Author Topic: The Dizziness Group: For those who are floating, boating, falling or flying  (Read 386710 times)

[Buddie]

Dr Jennifer Leigh ([...] 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.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

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 [...] 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 [...] 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 [...] 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 [...] 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 [...] 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!

« Last Edit: May 16, 2022, 10:34:55 pm by [Buddie] »
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

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 [...] of you have! 

Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

[...] 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 [...] doing things. If it’s intense, I lay down because it gives me NO choice or I’[...] spin out of control and fall. So what I do is this: if I can’t beat it then I join it.  :thumbsup: On the days I can push through I do it because I know it’s a controlled push to compensate. [...] controlled I mean I set a limit on how much I push. Kinda of what you said, [...] 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 [...] 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. [...] 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 [...] 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 [...] 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 [...] said makes sense. There are cases of documented dizziness due to peri menopause and menopause ladies. BUT in our cases, it’s clearly caused [...] 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 [...] 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 [...] 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’[...] be Netflix and chill until it dies down then outside for a wobbly walk.
« Last Edit: May 18, 2022, 01:08:51 pm by [Buddie] »
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Well said, [...] Den!!!  I agree with all of that. 
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

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 [...] 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 [...] 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.


Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Thank you [...]. Very interesting.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Thank you [...]. Very interesting.

Yes, [...], 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.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

I’m interested in knowing what your EMT has to say. Please keep me posted, [...].
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 [...] thing to alter disequilibrium. It’s so delicate! These pills attacked….no, correction…..severely attacked our vestibular system. [...] situation for us going through this. Question is….how to fix it? They can’t! Only time.
Trust me, [...], 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 [...] so! I’m now 23 months. It has literally taken so much from me. So I wait…..
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Hi [...],
If I get some of my questions answered on this one, I'[...] definitely share the info here. Take care!  :)
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.