Monitoring Carotid Blood Flow Using In-Ear Wearable Device During Tilt-Table Testing, 2023, Hemantkumar Tripathi MD et al

Forgot to mention that the technique used is photoplethysmography, which is using light to measure changes in volume. The company has much more info on its website now (it was rather lacking a few months ago, which was unfortunate).

There are also examples of data from a person with POTS wearing the gadget given in a recent newsletter:
https://mailchi.mp/stat-health.com/march-newsletter-2024

It can be worn during everyday activities, and while sleeping, if desired. Apparently even okay for showering!

I hope they will publish data from a tester with CFS soon.

 

This is interesting:

"Why the left ear only?
STAT is designed only for the left ear, because the human body is not symmetrical and we’ve found the Left External Carotid Artery is a better representation of the total blood flow going to your head."

I wonder if that in any way could have some connection to why so many of us vere or stagger to the left?

 

Would this also be useful for patients who have not been tested for OI but still have problems with blood flow to the brain due to excess red blood cells and increased viscosity, and therefore exhibit similar symptoms as OI. Such as:

Secondary Polycythemia Associated with COVID-19 Is Associated with Higher Mortality but Does Not Seem to Affect Thrombotic Risk | Blood | American Society of Hematology (ashpublications.org)

Also, it's only used in the left ear. This is a question I've just raised on another thread about this device.

""Why the left ear only?
STAT is designed only for the left ear, because the human body is not symmetrical and we’ve found the Left External Carotid Artery is a better representation of the total blood flow going to your head."

I wonder if that in any way could have some connection to why so many of us vere or stagger to the left?"

New in-ear device promises to predict fainting, help understand dizziness and brain fog

 

Yes, I hope they have an acronym!

 

I’m attending an open house this weekend unless my body refuses. I will be in the first group who are giving feedback - beta trials (ish).

 

@LJord , that’s great! Hope it goes well at the open house.

 

I’m excited.

 

Hm. Just looked at my tilt test and my cerebral blood flow measure (near infra-red spectroscopy) didn't drop till my systolic was in the 40s. So, not gonna hold my breath for this.

 

I attended an open house yesterday. This device is amazing. I’m also impressed at the attention to detail of the people developing this. They are working on connections with researchers who are also excited based on what I have read.

 

@Ash , perhaps you could try to have your specialist persuade the people doing the tilt table test to add a Doppler ultrasound scan.

If the hospital or facility does venous Doppler scans, they could potentially do your carotid artery before and during the TTT.

I have found out recently that measuring the carotid artery during TTT may not be that unusual in cardiology departments.

Alternatively, perhaps they could be persuaded to do the ultrasound while you do a NASA lean test.

(Some doctors use transcranial Doppler, which is much less widespread. But there are plenty who use the carotid measurement. At least that’s what I’ve seen in the research. It’s hard to know what happens clinically.)

 

@LJord , that’s great to hear.

 

Hey @Ken Turnbull, thanks!
I had my test already but I’m gonna look up all your suggestions when I have the cognitive capacity to learn about it all.

 

@Ash , sorry, I forgot to check the date of your post.

 

I’ve found the whole OI thing confusing. I’m always interested in what people know and think about it all any time!

 

Of no scientific note: the company has changed name to "Lumia". The press release doesn't say why.

 

Why Lumia™? Our solar-powered wearable device uses the power of light to track changes in the blood flow to your head. Together, we can illuminate what’s really happening in these complex orthostatic conditions . . .. and enlighten the science for how our conditions are understood and managed.

We’re partnering with brilliant luminaries in the fields of autonomic neurology, cardiology, sleep science, and more. A new age for managing complex conditions is dawning.

https://mailchi.mp/stat-health.com/may-2024-newsletter

 

Financial Assistance Program for Lumina

Program

Expected Timeline
Funding of the Lumia™ Financial Assistance program has already begun, and spaces will be limited.

As of now, the Lumia™ device and Membership program are not yet ready to ship — we are still in pre-orders and ongoing development, with Beta shipping soon.

The expected timeline (subject to change) is as follows:


• April 2024: The Patient Advisory Council finalized selection criteria for the program, to help determine who will benefit most from how the device functions, how to establish financial need, and help ensure more equitable access for disadvantaged and under-served individuals.
• June 2024: Program announcements will be sent to interested individuals, so they will have consideration time.
• July 2024: Open call for Financial Assistance applications sometime in July. Applications will remain open for 30 days.
• August 2024: The Patient Advisory Council will review applications and select recipients at the end of the month during their monthly meeting.
• September 2024: Recipients will be notified of the result of their application by email. A prompt response via email can help ensure they do not lose their place. Failure to respond to emails after 3 attempts may mean we move to the next candidate on the list.
• October-December 2024 (ESTIMATED): Individuals receiving Financial Assistance offers will be onboarded to the program. This timing is an estimate and is subject to change depending on how the Beta, Early Bird and Crowdfunding cohorts roll out.
• Future: The Patient Advisory Council will review the activity of donor contributions, and make a recommendation on what an ongoing financial assistance program might sustainably look like.

Am I eligible?
Applicants must be adults, reside in the 50 US states, have (or be able to get) an iPhone, have daily symptoms of Orthostatic Intolerance, and have a diagnosed condition associated with drops in blood flow to the head.

They must also be capable of managing both the Lumia™ device and the application, either on their own or with caregiver support. These are the basic qualifications -- financial eligibility will be shared soon for the application process.

Keep in mind . . .
It is possible that our device might not be able to fit a small percentage of people. In the very rare possibility that this happens to someone who was selected for assistance, we would unfortunately not be able to send a device, and would reach out to the next eligible individual in the Financial Assistance Program.

LUMINA Health

 

Reduced Blood Flow to Head in Post-Exertional Malaise
https://lumiahealth.com/blogs/news/reduced-supine-blood-flow-to-head-in-post-exertional-malaise-pem

 

An email from Lumia today:

Lumia Financial Assistance Program

Through the generous contributions of donors in the community, as well as in collaboration with Dysautonomia International, the Lumia Financial Assistance Program is preparing to open applications.

Applications will be open for a full month, July 24 through August 24. Stay subscribed to this email list for your link to apply.

Spaces in this program are very limited, and interest is high.

Selections will be made by the Lumia Patient Advisor Council at their August 27 meeting. Awarded individuals will be notified starting in September, and we plan to onboard them in the October through December time frame. These timelines are subject to change in order to provide the best experience for recipients.

To be eligible for participation, individuals must be adults, reside in the 50 US states, have (or be able to get) an iPhone supporting iOS 16 or later, have daily symptoms of Orthostatic Intolerance, and have a diagnosed condition associated with drops in blood flow to the head. They must also be able to manage the Lumia™ device and the iPhone app, either on their own or with caregiver support.

As this program is intended to support those with no other means to order a Lumia™ device, there are also some basic criteria of financial need.

Application will be done via a short survey. You will not need to upload financial documents or medical records. The survey asks for contact information, some questions about basic eligibility and financial need, and concludes with a short statement (1-2 sentences) of personal motivation — “What do you hope to get out of the Lumia program?”

Selected participants will receive a Lumia Initiation Kit which includes the in-ear wearable device, Light Station, and Carry Case. A full year of Lumia app Membership will also be provided, with future years at your own cost.

Thanks again for your interest in the Lumia Financial Assistance Program!

Please watch your inbox for an application invitation email on July 24.