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

Dr Jennifer Leigh (benzo coach) also dealt with this symptom frequently for a long time. She was using a walker at one point. Her recovery took a long time. Longer than the norm,  but none the less she prevailed. She has regained her life, traveled, and lives happily.

Hi All,

So many thoughtful replies here! I appreciate all the input. I will share a bit too:

 

I, too, try to keep moving, but I'm hampered greatly by concurrent, severe foot and leg pain, which makes it almost impossible to do very much. My dizziness seems to have a three-day pattern of two bad days in a row, followed by a slightly better one. The changes in intensity happen overnight, and I have long wondered what happens in the brain during the night that could explain it.

 

I, too, am in perimenopause -- late stage now. I watched a video and read a book by a woman whose first symptom of perimenopause was dizziness. Her name is Amanda Thebe, and her book is called "Menopocalypse". She had a lot of medical assessments and tests done to find the cause of her dizziness, and in the end, her gynecologist told her it was caused by perimenopause. I got in touch with her via email, and she told me she tried hormone replacement therapy to see if it would help, but in the end, it was medication for migraines that seemed to work. I'm trying low-dose HRT because it can be an important factor with regards to bone density. If it somehow helps the dizziness too, that would be incredible.

 

On a related note, I have come across many studies that look at the possible connection between female hormones and various types of dizziness. I'm hoping to follow up with some researchers on that topic and will certainly share anything that might be of use to people here.

 

I also read both of Baylissa's books, and I even spoke with her a number of years ago. I knew she'd been dizzy and that she'd recovered from it. It gave me hope at that time, and I still keep it in mind. At the time, she had already spoken with many people for whom the dizziness had passed, including some who'd woken up to find that their dizziness was suddenly gone. Sounded fantastic!

 

 

I'm sure hormones could play a part.  I feel like the particular brand of disequilibrium I have is mostly related to the benzos but so many things can contribute and hormones make total sense. 

 

After a few weeks of no boatiness, I'm back in it in a big way but I wanted to offer up one thing that I do that helps a little.  When I'm trying to walk (say in a store or even across a room in my house) I pause, take a couple of deep breaths and make sure my poster is as erect as it can be and that I keep my legs moving straight forward. Sometimes it helps me to lock my eyes on something in the distance.  I have to tell myself to uncurl my toes, lower my shoulders and use my core to hold me upright.  It doesn't stop the boat from rocking but it helps me feel more in control and centered.

 

I'm grateful for any tips the rest of you have! 

 

 

Miss F and Helen..here’s my take.

What Helen said is also my experience, according to my level of the wave I can push through and fake it by doing things. If it’s intense, I lay down because it gives me NO choice or I’ll spin out of control and fall. So what I do is this: if I can’t beat it then I join it.  On the days I can push through I do it because I know it’s a controlled push to compensate. By controlled I mean I set a limit on how much I push. Kinda of what you said, Miss F. Listening to my body tell me when I’ve had enough. Yes it is important to fake it so the brain can compensate or get used to handling normal things. Yesterday I had drunk Jack Sparrow on my back but I went for a walk when he settled down. I set a limit because he wasn’t gone, just chilled down a bit. At the end of the day, ladies, we can’t do nothing about this. Sad but true! I tried a vestibular specialist, physical therapists, vestibular exercises on YouTube, etc NOTHING helped! Nothing! Why? Because it’s not like any other injury. It’s caused by a medication and NOT an anomaly, infection/virus, physical injury such as stroke or head trauma…..it is from our medications “ attacked” mechanisms in certain areas of the brain. These pills are highly ototoxic- injurious to the vestibular system. We have to keep in mind, it was hit EVERY time we took our pill. That’s a lot of hits!!! Like tapping a glass to cause a crack verses shattering it to bits….huge difference, right? But unlike that glass ( which gets discarded) we are not irreparable  :thumbsup Thank God! I’m sure you both agree that this being permanent is not a life to live at all. This definitely made me have more empathy for people with brain injuries. These circle backs we are having, IMO,is fine tuning. It has to be! As the brain starts returning to homeostasis, it finds “ parts” that need a bit more repair. So it jumps right in by making it act up again to fix it. Like having a leaking pipe. Water has to be poured in it to allow the leak.

We hang in there. We keep moving. We do what we can when we can. We’re at its mercy unfortunately.

