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

[[La...]]

It was 2 wheeled. When you're constantly trying to catch yourself from falling backwards, that walker falls right on top of you. The ones with the seat is wise. Hopefully I will remain atleast this stable so I walk around more. I think that if we don't show our brains what's normal then it takes forever to learn it ( compensate) but it has to be done gently or it backfires. That's what happened to me. But I'm not going to let fear of falling or fainting keep me from trying

[[La...]]

I have a question. My boatiness changes throughout the day. For example: as soon as I wake up, I'm boaty. It settles down around lunch to very mild but is mixed with pushing pulling like on a fast elevator. In the evening, it alternates between push/pull & spinning like floating away. About 7 or 8 at night, it goes back to boatiness.

Is this normal to have different kinds of dizziness? Does that mean it's trying to heal it?

[[La...]]

Hi LadyDen,

I really don't know what that might mean. I really do think we're all different when it comes to these things. I had certain things happening at the beginning, but then that changed. Just observe it and see if you see any patterns or anything. Maybe keep a log of the dizziness levels, if that helps you try to make sense of it. In my case, I seem to have a pattern of two bad days in a row dizziness-wise, then one better one. Before, it used to be an every-other-day pattern. I have no idea why it changed!

 

The way I look at it is that once you're off the medication, you're on your way. But whether there are any "normal" or "average" patterns, I really don't know. People around here come and go, so we don't really have a database that we can look to in order to see the range of possibilities.

 

Have you checked out the first page of this thread? I collected all of the words that dizzy BBs had used to describe what they were feeling. It's pretty interesting to see how people described it. Again, it just shows how different people are when it comes to this stuff.

[[La...]]

Thx Lap. It makes sense what you're saying. I guess the changing is the brains way of progress. If that's the case then it's a good thing. The pattern I described is how it is for me now. I read the phases thread, and yes the explanation threads, exercise thread, other people's success stories, etc. they were helpful but I didn't recall anyone having this pattern. Maybe it's just unique to my way of healing. I'm not worried or scared about it but was wondering if it's normal and if others experienced it. I'm definitely in phase 2 so I guess it's supposed to be crazy 

[[li...]]

Hi there ..

I’m not sure where to begin anymore or end with my story...

But I’ve been around here for 8 years now ....

And I still have the dizzy boaty...feel like I’m walking on cushions feeling ...or being pushed and pulled to the left.

A full left ear and pressure ..ringing in ears all the time...I can’t have things quiet ...the “ noise” in my ears is deafening.

But I was diagnosed with BPPV a few years back .. never had it in the beginning of my WD ...but years later developed it...

This has to be the most awful lingering symptom now....it will be gone for months...then just appear out of no where and last for weeks...

I take a homeopathic dizzy supplement... it does seem to help...

But I’ve been following this page for some time now...and there is a lot of useful info here...so thank you for that.

Here is hoping that someday we will get off the boat ride...and have smooth sailing ...

Much love and healing to all.❤️

little m

 

[[La...]]

Hi little m and LadyDen,

Your two stories just show how different we all are when it comes to how these meds affect us as individuals. There really does seem to be a wide range of manifestations. I've never had any spinning or vertigo, but my boatiness and tinnitus (hissing/ringing in my left ear only) have gone on and on. Little m, it's interesting to hear that you've had periods of symptom-free life. Nice! I'm sure that must feel amazing.

 

 

[[La...]]

Hi Lap. Yes I'm noticing everyone has some differences. I can't wait until I get my next window. Started a wave last night. Woke this morning in a huge wave that lasted 5 hours. I'm still not at baseline. I had plans to get up today...HA!!! Not gonna happen cuz I'm back to being very boaty. I try to stand & feel faint. This makes me sad. Seems every time I think I make a little progress, I go backwards. But I'm not gonna give up

[[La...]]

Hi Lap. Yes I'm noticing everyone has some differences. I can't wait until I get my next window. Started a wave last night. Woke this morning in a huge wave that lasted 5 hours. I'm still not at baseline. I had plans to get up today...HA!!! Not gonna happen cuz I'm back to being very boaty. I try to stand & feel faint. This makes me sad. Seems every time I think I make a little progress, I go backwards. But I'm not gonna give up

 

Yes, this "adventure" can be rather cruel at times. I've actually had the experience of fainting AND having the boaty dizziness. The fainting had to do with my blood pressure going waaay down when I got some bad cramps on day one of my period. So, while I was trying desperately to stay vertical on a floaty boaty day, I fainted in the chair before I could safely get to lie down. It happened too fast. Of course, I regained consciousness, but I still had the floaty boaty dizziness for the rest of the day. That happened four times, and I don't recommend it at all. NOT a good thing! If you're feeling faint, then just take it easy until that lets up. And stay hydrated!

