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

[[Ch...]]

Lapis,

I’m not sure why the doctor chose clonazepam over Valium actually. It wouldn’t hurt to discuss it with her or consider it seeing how rough the clonazepam is treating me.

 

Thank you very much! I hope your dizziness goes away soon as well.

I’ve actually been holding for a while since I’ve developed my third large ovarian cyst and I’ve had bronchitis lately too. (Not to mention my wisdom teeth need removed soon.  ) It’s a lot to deal with all at the same time and I thought it would be best if I didn’t put myself through everything at once. I’m not sure when I’ll try cutting again, but it will probably have to be when other things have calmed down.

 

Yong,

I’ve also been having dizziness along with brain fog and stomach issues. I don’t know if they’re related, but it’s possible.

[[La...]]

Thank you so much for this post! I’ve been experiencing this for a while, but wasn’t sure how to put it into words. It’s not a constant state. Sometimes I feel like I’m in that scene from the Matrix. It’s weird because I snowboard a lot and I don’t experience this while snowboarding. Even though it requires more balancing then just walking around.

 

It's good that you have that snowboarding experience, because you probably have certain instincts and musculature that will serve you well. Stay strong!

[[Ap...]]

Thank you so much for this post! I’ve been experiencing this for a while, but wasn’t sure how to put it into words. It’s not a constant state. Sometimes I feel like I’m in that scene from the Matrix. It’s weird because I snowboard a lot and I don’t experience this while snowboarding. Even though it requires more balancing then just walking around.

 

It's good that you have that snowboarding experience, because you probably have certain instincts and musculature that will serve you well. Stay strong!

 

Muscle memory, you’re right! It’s basically the only exercise I get and only on weekends.

[[La...]]

Still, that muscle memory and balance are likely invaluable in facing something like this. Staying upright on a snowboard involves subtle muscle movements that prevent you from falling. That's a darn good thing!

[[jo...]]

So, I was watching this Vimeo and thinking, surely someone has already considered dive therapy as a potential treatment for people like us who suffer from all these debilitating inner ear/brain sxs, or maybe not? Listen at 1:50 as he describes what happens to patients at 66 ft. A big part of our sxs have to do with pressure, right? Could it possibly be of benefit for us? Do any of you know?

 

https://vimeo.com/180656320

[[Ir...]]

still complicate for Lyme, thanks for asking... i'm in a bad shape this week, hope this will leave soon.

 

Hi, can we private message? I’d like to discuss Lyme with you. I have a complex issue with it also

[[Ir...]]

Is it reasonable to state that our rocking/swaying on a boat

 

1. Gets better in passive motion. Like a car or train

2. Gets worse after eating?

 

Anyone agree or disagree with that?

 

Also, has anyone travelled with this? Like a boat or a plane? I’m fearful of rebound afterwards but I haven’t travelled in 2 years due to it. Just incase it morphs into a beast. I’m normally a 1/2 on a scale

[[La...]]

Hi IrishMonkey,

In my experience, I do find that the sensation changes when I'm in a moving car. But it's a temporary thing. It makes sense to me, though, because it's the opposite of motion sickness. The movement of the car cancels out the sensation of disequilibrium, but for a well person, car movement may CAUSE disequilibrium and/or nausea. It has to do with vision, proprioception and the vestibular system, and whether they're in sync.

 

As far as eating goes, no, I don't find it makes any difference whatsoever.

 

 

[[Ir...]]

Thank you for that feedback Lapis!

[[La...]]

You're welcome, IrishMonkey. Hopefully, others will chime in as well with their experiences. I think the car experience is fairly common. Others have mentioned it here before.

[Guest [...]]

Is it reasonable to state that our rocking/swaying on a boat

 

1. Gets better in passive motion. Like a car or train

2. Gets worse after eating?

 

Anyone agree or disagree with that?

 

Also, has anyone travelled with this? Like a boat or a plane? I’m fearful of rebound afterwards but I haven’t travelled in 2 years due to it. Just incase it morphs into a beast. I’m normally a 1/2 on a scale

 

 

 

 

Hi Irishmonkey!I find that driving is pretty much a no dizzy event for me,but I think it is because I am not moving my head up and down like when walking and moving around.I am so thankful that I have been able to drive this entire time while sick.I really love to drive,so I would have been especially down to not have been able to during all this.Even though I used the drive thrus mostly!

 

I find that I do sometimes get more dizzy after eating for a little while,but this also happens while making dinner,so it could still be a head movement trigger that gets mine going.When I don't move my head around,my vision and balance seem a little more stable.It's when I start moving around the push pull stuff kicks in.