As far as hormones, what Lapis said makes sense. There are cases of documented dizziness due to peri menopause and menopause ladies. BUT in our cases, it’s clearly caused by pill damage. Perhaps being a certain age just simply makes it worse or prolongs it? Who know. Me personally, I had no choice but to have a complete hysterectomy many years ago at a much younger age (early 30’s). I was immediately put into surgical menopause. I was given hormone patches to help with hot flashes and other symptoms that swinging hormones causes. I was on those patches for about 2 years to allow my body to go through menopause in a controlled way. I took over the counter black cohosh. It worked great! I’m not suggesting anyone do that. But it is the main ingredient in over the counter hot flash medications. I chose cohosh because after researching it, it had little to no side effects. Very safe natural supplement. I didn’t want all that other stuff in the over the counter hot flash meds. Dizziness/ boatiness was not one of those symptoms caused by my menopause. AMBIEN clearly caused this. I wasn’t taking anything else. We all know that female hormones play a big part of wave intensity and even starts waves. It’s because of our fragile CNS doesn’t handle too well the swings in hormones. I even had the thought that seeing the body is always operating on hormones of different kinds, maybe that’s why we get waves in varying intensities. Perhaps…one day our hormones are perfect then tomorrow we have too much or too little?? With a fragile injured CNS, it’s just too much for our brain to handle trying to balance. It just makes sense to me…your thoughts?

When we heal, it doesn’t cause waves to be so bad or at all because it’s healed enough to balance it.

Well, I pray you all have a less boaty day today. Me included! So far…not so good. So I’ll be Netflix and chill until it dies down then outside for a wobbly walk.

Well said, Lady Den!!!  I agree with all of that. 

Hi Dizzy Buddies,

There's another recent study that looks at disequilibrium of the sort that we're all experiencing, and it's unclear from what they're saying here what the cause is. The descriptions of dizziness are the same as those that we all use. I've bolded the first line, where the descriptions are given. If you're interested, have a look here, and click on the link in the abstract if you want to read the full study:

 

https://pubmed.ncbi.nlm.nih.gov/35140753/

 

2022 Jan;17(1):5-12.

 

doi: 10.1016/j.joto.2021.06.003. Epub 2021 Jun 26.

 

The prevalence of isolated otolith dysfunction in a local tertiary hospital

 

Kenneth Wei De Chua  1  2 , Heng Wai Yuen  1 , David Yong Ming Low  1 , Savitha Hosangadi Kamath  1

Affiliations

 

 

    1

    Department of Otorhinolaryngology-Head and Neck Surgery, Changi General Hospital, Singapore.

    2

    The American Institute of Balance (AIB), Largo, FL, USA.

 

    PMID: 35140753 PMCID: PMC8811395 DOI: 10.1016/j.joto.2021.06.003

 

Free PMC article

 

Abstract

 

Objective: Patients with dizziness may present with symptoms of tilting, swaying, rocking, floating or with disequilibrium. This may be suggestive of an isolated otolithic dysfunction yet, there is little emphasis on this emerging clinical entity. To characterize and describe the prevalence of isolated otolith dysfunction in a local tertiary hospital and correlate them with clinical diagnosis.

 

Methodology: Retrospective medical chart review of patients who presented with dizziness to the specialist outpatient Otolaryngology clinic, who required vestibular laboratory investigation.

 

Results: Of the 206 patients, more than half of them (52.4%) fulfilled the criteria for either probable or definite isolated otolith dysfunction. When there are clinical symptoms of otolith dysfunction reported, there is a 1.62 odds of a remarkable laboratory otolith finding. The most common clinical finding was "no clear diagnosis" (65.5%) followed by Vestibular Migraine (13.6%).

 

Conclusion: The prevalence of isolated otolith dysfunction is quite high. Laboratory tests of otolith function should be performed more routinely. This can be done in a sequential way to optimize cost effectiveness in countries with no insurance reimbursement. Prospective cohort studies on isolated otolith dysfunction, will lay the groundwork for achieving diagnostic consensus and formulating rehabilitation plans to aid this group of patients.

 

 

Thank you Lapis. Very interesting.

Thank you Lapis. Very interesting.

 

Yes, LadyDen, it looks like an "emerging" syndrome that hasn't quite been defined yet. I've printed out the full paper, and if I get the chance to speak to an ENT again, I will definitely be asking questions about this one. It may reflect what we're all dealing with here. In the "Results" section, they refer to people who have "no clear diagnosis", and that's certainly what many of us hear when we get tested or seek help for our disequilibrium.

 

In my opinion, the fact that many people have "normal" test results, yet still have serious symptoms can only reflect the fact that the testing may be missing certain things. I understand that science doesn't have all the answers for everything right now and that not all testing is 100% perfect. But this study appears to acknowledge that people with symptoms of "tilting, swaying, rocking, floating or with disequilibrium" exist and need help.

 

Anyway, that's my take on it.

