Author Topic: The Dizziness Group: For those who are floating, boating, falling or flying  (Read 344766 times)

[Buddie]

Re: The Dizziness Group: For those who are floating, boating, falling or flying
« Reply #7470 on: September 11, 2021, 08:53:17 pm »
Hi [...],

Yes, I know it is unpredictable. However, I donít see any real success stories and that frightens me to death. I have so many symptoms like POTS, full body numbness, constant dizziness for over a year, burning skin, constant headaches/migraines. Constant anxiety. Looping thoughts. Severe insomnia. The list goes on and on. Now vertigo. I canít take it anymore. I want to know people really can heal.
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[Buddie]

Re: The Dizziness Group: For those who are floating, boating, falling or flying
« Reply #7471 on: September 12, 2021, 12:45:22 pm »
Hi [...],
The thing is.....there are so many success stories. Pages and pages and pages. People don't necessarily come back here and tell us they're better, so we just don't have solid data on it. That's the nature of BB. It's all over the place. It's a place for support, but it can't provide data. It's not set up that way.

We all want that kind of info, believe me. All I can suggest is to read the success stories. Those are real people who went through it and came out the other end. That's why the stories are there...to provide [...] and inspiration.

« Last Edit: September 12, 2021, 10:16:06 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]

Re: The Dizziness Group: For those who are floating, boating, falling or flying
« Reply #7472 on: September 16, 2021, 01:56:41 pm »
Thanks for the reply, I was aware of the vestibular issues due to withdrawals from your previous posts. I started a supplement called L-Lysine few days ago and for the first 2-3 days I felt most of my dizziness was going away which made me jump from happiness. Then gradually it stopped working. I know Lysine is a antiviral supplement so I wanted to give it a try. [...] still taking it and [...] I am not making my vestibular system go lazy and thus slow down [...]. Any inputs.
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]

Re: The Dizziness Group: For those who are floating, boating, falling or flying
« Reply #7473 on: September 16, 2021, 04:06:02 pm »
Hopefully, L-Lysine will continue working. Please keep me updated on your progress. I am really in a bad way, and have been for a very long time. I feel like I am losing my mind at this point. I donít know what to do or try, and often feel there is no point continuing anymore. I am so depressed.
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]

Re: The Dizziness Group: For those who are floating, boating, falling or flying
« Reply #7474 on: September 22, 2021, 06:03:46 pm »
Hi Everyone,
I just wanted to share these abstracts from a recent otolaryngology review. The first one is called "Acute Vestibular Syndrome and ER Presentations of Dizziness", and in listing the various possible causes of dizziness people experience, "medication effects" are included...thankfully. It also states, though, that it can be difficult to figure out what's causing someone to feel dizzy -- a fact that comes up very often in abstracts and studies on this topic. Dizziness is such a common symptom, and it can have so many different causes -- some more serious than others.

Here's the abstract:

https://pubmed.ncbi.nlm.nih.gov/34294435/ 

 Abstract

Acute vestibular syndrome (AVS) describes sudden onset, severe, continuous dizziness that persists for more than 24 hours. Its wide differential presents a diagnostic challenge. Vestibular neuritis is the most common cause, but stroke, trauma, medication effects, infectious, and inflammatory causes all present similarly. The TiTrATE model (Timing, Triggers, And Targeted Exam) is systematic way to evaluate these patients, and the HINTS Plus exam (Head Impulse, Nystagmus, Test of Skew, plus hearing loss) is critical in differentiating central and peripheral causes. The importance of recognizing risk factors for stroke and the role of imaging is also discussed.


And here's a related abstract from the same journal. It looks at the different kinds of testing that are used to determine the cause of dizziness.

"Efficient Use of Vestibular Testing"

https://pubmed.ncbi.nlm.nih.gov/34294436/

 Abstract

While the majority of vestibular disorders may be diagnosed solely on clinical grounds, a variety of clinical scenarios exist in which objective functional assessment of the vestibular system provides data that facilitate diagnosis and treatment decisions. There exists a veritable armamentarium of sophisticated vestibular test modalities, including videonystagmography, rotary chair testing, video head impulse testing, and vestibular-evoked myogenic potentials. This article aims to help clinicians apply an accessible decision-making rubric to identify the clinical scenarios that may and may not benefit from data derived from specific vestibular function tests.



