I’d like to share my personal Lumia™ data with you. Many people ask me how a device that can track the drops in blood flow to the head in conditions like POTS, OH, Long Covid and ME/CFS might be useful in daily life. I hope my data stories are interesting as you prepare for your own journey! I am “out of the POTS closet” — so you have my consent to share and forward this — just please keep the story with the graph so it isn’t misinterpreted out of context. — Shivani Ugrin
A common question in the POTS online support groups is, "Can a pet become a POTS Service Animal?"
I'm no expert on Service Animal Training for POTS, but I am very lucky to have a Support Animal for POTS who alerts naturally when I am having an episode. And now that I'm the first person with Autonomic Dysfunction to be wearing a Lumia™ device at home in daily life, we can start to look at what's really going on with the blood flow to my head when an animal is alerting.
One thing about me you should know is that I am obsessed with Quantified Self. On February 3, an otherwise ordinary morning, I was about to measure myself on a new “Body Comp” scale we got from Withings (#notsponsored). This is a bio-impedance scale that has advertised features for Pulse Wave Analysis, Vascular Stiffness, lean body mass, etc. One of several problems with this sort of tech for a person with POTS is that your feet have to be bare.
In normal life, I NEVER stand still without my compression on — it might as well be a Tilt Table Test! My BP and HR both spike and it’s pretty awful. I put compression garments on before even getting out of bed.
Below the story, I will share my Lumia Flow Index™ (aka STAT Flow Index) graph representing the flow of blood to my head through the External Carotid Artery.
My baseline flow starting out was a bit up and down as I was moving around my dressing area and doing a mix of activities.
Just before 7:21 I removed my compression layers of both socks and leggings at 30-40mmHg.
Just after 7:22 — where the blue shaded region begins — I stepped onto the platform and began standing very still to capture the Body Comp reading.
Almost instantly, my Support Animal Pinky began alerting.
Normally I listen to her; obeying alerts is an important way to maintain that behavior loop. Her typical alert is a nose bump, and if I ignore that, she will rear up and put paws on my legs.
Pinky started with her soft nose bump alert and a little sound. I ignored it.
She then immediately escalated to a paws-on-legs alert. I ignored that too, but internally noted, I was feeling lightheaded indeed.
A second paws alert, this time more urgent with claws. I tried to reason with her, explain I wasn’t finished on the scale.
Meanwhile the device I was standing on was slowly progressing through the measurement cycle but still hadn’t finished. (The whole cycle takes about a full minute.)
Next thing I know, sharp teeth closed HARD on my calf! I screamed and jumped off the scale, and my world became a flurry of tooth and fur, she was biting my legs fiercely, and chased me as I RAN from the dressing area, down a short hall, and threw myself onto the bed, flat.
Lying there, I was in absolute shock and checking my legs for bleeding. Pinky has never flipped out on me like that before. She transformed into a cartoon character like the Tasmanian Devil.
But then again, I’ve never repeatedly ignored her alerts. I remember thinking that it must have been a very dramatic Flow Drop indeed for her to become so upset. Due to a limitation of the clinical research device variant, I was only able to see the data a couple days later. However, you can see in the graph below why Pinky was so upset.
Shivani’s personal data graph of the proprietary Lumia Flow Index ™ tracking blood flow to her head. You can see that once she stands still without compression, there was an immediate and significant drop in Flow. The animal alerted within a few seconds and escalated alerts until the human complied by running to the bed and lying down. Flow began to recover during the run, and stabilized with lying down. This person has POTS, MCAS, hEDS, Long Covid and other diagnoses.
Removing my compression wasn’t too bad, but the moment I began standing perfectly still on the Body Comp scale, you can see the blue line of my Lumia Flow Index™ precipitously crash, in seconds. As I was running for my life in fear of this vicious fierce Support Beast, the Flow Index begins to come back up, which I assume is a result of the pumping action of my leg muscles.
This entire drama was only 2 minutes of my life, but I will never forget. And Pinky will never let me forget!
Pinky is a cat and she was born with a short tail. She was rescued in Rovinj, Croatia. She is a Support Cat and naturally alerts to POTS attacks.
FUN FACT: Pinky is the adorable (and normally gentle) real life inspiration for the Nudges you will be able to set for yourself in the Lumia™ app.
To answer the original question of this post — Can a pet become a Service Animal for POTS? — the answer is sometimes, maybe. But not usually, and definitely not without a lot of training.
Not every household pet can become a Service Animal, trained and qualified to work in public and perform specific tasks. And technically speaking, a cat is not usually considered eligible to be a Service Animal.
Not to mention, Pinky’s only relationship with training is the training she gives me to present delicious Fancy Feast meals on time.
That said, some animals will naturally alert to physiological changes in the people closest to them. Pinky has lived her entire life in the same room with me. Until more recently we had never been apart from one another for more than one day.
One interesting thing we are learning about Pinky is that she hasn’t only been alerting to Tachycardia. In this example, my heart rate had not yet gotten very high when she was already alerting.
There are many theories about what a Service Animal dog might be alerting to for POTS and Syncope — some people say scent and chemicals like the adrenaline we release during standing, others say they can hear the heart beating fast.
For Pinky, she was able to alert in seconds to a drop in blood flow to my head, BEFORE my heart responded. I do have Hyperadrenergic POTS and a sharp increase in Blood Pressure during a static stand like this. Can she smell the adrenaline and other catecholamines? Can she hear the Blood Pressure change? Can she watch my “aura” of a loss of Flow to my head?
What do you think?
How does your support animal know to signal an alert?
Either way, I know Pinky is a treasure and she is looking out for my health — brain and body — as a full time manager and coach!
Feel free to share this “Pinky and the Brain” story with a friend who needs a Pinky Nudge!
-Shivani
Note: Consider placing service animals and pets in another room during any intentional stand testing, and instead have an adult present to support you. A Flow Drop may be distressing to your animals, especially if you ignore their alerts. For initial release Lumia ™ will offer a 5 Minute Stand test template, but this can also be done in a sitting upright position for individuals with severe OI. At any time during a Stand Test you can end early if you feel too symptomatic.