I’m interested in knowing what your EMT has to say. Please keep me posted, Lapis.

And it isn’t a surprise to us that they can’t find anything when doing al those tests. That’s because they don’t have one. Since what they do have is considered….the best they’ve got then they’re clueless. It doesn’t take but one tiny thing to alter disequilibrium. It’s so delicate! These pills attacked….no, correction…..severely attacked our vestibular system. Sad situation for us going through this. Question is….how to fix it? They can’t! Only time.

Trust me, Lapis, if I could pay to make this go away for good, I wouldn’t hesitate! I’d go broke and be homeless. But I won’t be boaty and unbalanced anymore! Wow it would be awesome to wake up with it gone! Lately it has been feeling like it’s trying to. I sure hope so! I’m now 23 months. It has literally taken so much from me. So I wait…..

Hi LadyDen,

If I get some of my questions answered on this one, I'll definitely share the info here. Take care! 

Hi, I see everyone in this group has been off the drug for a long time. I'm still tapering after many times going off and back on that have me severely kindled. After a bad crash into severe acute withdrawal with terror 24/7, SI all day and night etc for months, I held for 7 months. After that, I started tapering again and I'm tapering very slowly and with long holds and this is the only way I can do it. Does anyone else have head pressure combined with dizziness and fatigue? It's gotten so bad that I'm planning to hold for a few months in the hopes that it gets better before resuming my taper. I don't believe in "pushing through" intolerable symptoms (that's what made me crash in 2019). I have to work. This symptom is not common for me. In the past, it was mostly terror, insomnia, physical pain, etc. Those very slowly and gradually got better with the hold and slow taper (except the pain), but now I have these new sxs. Anyone with a similar change in sxs, from terror and insomnia to gradually getting less of that and suddenly this horrible dizzines and fatigue? It's dizziness + fatigue (nearly incapacitating sometimes) + incredible headache. I'm 54 and have to keep on working and I have a 16 y/o and nobody helps me so I can't keep tapering and be bedridden. I hope the hold helps me with these sxs. It's all I can do.

Yes unfortunately those symptoms are common. All you can do is do your best to distract until it heals. But seeing that you’re still tapering, it might be awhile because the real healing happens once completely off. In the meantime be careful when you’re dizzy so you don’t fall.

Wishing you the best outcome. You can do this….you can make it this time! Hugs!

Yes unfortunately those symptoms are common. All you can do is do your best to distract until it heals. But seeing that you’re still tapering, it might be awhile because the real healing happens once completely off. In the meantime be careful when you’re dizzy so you don’t fall.

Wishing you the best outcome. You can do this….you can make it this time! Hugs!

[/quote

 

Thank you Ladyden 💖

You’re welcome sweetie. As your quote says

 

This Too Shall Pass 

Morning hugs to all of us boaty floaty dizzy unbalanced buddies. 

 

I just wanted to take the time to extend some encouragement to myself and all of us. Being dizzy/ boaty/ unbalanced is no joke! Wow it really does rob us of so much. I’m sure I’m not the only one on here that unfortunately found out the hard way of just how debilitating this is. My heart goes out to the many people suffering from this no matter if it’s caused by benzo/zdrugs. Having said that, what helped me cope the most is “ joining” my symptoms to the extent that I ignore them. What I mean is this….if I’m not balancing well then I pretend I’m a kid on a balance beam having fun on the playground. If I’m boaty when sitting up I pretend I am on a boat headed to a nice vacation place. You get the idea? I do this because the phrase if you can’t beat them then join them seems like a good idea. I just don’t see the need to let it steal my joy too! I figured I might as well just try to make it something positive instead of letting it be my thing that keeps me depressed. After all, it is just a symptom like all the rest. It is going to go away eventually. When it’s really intense that is hard to believe. Especially if it died down or left completely then came back. But I choose to see it in a different light….if it did that then it can and will do it again….permanently! 

I’m faking it until I make it. I’m challenging it but gently. All I can do is continue to wait while it does it’s “ thing” to heal in it’s time. Am I tired of it….absolutely! Do I believe in my healing…absolutely! Did I make it through today…absolutely! My job each day is to get through that day. Those days add up to our completed healing. I’m staying positive and trying to make the best of every day by doing something I enjoy or put a smile on my face. Because at the end of the day, I want my days of waiting on my healing to not be days of 24/7 misery or just sitting there letting negative thoughts take over. So what I can do is engage in something that is wholesome to my soul, mind and body. On my bad days I still do this even while laying here in bed. If it’s something as simple as watching a YouTube video of a baby smiling as it’s siblings are playing with it. Cutest thing ever!