And this one -- part of the same series of reviews in an otolaryngology journal -- says something that I've come to know very well while going through all of this and doing so much reading on it. The first line of the abstract is the key line: "Despite progress in vestibular research in the last 20 years, much remains poorly understood about vestibular pathophysiology and its management." Yup, thanks.

"New Frontiers in Managing the Dizzy Patient"

https://pubmed.ncbi.nlm.nih.gov/34294438/

 Abstract

Despite progress in vestibular research in the last 20 years, much remains poorly understood about vestibular pathophysiology and its management. A shared language is a critical first step in understanding vestibular disorders and is under development. Telehealth will continue for patients with dizziness, and ambulatory monitoring of nystagmus will become a diagnostic tool. In the next 2 decades, it is anticipated that vestibular perceptual threshold testing will become common in tertiary centers, imaging with improved spatial resolution will yield better understanding of vestibular pathophysiology, and that vestibular implants will become a part of clinical practice.

 
« Last Edit: September 23, 2021, 11:59:27 am by [Buddie] »
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[Buddie]

Re: The Dizziness Group: For those who are floating, boating, falling or flying
« Reply #7475 on: September 22, 2021, 10:24:10 pm »
I wouldn't trust a vestibular implant at all.  If something goes wrong with it then the patient is screwed.
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[Buddie]

Re: The Dizziness Group: For those who are floating, boating, falling or flying
« Reply #7476 on: September 28, 2021, 08:43:20 pm »
I wouldnít trust it either [...]!  :thumbsup: Nope nope nope.
I had a break from my boatiness finally. It wasnít completely gone all day but mostly mild in the background unless I went for a walk. It would rev up for about an hour or so then go back to barely there. I was in heaven lol
This past Saturday I was hit with a sudden episode of spinning and every since then my boatiness is back to almost constant again. Iím [...] because if it went almost completely away then it [...] it again. I just [...] this time it wonít stay as long.  :thumbsup:
I notice this sudden episodes happen every time I make progress when I go walking. I wonder why?
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[Buddie]

Re: The Dizziness Group: For those who are floating, boating, falling or flying
« Reply #7477 on: September 30, 2021, 01:11:46 am »
I have that boatiness constantly. No vertigo. Iím 3 months off CT. Iíve had rocking and swaying for the last 8 weeks. Also triggered while eating and fragrances.
 
The Epley maneuver helped. Itís supposed to be for BPPV, so I doubted that it would work. But it made a difference instantly. Apparently I have a some level of BPPV.
 
Donít overdo it tho. I did the maneuver once and it helped, one more time and help more, 3rd time fine. I could still feel a little balance problems. Did it a 4th time and it made it worse. A fifth time helped but I wish I woulda quit while I was ahead. I did the maneuvers 15 minutes apart
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[Buddie]

Re: The Dizziness Group: For those who are floating, boating, falling or flying
« Reply #7478 on: September 30, 2021, 12:01:31 pm »
Hi WWW,
Did you see or speak to a doctor or health professional about doing that move before you did it? I was just reading this webpage from Johns Hopkins about the Home Epley Maneuver, and it refers quite a few times to a "healthcare provider" with whom you might consult before doing this exercise.

Here's a quote from the webpage:

"If you still have symptoms after doing the home Epley maneuver, call your healthcare provider. You may not be doing the maneuver the right way. Or you may have another problem thatís causing your symptoms of vertigo. The home Epley maneuver only works to treat vertigo from BPPV. But many other conditions can cause vertigo."

https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/home-epley-maneuver 
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[Buddie]

Re: The Dizziness Group: For those who are floating, boating, falling or flying
« Reply #7479 on: September 30, 2021, 05:16:22 pm »
@[...]

Yes I have been to the ENT, neurologist, nephrologist, physicians, psychiatrists, dozens and dozens of ER doctors, urgent cares. Every kind of blood test, imaging, to include brain mri. They all said thereís not wrong with me. I also get the tinnitus but only about 15 times a day for about 10 seconds. Iím only 3.5 months in. The first 6 weeks I had many horrible symptoms but not loss of balance. Then suddenly severe boatiness. Hasnít gotten much better or worse. The maneuver helps me for a few hours. I didnít think it could help before I tried it. I see others who it doesnít affect either.

Iíve read that itís safe to do at home. Itís not an invasive surgery. But if you do it too many times you could cause more crystals in the ear. Some sources say only do it once a day. Some sources say 3-5 maneuvers, 3 times a day, or until dizziness is gone for 24-48 hours.

Have your symptoms progressed at all?? Do you have moments during the day that you arenít dizzy??
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.