I do not know if anyone would be interested, but Otolith Labs is doing a virtual vertigo study
cool – do you know if there is a FDA trial ID? looks legit but i didnt see it on the website
edit nevermind i found it: Evaluation of the OtoBand in Subjects With Self-reported Vertigo to Reduce Severity of Vertigo in a Real-world Setting - Full Text View - ClinicalTrials.gov
its legit
thanks for being vigilant
this is one to be excited about too! looks like a really good team behind it
I am scheduled to Zoom today with clinical coordinator to see about moving forward with study. I will report back here.
Thank you @sheepdog_lord for finding that information. I didn’t know about the FDA thing.
i worked in clinical trials for about 4 years so I know the tricks of the trade
just for background, all clinical trials conducted in the US need to be registered with the FDA and are therefore searchable on their site. for example, you can search by condition for “vestibular migraine” or “migraine” and all the clinical trials for those conditions will populate.
additionally if a company is conducting a trial in a country outside the US but eventually want to submit the product for FDA approval, it needs to be registered as well so you may see a lot of trials that are happening outside of the country
I am officially enrolled in this study, and I start tomorrow. Oddly enough, I have been vestibular migraine (VM) free for about a month now, however this morning I woke up with one brewing, and as the day has gone on it’s gotten worse…coincidence?
Is it finished? I noticed date 2022.
It says 2022 on the website, but they are still doing the study. I just started yesterday. The trial lasts up to 35 days once you start. I will be updating my personal diary with information as I move along in the study.
this was the previous trial – im sure the new one is listed, this is just the first one i saw
Thank you. Very interesting and shame it’s only for US citizens.
I have just completed my third clinical trial with Otolith since 2019 and am hoping this device gets FDA approval as it helped tremendously and I was able to tell the difference between the actual device and the placebo the first two times. The last time it did not help much so I think I had the placebo but this time they only provided one device. Good luck to you!
it might not be – check the trial locations
A post was merged into an existing topic: Rita’s Migraine Diary
The Otolith device protocol is divided up into two phases – baseline and treatment, each lasting about one week. I have completed the baseline phase. I have some questions about the research as there are so many nuances with dizziness and vertigo, and those nuances vary from one person to another. For me specifically, I have different kinds of dizziness and vertigo symptoms and how I categorize them, how I figure their cause, and in some cases, how I “treat” them.
As I have stated before, I am very sensitive to space weather (e.g., Schumann Resonance, Coronal Mass Ejections, Solar Flares, Radio Blackouts, & etc.) as well as “regular” weather (e.g., rain, snow, thunder, full and new moons). When I know that space or regular weather are about, I don’t both to try and fight it, treat it, & etc. because there is literally nothing that will make me feel better aside from the storm(s) passing.
If I am having what I call a vestibular attack (the kind of VM that hits hard and stays for about 2 weeks), nothing I can do but stay in bed, wait it out, and as soon as I am able and it is safe, start moving again so my vestibular system can recalibrate.
There are other types of experiences with my vestibular system that I have, but I will not exhaust it all here. All of the above to say that after having to endure this miserable condition of vestibular illness without support and benefit of a doctor’s care, medicine, & etc., I have come to know my body and my vestibular illness pretty well and trust my gut when it comes to bouts of vestibular illness.
The study does not allow for the nuances and varied experiences of vestibular illness, and tries, rather poorly, to pigeon-hole definitions of vertigo and dizziness. Additionally, the app that is used to track and establish baseline is a bit clunky, and does not allow for recording of anything rated less than moderate.
After completing the baseline phase, I was sent the device, which was not to be opened until the meeting with the research team was held on how to use the device, record episodes and treatment, & etc. I only had this meeting yesterday and I can already tell you that going forward, I’m not so sure about this (that gut feeling mentioned earlier.)