 

I hope you are a fast healer through all this Irishmonkey!

 

 

Lapis,how are you doing today?

[[La...]]

Hi 2200,

I'm hanging in, kinda, sorta, if you know what I mean! I had three 9s on the dizziness scale during this last week, so I feel like I've been hit by a tsunami. Thankfully, I'm less dizzy today (a 7), but my body and soul feel battered. I'm digging deep here, but my spirit is failing. I can hardly walk at all.

 

I'm really hoping the anti-inflammatory that I'm taking for my fractured foot isn't playing a role. It's certainly making my tinnitus worse, as expected, and it's quite possible that my increased dizziness is tied to hormonal changes. I wish I knew. In the meantime, I'm still in a lot of pain with the verrrry slowwwww healing fracture and all the compensatory pain that comes with it in the rest of my body. Ugh. Very ugh.

 

And you? How are you holding up? 

[Guest [...]]

Hi 2200,

I'm hanging in, kinda, sorta, if you know what I mean! I had three 9s on the dizziness scale during this last week, so I feel like I've been hit by a tsunami. Thankfully, I'm less dizzy today (a 7), but my body and soul feel battered. I'm digging deep here, but my spirit is failing. I can hardly walk at all.

 

I'm really hoping the anti-inflammatory that I'm taking for my fractured foot isn't playing a role. It's certainly making my tinnitus worse, as expected, and it's quite possible that my increased dizziness is tied to hormonal changes. I wish I knew. In the meantime, I'm still in a lot of pain with the verrrry slowwwww healing fracture and all the compensatory pain that comes with it in the rest of my body. Ugh. Very ugh.

 

And you? How are you holding up? 

 

 

 

 

Thankyou for the update Lapis,I often wonder how you are doing.That foot of yours sure is taking it's time to heal,isn't it!That must be so frustrating not being able to walk much at all.I get what you are saying about your failing spirit.It takes so much determination to get through a day when we are so off balance,along with the other symptoms that ravage our poor bodies.I feel a bit down myself today,tired of the uphill battle day in and day out.While I felt less symptoms this morning,I did manage to make a big pot of chili this morning.I put in containers and put in the freezer.Nice to have on nights I feel too ooky to cook!

 

 

I am getting mini waves during the day now.I started out pretty decent this morning,then later in the morning felt the jittery anxiety stuff come on,followed by the dizziness getting worse and the shaky legs.I hope it will calm down later today.In the meantime,hello again health fears!

 

I wonder if it's the dizziness that is causing the waves?It seems like it gets worse during a wave and I get so much more anxiety too?I still can't figure out the pattern.I think my brain is just too wiped out to think. 

 

Sometimes I head to bed and feel a bit more normal,then while I lay there I get a wave of the same thing.I doze off,then wake up anxious,rinse and repeat.Then I can't sleep very well all night.I still wake at 3:00 with the cortisol surge,but some nights aren't as bad.

It's like the same old story day in and day out,I am so bored with it I could scream!

 

I do think I feel better than I did  year ago at this time,and that does cheer me up alittle.Do you notice much healing this year compared to last?If you don't mind me asking,when you mentioned hormones,did you mean menopause type hormones?

 

 

Also,I would be leary of the anti inflammatories.I took them a couple of different times years ago (pre- benzo),and they made me so nauseated, anxious,and like I was losing it.My dad told me he thought it sounded like the anti inflammatories since I was too sick to figure out what was wrong.I stopped them and felt better pretty fast.I have never tried them again after that.I even put them on my allergy list so they don't give me them again.I don't mean to scare you,and you might be able to handle them,but I noticed they made me very sick when I took them.I thought I would mention it.

It's hard to be in pain,so I understand why you want to take them.

 

 

 

 

 

[[La...]]

Hi 2200,

Just getting back to you on some of what you wrote. Yes, my foot is healing sooooo slowly. I'm sure it has to do with the state of my bones, plus the dizziness, plus my ongoing problems with my other foot. It's way less than ideal for bone healing, so I'm keeping my fingers crossed that it's still going to get there. According to the last Xray, it's moving in the right direction, but geez, it's brutally slow. And the doc said that the swelling can go on for six to nine months, so that's another really uncomfortable factor in this whole thing. I'm NOT a happy camper!

 

Congrats on getting the chili made! Is that for tomorrow? Or will that last for a few meals? I'm not a football fan, but I understand that chili is pretty popular food for Super Bowl Sunday.