 

 

[[La...]]

Thx for the advice. I'm sorry that happened to you. I'm scared When it happens. I drink plenty of liquids from the moment I wake. As I'm reading some of these threads, I notice them being filled with much chit chat instead of information or updates on their progresses. I know people have a right to say what they want. But the threads that have topics should have more info than what I'm seeing. Have you noticed this?  For example:

Like the thread topic is nausea but it's 5-6 pages of talking about your cats! Or the thread is dead.

[[La...]]

Well, sometimes people need interaction with others who get it or who are in the same situation they are. I don't spend a lot of time looking at other threads these days. This thread has had lots of quiet times, and that's just how it goes around here; People drop in and out. Some people just read but don't post. These threads can be seen by people who aren't members too, so you never know how many people are following.

 

As far as going off-topic, I just think that's what people need to do from time to time. And the moderators and administrators only have so much time and energy to police things.

 

 

[[La...]]

Yes you're right. The mods & admins are awesome here. I'm grateful for this site. Before I became a member, I read threads that helped me understand what was wrong with me, how to approach my doctor to taper & how to taper/ what to expect. I saw the posts of dizziness but I figured since I tapered slow, I'd escape this brutality. I was wrong. But I know if I went CT I would be wayyyyyyy worse. My worse symptom is this dizziness. Is it true that your worst is the last to go?

[[La...]]

I don't really know, Lady Den! I guess the Success Stories could give a sense of that, but I don't think people always write about that. Sometimes people are hesitant to list all of their symptoms, and instead they just say, "You know the list!" or something like that. Again, I get the feeling that there's little in the way of "average" or "normal" when it comes to benzo withdrawal. I really do think everyone has unique circumstances -- especially because many people have taken multiple medications. It's so hard to tease out one thing from another. Is it the one medication or the other that caused the most problems -- or is it the combination thereof? Or is the way someone came off? Or the speed with which they did? Or something else?

 

Genetics have to play a huge role in how things roll out, not to mention overall health. Really, there's an endless number of factors involved. I do think that the Success Stories show how diverse the cases are. I remember reading about a woman who had been on diazepam for 50 years, and she healed! She was in her 70s, I believe. It was pretty inspiring to read that. She wasn't successful on her first try, but she eventually made it.

 

It's worth checking out some of the stories, if only to see how varied they are.

[[La...]]

Very interesting Lap. I appreciate you taking the time to answer my questions. I'll check out the success stories.

That woman you mentioned on diazepam healed after that long of using it. Wowwwwww! Now that gives hope. I guess my 7 year stretch of injury has a good chance 

[[Mi...]]

I just read about "Gluten Ataxia". Folks who are sensitive to gluten can get vertigo, and balance disorders from gluten.

 

I know benzos have a huge affect on the vestibular system, but wow has anyone experienced vestibular, vertigo, dizzyness issues because of gluten insensitivity?

[[La...]]

I've never heard of that, Miss Fortitude. No one has mentioned it here thus far. But if you have any links to literature on it, please do share.

[[Mi...]]

I've never heard of that, Miss Fortitude. No one has mentioned it here thus far. But if you have any links to literature on it, please do share.

 

Here are a couple links. There are a bunch of videos on You Tube also. I've never heard of it. Not to get off of the subject of benzos affecting the vestibular system, but it's interesting.

 

https://www.verywellhealth.com/gluten-ataxia-symptoms-562398

 

https://www.medicalnewstoday.com/articles/320730

 

 

[[La...]]

My boatiness/dizziness is still with me but I've lately had more waves occurring that seemed to have made my balance a bit better. I still can't walk around more than a few minutes but when I do, I'm not feeling like I'll fall over as much. Hopefully this means my boatiness will leave me soon. Your thoughts? Anyone experience this?

[[Mi...]]

My boatiness/dizziness is still with me but I've lately had more waves occurring that seemed to have made my balance a bit better. I still can't walk around more than a few minutes but when I do, I'm not feeling like I'll fall over as much. Hopefully this means my boatiness will leave me soon. Your thoughts? Anyone experience this?

