connected to this topic: I had a friend (who, by the way, had no balance issues at all) over to my place a number of years ago, and I remember that she had just gotten her new bifocal glasses. As she was coming up the stairs, she apparently tripped up the stairs and almost fell over. She said she was looking down at the step in front of her, but as she looked down, she was looking through the part of the glasses that was supposed to be used for reading, and her vision of the step was blurry. It further convinced me that I had made the right decision about not getting bifocals. 

[[La...]]

Hi Miss and Lapis.

I’d like to add my two cents……

Miss, firstly you’re very welcome for my healing you when your boatiness flared up. I’m so grateful it was short lived…I knew it would be because you’ve already had such progress in your healing. I’m so glad to hear your report that it was only about a week then fizzled back down. Awesome! Way to go for being brave!

As far as our eyes in this, what I’ve learned is that the eyes carry much of a heavy burden in our balance. With what has happened to us, no wonder our eyes are not excused from being affected too. I’ve had eye issues as well. I have floaters, flashes of light as if I looked at something bright, blurry vision, fuzzy vision, tired eyes, watery eyes, burning eyes, etc. All of those take turns popping up at random for short visits. I wear glasses mostly since I’ve been going through this. I take them off while laying down because my iPad is closer so I can see very well without them. But when I’m reading something when sitting up I have to have them on.

Now let me tell you what I discovered not too long ago….I was doing something important online with a full bladder. But I couldn’t really stop what I was working on so I held it in. Lol well you know Mother Nature will be the winner in that battle….you WILL go to the bathroom very soon once you feel it. So I jumped up because now I’m in a race to reach me toilet man. I didn’t put on my glasses as usual and noticed that I immediately became more boaty. It really surprised me! I finished my business then put on my glasses….poof the boatiness settled down! I have never noticed that before. At night if I forget to empty my bladder before bed, not long as I’m so comfortable, I have to go potty. Every time I don’t put on my glasses to walk in the dark, I’m very boaty. Meaning MORE than usual. It takes a lot of work to balance us when we’re in the dark. So Miss I’m not surprised by what you said about going out at night. I also even with glasses on wanted to go see the stars one night…wow I was soooooooo boaty after going outside. Before I went out there, my boatiness was very mild…which is why I decided to take advantage of the moment. So, yes there is a connection there.

[[Mi...]]

Lady Den, Lapis, and everyone,

 

When I had a rough flare of symptoms 2 years ago from the flu shot i got hit with the dizzy/boaty bad. It was fall so the sun was going down earlier & if I wanted to go outside after hubby came home from work  it was dark out. I remember holding onto him for 90% of it. That was before I got a cane.

 

Since it's been a while since I've had these symptoms 24/7, I can more easily tell what makes them worse.

 

- stress

-lack of sleep

-darkness or low lighting - if I'm busy and don't get to turning the lights on after dusk, and the room is dark, when I finally turn on the lights my brain instantly feels 100x better. It's like a soothing elixir as the light takes the strain off of my brain & vestibular system.

-switching glasses shenanigans.

 

Lady Den, Like you said about putting your glasses back on in the dark after you hurried out of bed because "nature is calling". Lack of light combined with lack of your glasses is too much for the eyes/brain.

 

I know this is kind of common sense, but it's important I remind myself of this so I don't get too down or hard on myself if things flare up.

 

Even at dusk when the sun is below the horizon & and its just a tiny light out and not dark yet... that dusk makes me feel weird. It's like that early evening "blue hue".  I've had our white picket fence mess with me to different extremes depending out i feel that day. I've had the concrete on the driveway & the sidewalk mess with me to the point where I'll only walk in the grass.

 

It's all just a reminder that our systems are over taxed from this injury & to cut ourselves some slack. In flares I still can woozy in the car (just as a passenger) , & sometimes I have to take a few days to heal and just stay around the house/yard and avoid the car. That still happens sometimes to this day. It ebbs & flows.

 

It's a slow process. Our brains take a long time to heal from this. As you may know Dr Jennifer Leigh took a few years to get beyond the boaty/dizzy/balance issues. She was bed bound too sometimes.. but she finally made it.

 

Let's stay strong everyone. We'll get there.

 

 

 

[[La...]]

Thank you Miss. You’re right that these symptoms ebbs and flows waxes and wanes with a mind of their own. I spoke with Jennifer Leigh not long ago. I did ask her about my extremely sensitive vestibular system. She told me she was boaty nd unbalanced for quite awhile. It waxed and waned. But hers wasn’t as bad as mine because she said she could ride in a car, do gardening and wasn’t bedridden long with hers. She reassured me that even though mine is bad and lasting so long, it still will heal ( go away). Evidence of that is the big improvements I’ve already had. From completely bedridden to walking around whenever I’d like and can take care of myself. Still can’t drive or ride in a car very well. Still have unbalance attacks and boatiness in varying intensities BUT they are undeniably better. Meaning milder, not lasting in higher intensity too long and even started to briefly disappear every now and then.