 

The dizziness could very well be causing your anxiety. For me, the two are always coupled, because dizziness is an anxiety-provoking sensation in and of itself. It's scary and exhausting to always be on guard and trying not to fall. It's unnatural, and it just feels wrong.

 

Those early morning wake-up calls are NOT nice! I get them too. Mine are usually caused by pain, which, of course, has been way worse since the fracture. 3:30 am seems to be my usual time, but it's been earlier or later too.

 

As far as hormones go, I'm right in the menopause zone, but I'm not quite there yet. I can't even guess what's happening, but for instance, the fracture swelling seems to be tied to hormones, and worsens at certain times of the month. I don't intend to try anything to counteract the hormonal changes, though. I wouldn't want to mess around with anything and add another factor into the equation. What about you? What are your thoughts on this one?

 

Thanks for telling me about your anti-inflammatory experience. There are few options for pain control, and, of course, opioids are out of the question for me. Acetaminophen is fairly safe, but I don't find it useful. The question becomes, "How much pain can I tolerate?"  :'(

 

Blech.

 

Anyway, speaking of pain, I'm going to lie down for a few minutes to get some of the swelling down. Then I'll watch something online for awhile and hope for a better night of sleep. I hope you sleep well, 2200. Take care!

 

I wish everyone who's dropping by a good night tonight! 

[[Th...]]

Hi, I join the club as I have had dizziness since Friday morning. This is new for me and it might be this is well known but I share my experience anyway. So I felt dizziness 3 days ago on Friday morning when I woke up. I hardly succeed to walk to the kitchen and had pressure in head and also was quite unstable. Well I thought it will go away and stayed in the couch for 2 hours. When ever I tried to stand up I felt dizziness and could not stand up without having head pressure and unstable feeling....

 

 

I decided I need to see doctor, called taxi and went to the ER. They put me in the bed, took EKG, blood tests, did tests etc. Afterwards they told me I do not have anything wrong with my blood circulation, I have nothing serious but they told me they don't know what is causing my dizziness. I was there full day on Friday and late afternoon doc said she wants to send me home as the ER is full and I do not have anything serious. She also said I can come back if I fall to the street or something. In addition to this she proposed me to see a doc who is specialist for dizziness type of issues.

 

 

I succeed to find one doc who deals with dizziness and me him on Sunday morning. He did several tests and found out that my dizziness is BPPV type of dizziness which was good news! He also told that drugs like benzos can be partly causing it but in case it starts suddenly and reacts movements it is most typically harmless BPPV type. We also discussed vestibular system related dizziness and he told me that typically patients having problem with vestibular system related dizziness ends up to hospital for couple of days and told me I do not have to be worried about it as symptoms are far more severe in case of such a problems.

 

 

Well, as said this is new for me and I do not know much about this but decided share my experience.

 

 

Take care! 

 

 

 

 

 

 

 

 

 

 

 

 

[[La...]]

Hi Thomas,

Thanks for sharing your experience. It sounds pretty intense, but at the same time, it sounds like you got the answer you needed fairly quickly. If it's BPPV, it's quite common, and it's also treatable with the Epley Maneuver and certain vestibular exercises. Did they do that maneuver on you? Or mention other treatments?

 

Benzodiazepines are known as "vestibular suppressants" in the medical literature, and, as such, they can CAUSE dizziness. They can also interfere with the body's ability to normalize balance. So, they're not meant for long-term use. I put up a number of links on this topic near the beginning of this whole thread (see pages 1-4, I think). Or you can just google "vestibular suppressants" to find lists of medications that work that way (e.g. antihistamines, anticholinergics, benzodiazepines), none of which are recommended for long-term use.

 

Many of us around here are dealing with a floaty-boat, push-pull type of dizziness that these meds seem to cause. Like many others around here, I was on the meds for a number of years. Had I known how they could affect the vestibular system, I never would have taken them. But I didn't know.

 

Lots of people get dizziness while taking the meds and after common off. It's very, very common. That's why I started this thread so long ago!

 

Anyway, take good care, and I hope the dizziness passes soon. 

[[Th...]]

Thanks Lappis, yes doc did Epley Manauver with me and adviced to do it 1-2 times a day. We agreed that I will do it and check if this goes away and then if yes, then it is BPPV. Agreed that I will meet him again if it does not go away in 1-2 weeks.

 

Yes I read material behind links you posten already long time ago and it was good to do it before going to see the doc as I was already prepared to discuss about subject so it helped. Thanks about posting the links!