 

LadyDen

 

My vertigo & boatyness started to really subside at 9 months off of Ativan. I had it 24/7 with 2 "attacks" of waking up with the room spinning. I actuallly did the Epley Maneuver (you can find this easily on Youtube) for the room spins. They were bad. For awhile I thought I had BPPV Benign Positional Postural Vertigo (this too is easy to find in a Google search)  I saw several specialists. Had the vestibular testing (which came back normal) and I did vestibular rehab. I'm not sure if that stuff even helped. But, I finally figured it out. It was the Ativan that reeked havoc on my vestibular system.

 

What helped was being off of Ativan & letting my CNS and vestibular system heal. It was bad. I had difficulties showering for months due to the temporary vestibular damage that Ativan did to me. Plus all the other withdrawal symptoms.

 

I'm 16 months drug free and 90-95% healed. Like I said 9 months is when the vestibular healing started to really happen. Now I'm exercising more. I never really did stay bedridden though throughout my tolerance and withdrawal. Even when I was in acute withdrawal, I always tried to be somewhat active even if that meant just cleaning the cat box and making the bed for the day. My activity slowly increased over time as I healed and was able to tolerate it. Just within the last month am I able to get up to my exercise heart rate during long power walks and feel the benefits versus it being just too much physical activity. I see the benefits already. That includes better mobility for my body and it's helping in every way. My body, heart and brain just feel better.

 

So, hang in there. It takes time. You'll get there. I also cut down on carbs. I don't eat bready stuff nor tortillas anymore, and I just feel better as a result of it. I already cut out caffiene and alcohol of course early on, and started to eat clean. I just recently cut back on carbs. I feel a lot better. I have more energy too.

[[La...]]

Thx Miss for the encouragement. Yes it's so humbling to be this boaty! Shower is a no no no. I can't stand up long enough. I even tried a seat in there, not a good idea. Bathing is easier for me. I'm hanging in there as best as I can. I'm on week 15 (day 107) post jump. That's 3months & 3 weeks. If I had to choose between this boatiness going away for good or eating the same meal the rest of my life. I'd gladly eat the same meal boatiness free! I'm hoping I turn the corner real soon. I'd hate to deal with this for another 4-5 months. But if I had to then I would have no choice. I'm glad you're not dealing with this anymore, Miss. I'm happy for you.

Once it left, did it briefly return or poof gone?

[[Mi...]]

Thx Miss for the encouragement. Yes it's so humbling to be this boaty! Shower is a no no no. I can't stand up long enough. I even tried a seat in there, not a good idea. Bathing is easier for me. I'm hanging in there as best as I can. I'm on week 15 (day 107) post jump. That's 3months & 3 weeks. If I had to choose between this boatiness going away for good or eating the same meal the rest of my life. I'd gladly eat the same meal boatiness free! I'm hoping I turn the corner real soon. I'd hate to deal with this for another 4-5 months. But if I had to then I would have no choice. I'm glad you're not dealing with this anymore, Miss. I'm happy for you.

Once it left, did it briefly return or poof gone?

 

Mine started in tolerance. It started with waking up with the room spinning, then I was on the boat for the next two years with another room spinning "attack" a few months later. The second attack was much worse. This was before I had any idea what was going on, and before I stopped the benzo Ativan. After that second attack the boat started (and not long after so did my tinnitus). I struggled to just sit in a chair. The room spinning attacks stopped after the second one....I may have had another mild one and did the Epley.

 

In hindsite I think some things happened that prolonged my healing, including the dizzyness/boat. I don’t drink much, but in withdrawal drinking can be a set back. I had one glass on wine for Halloween of 2019, then one cocktail for a company Christmas party. I honestly think that alcohol prevented me from healing sooner. Also in the first couple months of withdrawal I was still eating Chinese (MSG) and doritis (MSG). I did not find benzo buddies until about 8 months after my last Ativan. It really seemed to start to slowly let up in December (last Ativan May 2019). Then for some reason January was a bit of a dizzyness challenge. February was my last month of dealing with it. It started to lessen in February, by March it was gone. I don’t remember it to be like a switch though. Gradually decreasing throughout the month of February is how it happened for me.