It fills my heart with joy being confident that it will completely be gone for good one day soon. It’s been a long tedious frustratingly exhausting upsetting journey. I’m so looking forward to closing this chapter. To wake up symptoms and waves free each morning thanking God Almighty that I can now live my life here in normalcy. Wow what a beautiful picture that is. I can’t wait!!!

Thank you for sharing Miss. you made me smile at your positive outlook. I needed that today.

🌹🌹🌹

[[Li...]]

Hi boat group,

I am now two weeks off zopiclone and I feel still quite lightheaded during the day.

Is there something I can do against that feeling? Sitting on my bench feels best…

Jerry

[[La...]]

Hi jerry

Unfortunately the answer to your question is not much except rest. It’s part of this healing. It’s good that you can sit up on a bench. Try to do your best to keep walking and sitting up. It will settle down soon. It may come and go. Some days it might be more intense than others. That’s just the way it is. Hopefully yours won’t last too long. Hang in there and make sure you rest your healing brain during the day.

[[hl...]]

I’ve been feeling so dizzy for so long. I don’t even know if it’s dizziness, it feels like brain damage. I feel like I’m on a boat. By head and neck are physically swaying back and forth. I feel concussed and drunk. This must be brain damage.

 

5 months since my last dose of clonazapam

[[Li...]]

Hi jerry

Unfortunately the answer to your question is not much except rest. It’s part of this healing. It’s good that you can sit up on a bench. Try to do your best to keep walking and sitting up. It will settle down soon. It may come and go. Some days it might be more intense than others. That’s just the way it is. Hopefully yours won’t last too long. Hang in there and make sure you rest your healing brain during the day.

 

Today is another day that I feel lightheaded. I have planned to go swimming in the afternoon, when my lightheadedness is less severe. Luckily I have slept fine last night. Watching some tv now…

 

[[La...]]

Hi jerry

Unfortunately the answer to your question is not much except rest. It’s part of this healing. It’s good that you can sit up on a bench. Try to do your best to keep walking and sitting up. It will settle down soon. It may come and go. Some days it might be more intense than others. That’s just the way it is. Hopefully yours won’t last too long. Hang in there and make sure you rest your healing brain during the day.

 

Today is another day that I feel lightheaded. I have planned to go swimming in the afternoon, when my lightheadedness is less severe. Luckily I have slept fine last night. Watching some tv now…

 

Hi Lightspacer,

I'm curious to know if your dizziness changes while you're swimming. Do you still feel it while you're in the water? For some people, certain kinds of movement seem to eliminate the sensation of dizziness -- for example, riding in a car. Either way, it's great that you can stay active. Exercise is good for both the body and the brain. 

[[Li...]]

Hi jerry

Unfortunately the answer to your question is not much except rest. It’s part of this healing. It’s good that you can sit up on a bench. Try to do your best to keep walking and sitting up. It will settle down soon. It may come and go. Some days it might be more intense than others. That’s just the way it is. Hopefully yours won’t last too long. Hang in there and make sure you rest your healing brain during the day.

 

Today is another day that I feel lightheaded. I have planned to go swimming in the afternoon, when my lightheadedness is less severe. Luckily I have slept fine last night. Watching some tv now…

 

Hi Lightspacer,

I'm curious to know if your dizziness changes while you're swimming. Do you still feel it while you're in the water? For some people, certain kinds of movement seem to eliminate the sensation of dizziness -- for example, riding in a car. Either way, it's great that you can stay active. Exercise is good for both the body and the brain. 

 

Yes swimming helps a bit. Today I had a tough time in the pool. Because of the holidays it was really crowded in the pool itself and also in the changing room. I thought I had forgotten to take my medication this morning. But  when I came home I saw that I had indeed taken my medication luckily. But I was more lightheaded than normal today.    p.s.  No, inside the pool, when I am swimming, I don’t feel it…

Jerry

[[La...]]

Hi jerry

Unfortunately the answer to your question is not much except rest. It’s part of this healing. It’s good that you can sit up on a bench. Try to do your best to keep walking and sitting up. It will settle down soon. It may come and go. Some days it might be more intense than others. That’s just the way it is. Hopefully yours won’t last too long. Hang in there and make sure you rest your healing brain during the day.