 

Yes it very well can be that benzos caused part of my problem as well but as I haven't experience bad dizziness earlier during the wd and now during the post recovery I bet that BPPV is the more obvious cause. Well, I will see this in next couple of weeks.

 

Thanks about starting dizziness support group! Very good information package for all of us. Take care! T.

[Guest [...]]

Hi 2200,

Just getting back to you on some of what you wrote. Yes, my foot is healing sooooo slowly. I'm sure it has to do with the state of my bones, plus the dizziness, plus my ongoing problems with my other foot. It's way less than ideal for bone healing, so I'm keeping my fingers crossed that it's still going to get there. According to the last Xray, it's moving in the right direction, but geez, it's brutally slow. And the doc said that the swelling can go on for six to nine months, so that's another really uncomfortable factor in this whole thing. I'm NOT a happy camper!

 

Congrats on getting the chili made! Is that for tomorrow? Or will that last for a few meals? I'm not a football fan, but I understand that chili is pretty popular food for Super Bowl Sunday.

 

The dizziness could very well be causing your anxiety. For me, the two are always coupled, because dizziness is an anxiety-provoking sensation in and of itself. It's scary and exhausting to always be on guard and trying not to fall. It's unnatural, and it just feels wrong.

 

Those early morning wake-up calls are NOT nice! I get them too. Mine are usually caused by pain, which, of course, has been way worse since the fracture. 3:30 am seems to be my usual time, but it's been earlier or later too.

 

As far as hormones go, I'm right in the menopause zone, but I'm not quite there yet. I can't even guess what's happening, but for instance, the fracture swelling seems to be tied to hormones, and worsens at certain times of the month. I don't intend to try anything to counteract the hormonal changes, though. I wouldn't want to mess around with anything and add another factor into the equation. What about you? What are your thoughts on this one?

 

Thanks for telling me about your anti-inflammatory experience. There are few options for pain control, and, of course, opioids are out of the question for me. Acetaminophen is fairly safe, but I don't find it useful. The question becomes, "How much pain can I tolerate?"  :'(

 

Blech.

 

Anyway, speaking of pain, I'm going to lie down for a few minutes to get some of the swelling down. Then I'll watch something online for awhile and hope for a better night of sleep. I hope you sleep well, 2200. Take care!

 

I wish everyone who's dropping by a good night tonight! 

 

 

 

Lapis,I do think the hormonal changes with menopause make everything a bit worse.I think I am still getting some of that,and that I could be starting down the other side of menopause now.When I started to get panic attacks in my early 50's I think it was from the hormonal shifts.

 

I even have some of the night sweats and started waking at 3:00 in a huge cortisol/anxiety surge back then too.I know some of these symptoms became way worse with the benzos,along with the new symptoms from the benzos alone.I often wonder if menopause would have been so much smoother to go through if I hadn't used the Lorazapam and tried antidepressants for the anxiety in the first place.

 

Sore joints,not being able to multi task several different things at a time anymore or you feel too over whelmed,dry itchy skin that makes you scratch like a hound dog,mood swings/wanting to bite someone's head off some days then crying the next minute because you even had those mean thoughts and feel like a  crazy woman,having to wear those darn ugly reading glasses because your arm isn't long enough anymore,etc.seems to be hormonal,but I know this all became much worse with all the benzo trouble.

 

So,I think it can only get better with time,since we will heal from the benzos with time,and the same with our hormones rebalancing after the extra fun menopause passes too! :yippee:I think some very smooth sailing is in our future!We just have to wait for the roller coaster ride to end!

 

I hope today is better Lapis!It's always so great to talk to you!

[Guest [...]]

Thanks Lappis, yes doc did Epley Manauver with me and adviced to do it 1-2 times a day. We agreed that I will do it and check if this goes away and then if yes, then it is BPPV. Agreed that I will meet him again if it does not go away in 1-2 weeks.

 

Yes I read material behind links you posten already long time ago and it was good to do it before going to see the doc as I was already prepared to discuss about subject so it helped. Thanks about posting the links!

 

Yes it very well can be that benzos caused part of my problem as well but as I haven't experience bad dizziness earlier during the wd and now during the post recovery I bet that BPPV is the more obvious cause. Well, I will see this in next couple of weeks.

 

Thanks about starting dizziness support group! Very good information package for all of us. Take care! T.

 

 

 

Thanks for the info about your dizzy trouble Thomas!I hope it gets better quickly!

[[La...]]

Thanks Lappis, yes doc did Epley Manauver with me and adviced to do it 1-2 times a day. We agreed that I will do it and check if this goes away and then if yes, then it is BPPV. Agreed that I will meet him again if it does not go away in 1-2 weeks.