First, the device is similar to the headlamp my husband uses at work (he is an aircraft mechanic). Second, the control box for the device, which houses the battery and controls the speed (low, medium, high) is large (three inches long, one and a half inches wide, and one inch thick). Third, the therapeutic part of the device is a circular magnet attached to another box that measures one inch squared. The therapeutic part is supposed to sit behind the right ear on the mastoid projection and the control box is supposed to sit square in the middle of the head at the base of the skull where the spinal cord attaches. When treating a vestibular episode, one is to affix the headband according to the directions I just mentioned, and then choose a “speed” of low, medium, or high for the VIBRATION that is to be tested for no less than 30 minutes per episode.
Vibration? Goodness, if I fully understood that this was the situation prior to signing up for this study, I don’t know that I would have applied. Vibration is one of my triggers. Allow me to complain for a moment: I cannot use a SoniCare or similarly powered toothbrush because the vibration makes me dizzy. I found out the hard way that the massage function on my desk chair is a no-no after suffering vertigo for an entire day after only having the vibration on for less than 60 seconds! In physical therapy, they used what I liken to a handheld version of a jackhammer on my back to loosen up the fascia, and goodness me….I was dizzy for two days after that mess!
My husband tried the device on and utilized all three speeds. He, who does not suffer as I from vestibular illness, didn’t like it and, knowing me so well, said, “This will definitely make you feel worse if you use it.”
I have spoken to a lot of people who suffer from vestibular illness and I don’t think I’ve met one who didn’t have vibrations as a trigger. I just wonder what this research team was thinking? In all my years of sorting out tips and tricks to handle my vestibular illness, NEVER was a vibration of any kind on any part of my body or in my environment a consideration!
I will try the device once just for kicks and grins (probably just before bed just in case it does set me off and I can sleep through the worst of it), and will report back here in my diary on my experience.
I withdrew from the research study. I tried the device once and could not handle it for more than 5 seconds - literally, 5 seconds. My vision became distorted, felt like my eyeballs were rolling around in my head, and for 2 hours afterwards I felt awful. I woke up the next morning in full blown vestibular migraine/attack mode.
I managed to speak with the principal researcher for Otolith and spoke with him about people who are incredibly sensitive to frequencies, EMF, & etc. and how this device, which works solely by emitting frequencies to disrupt the dizzy communication between the brain and ear, should consider frequency sensitive people such as myself and 1) not allowing that population into the study group for the express purpose of not sending them straight into an attack and 2) maybe they can come up with an alternative treatment scheme that does not involve frequencies.
This guy listened to me, and told me that he was aware that space weather & etc. can definitely have an impact on patients like myself and that yes, this device would be a contraindication, however, he also had the tone of many doctors I have seen that communicates he thinks I’m off my rocker for believing that weather, space weather, EMF, even 5G impacts my vestibular health.
What I don’t get is this: if you have come to the conclusion that a frequency can help a vestibular upset, then why can’t the reverse be true as well? And why the continued gas lighting from the medical community on things that patients experience that aren’t yet in medical textbooks? I don’t get it. He even minimized the validation of vestibular migraine as rule out diagnosis that may not even be a real thing as much as it is a mental condition. The attitude made me mad and very happy to slap his little demonic headband back into the case and seal it in the SASE and toss it into my mailbox for the postman to pick up. Grrrrrrrrr
This reminds me of my reaction to going on a mini-trampoline. Omg it was so bad.
It’s definitely a thing (look at the number of sufferers on this website!), but may not work quite as simply as the name implies (which is just a hypothesis). Who knows …
Pretty rude though, probably trying to cover himself? Great bedside manner, omg!
Very interesting you had such a strong reaction.
Well done for being brave and trying it out!
I trust you are feeling better now?
Yesterday was horrible. I’m better today - more exhausted and VM hangover than anything else. I am hoping that the worst is past and that I can start feeling better again. I was feeling so much better and almost symptom free for the better part of the last 3 months.
https://otolithlabs.com/telehealthvertigostudy/
I just came across this today. I made it through the first set of screening questions and scheduled the consult, to see if I qualify. Sounds like you track your symptoms and wear a device and meet with them online at different intervals.
Why not I’ll give it a shot!!
Read @Rita’s experience above: perhaps that’s why not?