Wishing you a stable day. Pamper yourselves because you deserve some extra TLC. Don’t lose hope. Believe in your healing. It’s already in the making! 

❤️😘

Hello, today I feel really lightheaded, when I am sitting it is doable, but when I am walking or standing, it is tough.

since Wednesday I did a new taperstep, so I think it is related to that. Can anyone give me some advice? 

Hugg Jerry

Hi Jerry,

The best thing to do is to try to be a bit patient with the process of tapering, and also to be careful when you have to get up and move around. Balance issues are very common with benzos and Z-drugs because they affect many aspects of the central nervous system, including the vestibular system. If you need to use a cane to stay steady when you're standing up and walking, please do so.

 

Take care!

Hey Jerry. I hope yours is short lived. I’ve been dealing with is over 2 years ( mine started at the end of my taper). But it is improving. As Lapis said…be careful. I used a walker for a short while. It was worth the security 

Better safe then sorry, my friend.

Hi Dizzy Buddies,

I know it's been a bit quiet around here of late, but I just wanted to drop in because I came across another study that might be of interest to people here. It's a review study that looks at the prevalence of muscular pain in people who are dizzy, and the percentages are rather high -- 43% to 100%. It's a huge problem for me, that's for sure. Clearly, it is for others as well, and it has been documented in studies.

 

Here it is:

 

"Prevalence and distribution of musculoskeletal pain in patients with dizziness-A systematic review"

 

https://pubmed.ncbi.nlm.nih.gov/35191148/

 

Abstract

 

Background and purpose: Musculoskeletal disorders are among the leading causes of disability globally, but their role in patients with dizziness and imbalance is not well understood or explored. Such knowledge may be important as musculoskeletal pain and dizziness can mutually influence each other, leading to a complex condition requiring more comprehensive approaches to promote successful recovery. We conducted a systematic review to examine the extent and characteristic of reported musculoskeletal pain in patients with dizziness.

 

Methods: A comprehensive literature search in Medline, Embase, Cochrane, Scopus, Amed, Google Scholar, SveMed+, and Web of Science was conducted in March 2021. Inclusion criteria were studies examining patients with a vestibular diagnosis, patients with cervicogenic dizziness and patients included based on having dizziness as a symptom; and reported musculoskeletal pain. Data regarding age, sex, sample size, diagnosis and musculoskeletal pain was extracted. The Crowe Critical Appraisal Tool was used for assessing methodical quality of the included studies.

 

Results: Out of 1507 screened studies, 16 studies met the inclusion criteria. The total sample consisted of 1144 individuals with dizziness. The frequency of patients reporting pain ranged between 43% and 100% in the included studies. Pain intensity were scored between 5 and 7 on a 0-10 scale. Pain in the neck and shoulder girdle was most often reported, but musculoskeletal pain in other parts of the body was also evident.

 

Discussion: In the included studies, musculoskeletal pain was highly prevalent in patients with dizziness, with pain intensity that may have a moderate to severe interference with daily functioning. Pain in the neck and shoulder is well documented, but there are few studies addressing musculoskeletal pain in additional parts of the body. More research is needed to understand the relations between dizziness and musculoskeletal pain.

Thank you Lapis! It’s funny because every time I go outside to try to take a walk my muscles hurt. So I’m not surprised seeing that the brain trying to balance us works the muscles to the max! They all must work together to keep us upright. I appreciate you taking the time to post this.

Big hugs and I hope you’re doing better today.

Yes, thank you Lapis. I notice that the two things coincide in my body and brain too and Lady Den's explanation of why makes a lot of sense to me.

Helen it takes  combination of things in our bodies working together to keep us balanced. Muscles, eyes, ears, etci

It’s a very very delicate dance that if our vestibular system is off even a tiny bit…we go to dizzy boaty land. Something as simple as a little extra fluid in the ears will do it. Or a car ride. Our muscles work extra hard to keep us from falling. In hopes of preventing injury….broken bones or hitting our heads. So I’m not surprised that I notice my muscle pain ONLY when I go for my walks. 

Hi Helen and LadyDen,

Yes, it seems really common, based on what I was reading. A lot of people have upper body pain from holding their heads rigidly, but in my case, it's all about my feet and legs. On BB, I've seen lots of people refer to "jelly legs", weakness and pain in their legs from being dizzy. Mine is extremely debilitating. I also fractured a bone in my foot a few years ago, and it took ages to heal. A totally brutal experience.

Lapis  :hug:

Am so sorry that happened to you sweetie.

Lapis  :hug:

Am so sorry that happened to you sweetie.

 

Thanks, LadyDen. I do not recommend the combination of foot fracture and dizziness. I'm quite scared of it happening again.