 

Yes I read material behind links you posten already long time ago and it was good to do it before going to see the doc as I was already prepared to discuss about subject so it helped. Thanks about posting the links!

 

Yes it very well can be that benzos caused part of my problem as well but as I haven't experience bad dizziness earlier during the wd and now during the post recovery I bet that BPPV is the more obvious cause. Well, I will see this in next couple of weeks.

 

Thanks about starting dizziness support group! Very good information package for all of us. Take care! T.

 

Hi Thomas,

I'm keeping my fingers crossed for you and hoping that it's BPPV, and that it goes away quickly. I'm glad you got the treatment too. I've heard it's quite effective.

 

What are your symptoms like? Spinning? Nausea? I don't have either of those two things, and I never did. When I first asked my doctor about my dizziness, he wrote down BPPV on his card, and when I looked it up, I realized he was quite wrong about my situation. It took quite awhile for me to learn what was going on. I was still on benzos when mine started, and had I known then what I know now, I would've started to taper off them immediately. Ugh....such regret!

 

Anyway, I'm glad you were well-informed before going into your appointment, as that can go a long way in taking the right steps to getting better.

 

I'm glad, too, that this thread has been helpful for you. On my end, it's been life-saving to have people sharing information and support while going through this. I can't imagine having to do it all alone.

 

 

[[La...]]

2200, your post made me smile! Thank you! I'm sure I'm perimenopausal, but it's not full-blown yet. On Friday, I was bawling in pain and frustration, and your line about "hound dogs" made me think about me yowling like a hound dog, which is what I was doing that day. OR, perhaps I was chasing my tail like a ground hog, since it was, of course, Ground Hog Day! 

 

And yes, of course, I've also given in to the idea that I should just wear my reading glasses when I need to, because pretending that I don't need them isn't really fooling anyone, is it?! 

 

I haven't got night sweats (yet?), but I'm sure the increased swelling and pain can be put down to hormonal changes. The crying jags come with the territory of being dizzy, in pain, scared, frustrated and anxious. Crying is one of my few outlets for all of that, and darn it, I'll do it if I need to! 

 

I will try to think positively about our upcoming "smooth sailing", because for now, I still seem to be stuck on this rocky, floaty boat, and I'd certainly prefer calmer waters.....or just some dry land.

 

It's great to talk to you too, 2200, and I'm glad you're back on board with us. I missed you when you were gone!

 

P.S. What did the Ground Hogs say in the western U.S.? Around here, the furry little guys couldn't seem to agree, so I assume we're going to have a bunch more winter. It's fine, though, since I can't go out anyway.

 

 

[Guest [...]]

2200, your post made me smile! Thank you! I'm sure I'm perimenopausal, but it's not full-blown yet. On Friday, I was bawling in pain and frustration, and your line about "hound dogs" made me think about me yowling like a hound dog, which is what I was doing that day. OR, perhaps I was chasing my tail like a ground hog, since it was, of course, Ground Hog Day! 

 

And yes, of course, I've also given in to the idea that I should just wear my reading glasses when I need to, because pretending that I don't need them isn't really fooling anyone, is it?! 

 

I haven't got night sweats (yet?), but I'm sure the increased swelling and pain can be put down to hormonal changes. The crying jags come with the territory of being dizzy, in pain, scared, frustrated and anxious. Crying is one of my few outlets for all of that, and darn it, I'll do it if I need to! 

 

I will try to think positively about our upcoming "smooth sailing", because for now, I still seem to be stuck on this rocky, floaty boat, and I'd certainly prefer calmer waters.....or just some dry land.

 

It's great to talk to you too, 2200, and I'm glad you're back on board with us. I missed you when you were gone!

 

P.S. What did the Ground Hogs say in the western U.S.? Around here, the furry little guys couldn't seem to agree, so I assume we're going to have a bunch more winter. It's fine, though, since I can't go out anyway.

 

 

 

 

Lapis,the Groundhog said six more weeks of winter!!!!!Guess what I made my chili with?

[[La...]]

Omigosh! Groundhog Chili? Oh nooooooo!

 

Um....I don't eat red (blue? purple? green?) meat, so can I have mine with just the kidney beans, please?

[[Be...]]

BPPV will resolve on its own too without treatment.  Mine did.

[[Th...]]

Hi all, my symptom is mainly spinning when I move my body in bed or came out of the bed. So BPPV seems to be most obvious reason. Well, I have had it now 4 days so I just need to wait and see in adition to make the treatment 1-2 times a day.