 

After March if I'd get too little sleep, or stress the boaty feeling did not come back, but if I moved and turned my head fast it seems as though my brain "could not keep up" with my fast movement sometimes. It would startle me a tad, but I got used to it. Even that subsided.

 

Hang in there. You have to really pamper yourself in withdrawal. Realize that your CNS (central nervous system) is healing. That's why the sensations are so odd. Be calm and gentle with yourself.

[[La...]]

Thx Miss for the encouragement. Yes it's so humbling to be this boaty! Shower is a no no no. I can't stand up long enough. I even tried a seat in there, not a good idea. Bathing is easier for me. I'm hanging in there as best as I can. I'm on week 15 (day 107) post jump. That's 3months & 3 weeks. If I had to choose between this boatiness going away for good or eating the same meal the rest of my life. I'd gladly eat the same meal boatiness free! I'm hoping I turn the corner real soon. I'd hate to deal with this for another 4-5 months. But if I had to then I would have no choice. I'm glad you're not dealing with this anymore, Miss. I'm happy for you.

Once it left, did it briefly return or poof gone?

 

Mine started in tolerance. It started with waking up with the room spinning, then I was on the boat for the next two years with another room spinning "attack" a few months later. The second attack was much worse. This was before I had any idea what was going on, and before I stopped the benzo Ativan. After that second attack the boat started (and not long after so did my tinnitus). I struggled to just sit in a chair. The room spinning attacks stopped after the second one....I may have had another mild one and did the Epley.

 

In hindsite I think some things happened that prolonged my healing, including the dizzyness/boat. I don’t drink much, but in withdrawal drinking can be a set back. I had one glass on wine for Halloween of 2019, then one cocktail for a company Christmas party. I honestly think that alcohol prevented me from healing sooner. Also in the first couple months of withdrawal I was still eating Chinese (MSG) and doritis (MSG). I did not find benzo buddies until about 8 months after my last Ativan. It really seemed to start to slowly let up in December (last Ativan May 2019). Then for some reason January was a bit of a dizzyness challenge. February was my last month of dealing with it. It started to lessen in February, by March it was gone. I don’t remember it to be like a switch though. Gradually decreasing throughout the month of February is how it happened for me.

 

After March if I'd get too little sleep, or stress the boaty feeling did not come back, but if I moved and turned my head fast it seems as though my brain "could not keep up" with my fast movement sometimes. It would startle me a tad, but I got used to it. Even that subsided.

 

Hang in there. You have to really pamper yourself in withdrawal. Realize that your CNS (central nervous system) is healing. That's why the sensations are so odd. Be calm and gentle with yourself.

 

Hi Miss Fortitude,

It's great news that you're doing better, so congratulations on that! I was just reading your profile, and it looks like you didn't actually take a lot of the medication. The fact that it still took a fair amount of time for your dizziness to settle down tells us just how sensitive our vestibular systems can be.

 

I'm one of those people who took A LOT of medication over the years, and I'm paying a very, very high price for that. 

 

Still, though, some people who took less medication have longer withdrawal symptoms than those who took more. There's not always a clear, logical reason that we can point to for longer-lasting symptoms -- at least, from what I've seen around here. I wish I knew what the factors are. I suspect that genetics plays a big role.

 

[[La...]]

Yes, Lapis, I think your right about genetics. I also think that it's an individual concentration of which receptors it targeted the most. That certainly explains why my worst symptoms are different than someone else's but pretty much everyone has the same symptoms. It would be that whatever part of the brain is most affected would need more time to heal. So the sooner an area heals, symptoms diminish or go away. How fast this happens depends on your individual make up. It makes a lot of sense! How are you feeling btw?

Thx Miss Fort for your input and answering my question. I hope when mine goes, it goes for good! Mine hit me at the end of my taper and is just now improving a little bit. My balance is better and boatiness is less intense. I'm almost at my 4 th month in one week. I became extremely boaty 2 1/2 months before I jumped. So I've been like this for almost 7 months. I'm happy for you that yours is gone. Gives me hope!

[[Mi...]]

Still, though, some people who took less medication have longer withdrawal symptoms than those who took more. There's not always a clear, logical reason that we can point to for longer-lasting symptoms -- at least, from what I've seen around here. I wish I knew what the factors are. I suspect that genetics plays a big role.