 

Today is another day that I feel lightheaded. I have planned to go swimming in the afternoon, when my lightheadedness is less severe. Luckily I have slept fine last night. Watching some tv now…

 

Hi Lightspacer,

I'm curious to know if your dizziness changes while you're swimming. Do you still feel it while you're in the water? For some people, certain kinds of movement seem to eliminate the sensation of dizziness -- for example, riding in a car. Either way, it's great that you can stay active. Exercise is good for both the body and the brain. 

 

Yes swimming helps a bit. Today I had a tough time in the pool. Because of the holidays it was really crowded in the pool itself and also in the changing room. I thought I had forgotten to take my medication this morning. But  when I came home I saw that I had indeed taken my medication luckily. But I was more lightheaded than normal today.    p.s.  No, inside the pool, when I am swimming, I don’t feel it…

Jerry

 

That's amazing, Jerry, that you can swim and that the dizziness is essentially erased while you're doing it. I'm sure the coming/going/showering in the change room aren't easy, but still, it's fantastic that you can do that exercise. Hopefully, it will give you a better sense of well-being and, perhaps, a better quality of sleep. I always slept better when I was doing my regular swimming.

[[Li...]]

Hi jerry

Unfortunately the answer to your question is not much except rest. It’s part of this healing. It’s good that you can sit up on a bench. Try to do your best to keep walking and sitting up. It will settle down soon. It may come and go. Some days it might be more intense than others. That’s just the way it is. Hopefully yours won’t last too long. Hang in there and make sure you rest your healing brain during the day.

 

Today is another day that I feel lightheaded. I have planned to go swimming in the afternoon, when my lightheadedness is less severe. Luckily I have slept fine last night. Watching some tv now…

 

Hi Lightspacer,

I'm curious to know if your dizziness changes while you're swimming. Do you still feel it while you're in the water? For some people, certain kinds of movement seem to eliminate the sensation of dizziness -- for example, riding in a car. Either way, it's great that you can stay active. Exercise is good for both the body and the brain. 

 

Yes swimming helps a bit. Today I had a tough time in the pool. Because of the holidays it was really crowded in the pool itself and also in the changing room. I thought I had forgotten to take my medication this morning. But  when I came home I saw that I had indeed taken my medication luckily. But I was more lightheaded than normal today.    p.s.  No, inside the pool, when I am swimming, I don’t feel it…

Jerry

 

That's amazing, Jerry, that you can swim and that the dizziness is essentially erased while you're doing it. I'm sure the coming/going/showering in the change room aren't easy, but still, it's fantastic that you can do that exercise. Hopefully, it will give you a better sense of well-being and, perhaps, a better quality of sleep. I always slept better when I was doing my regular swimming.

 

Ha Lapis,

Luckily it is only that crowded in the holidays. I think my dizziness of today is related to eating peppery peanuts yesterday. Katjang Pedis ones. Swimming helps me to feel less groggy, something I have each day when I wake  up, which I relate to the clozapine and citalopram combination which I use, I am planning to taper the citalopram next year. But first take my time for the recent finished zopiclone taper. Why have you stopped swimming while it helped you so much?

Huggggs,

Jerry 

[[La...]]

Hi Lightspacer,

I had to stop due to an injury which was eventually made much, much worse due to the medications, withdrawal and dizziness. I can't discuss it without getting very upset, but suffice it to say that swimming isn't the only thing that I had to give up.

 

Keep up the good work and keep on swimming!

 

[[Ho...]]

Hey dizzy Gang - Just checking in. 4 years off the poison this month and in a big wave!  Heart palpitations (PACs, PVCs), chest pain and dizzy / lightheadedness are very acute right now. Hard to believe it’s been 48 months and I’m still so sick. It’s crushing!

 

Best wishes and Happy New Year to you all!

[[La...]]

Am so sorry Hopper! That means your big healing is happening! Hang in there!

[[Ga...]]

Please dizzy, off balance ppl, be careful. I fell a month ago, spent 14 hrs in waiting room, broken leg.

2 weeks in hospital now on week 2 in a rehab. I had EKG, CT scan, MRI and blood work done, all results normal

Then why did I fall!!

I have fell here and there for 5 yrs

Be careful, this has been devastating

I was on Xanax 20 yrs....

[[Ho...]]

Anybody just feel like their head isn’t attached to their body anymore? Ugh!

[[La...]]

:smitten: :smitten:

 

Just wanted to give some love. Hang in there

[[Ho...]]

Thanks LadyDen! Another one of those days… Just moving my eyes to the extreme left or right makes the whole world spin off axis! UGH!

 

Hope you are having a better day! 😊