 

Lapis,

 

I think there is a genetic component for sure. I haven't mentioned this a lot on BB, but my mom had vertigo/dizziness issues that I remember when I was in 8th grade into Highschool. She said she felt like she was "walking drunk." I knew she took Xanax AND Tylenol with Codiene. She was prescribed these medications for migraines by a reckless physician who kept refilling them year after year. I don't really remember her having migraines. Probably because whatever little migraine problem she had was completely taken over by the benzos reeking havoc on her vestibular system. I do remember her constantly dealing with dizziness. I remember her telling me in my 20's that she had a pharmacist help her off of the Xanax. Back then I of course had no idea what that could have possibly entailed, nor did she ever share with me the specifics.

 

I have a memory of her sitting in her pink robe in the middle of the night very upset and shaken because the she woke up with the room spinning. This was the early 80's. She had one of those doctors that chalked it up to "women problems". I just remember her having a rough few years where the house was messy and she was in bed more, but she did not explain her symptoms much. However, I was only about 12 years old. I'm guessing that after she went to her doctor and he was useless to her, it probably made her feel like she was crazy, therefore she just silently suffered. It seems like the pharmacist was her only help. I started helping her out around the house more during this time in her life. She did regain her full energy again. It took a couple years or so. Unfortunately, when I went through this myself in my late 40's she was not around for me to ask because she had passed away when I was 44.

 

It's sad that there were not resources around to help her. This is why Benzo Buddies is so important. I was too young to grasp what was going on. She did see a of couple specialists. She would say: "Why am I always dizzy?" And, none of them helped her. Not to be sexiest against men, but this was true. All of her physicians were men. Male physicians who had a "woman's place is behind the man" kind of thinking. This did not help.

 

Back then, my naive take on it was that she took Xanax and Tylenol with Codeine and THAT was her problem. I did not know any better. I had no idea of the PHYSICAL DEPENDENCE AND THE HARM IT CAN DO TO THE BRAIN. I figured she was having cravings, even though she never acted like she was. I thought addiction meant seeking the high. That was my assumption. With benzos that is not the case. She was not craving a high. She was dealing with damage from benzos. Unfortunately, most people don't understand that. No one, not even my mom put the Xanax and the dizziness together. She thought, like many who get stuck in this viscious cycle, that the dizziness and taking Xanax were two entirely unrelated things, and that the Xanax helped the dizziness. We know better though don't we? Really it's tolerance occuring. Even I didn't understand until it happened to me. I just thought I inherited my moms vertigo and dizziness and I was preparing to face it for my life. It took a while for me to "connect the dots" between the benzo and the vestibular issues.

 

My mom did go on to live a happy life. She was a housewife that never had to report to a job or punch a clock. She did what made her happy, and her and my father traveled (always by train or car. Mom stopped flying in the late 60's about the same time she took her first Xanax... I'm guessing the Xanax side effects kept her from flying too.) She had a full beautiful life in spite of her battle with benzos. My mom had a great sense of humor and she helped everyone.

 

And, I'll just "put this out there". Maybe I mentioned this before, but I don't always remember what I've written here on BB, and I don't look back on my own writing, but my husband and I both think my mom reached out to me from the heavens and warned me that I was in trouble. She basically saved my life.

 

 

[[La...]]

Wow, Miss Fortitude! Thank you so much for sharing your mom's story with us here. A very powerful and touching piece of writing. Thank you.

 

I wish we could ask your mom about all of that. I'm so, so sorry she went through all of that. What a travesty! From all the reading I've done, it seems there was already plenty of literature on benzos and their ill effects by the 1980s, so it's a mystery why she was loaded up on all of those meds. The combination of benzos and opioids (codeine) is potentially lethal, due to the fact that both meds can depress respiration. I'm glad she didn't die from that combo. And I'm so SO glad to know that she did, indeed, have happier times. Wonderful news! And very hopeful for those of us around here.

 

When you mention "women's problems", it's important to note that changes in estrogen and progesterone at various points in the menstrual cycle have been potentially linked to a type of disequilibrium called "Mal de Debarquement Syndrome". I've come across a number of studies that mention this. Since I'm in perimenopause, I've been particularly interested in any of these MdDS studies that refer to increased numbers of women suffering from this type of dizziness as their hormones wane and fluctuate during this later time of life. One questionnnaire-type study found that the ratio of women to men with MdDS symptoms was 9:1. Very high!

 

 

[[La...]]

A beautiful story, Miss. Thx for sharing it. Your mom sound like a sweet lady. Hugs