- [Narrator] "Your Fantastic Mind", brought to you in part by Sarah and Jim Kennedy.

(upbeat music) (upbeat music continues) (upbeat music continues) - Welcome to "Your Fantastic Mind".

I'm Jaye Watson.

This week, a promising new approach for sleep apnea.

- I can only remember one time, I think, in the last 20 years where I slept all the way through the night.

- And a condition that causes dizziness and a feeling of movement, and it's not vertigo.

It's something called 3PD.

And when people get the right diagnosis, they get better.

- The goal is to desensitize the brain.

If they have dizziness when they turn their head, then they do that for homework.

- First up this week, every year, nearly 800,000 people in the US have a stroke, but for about a third of them, the cause remains a mystery.

It's called cryptogenic.

Researchers are working to uncover the cause, and this week, we take you inside the lives of two people who had cryptogenic strokes, a young mother, and an internationally known broadcast journalist.

(gentle music) - So in the Iraq War, I was embedded.

I've spent a lot of time embedded.

- [Jaye] Think of any world conflict in the past couple decades, and there's a good chance Martin Savidge was in the middle of it.

(explosion booms) - A number of tours in Afghanistan, Iraq, and then on top of that, the West Bank, Gaza, Lebanon, Syria, Bosnia, Kosovo.

I was at a US base in Southern Iraq.

- [Jaye] One of the most accomplished journalists of his generation, Savidge delivered difficult truths from every corner of the globe.

But it was at home in December of 2021, far from any chaos, that he suffered a stroke at 63 years old.

- It began on a Sunday, and I began feeling an odd sensation in my left leg, and also in my left arm.

I'd never felt anything quite like it, but if I was trying to describe it, I would've said it was feeling like my leg was falling asleep.

It was kind of a numbness, but yet a tingling, and maybe a weakness.

(sirens blaring) - [Jaye] He went to the emergency room the next morning, and a battery of tests showed he'd had a stroke.

- I was dumbfounded.

I was bowled over.

I couldn't believe a stroke.

That's something that happens to other people.

It doesn't happen to me.

(explosion booms) I sort of believed I was invincible, having gone through so much and seen so much.

- It was in December of 2021, and I was in Germany at the time, working there with the Air Force.

- [Jaye] At 33 years old, Joy Lomheim Nguyen was in the middle of a workout when she felt unsteady, numb, that her thoughts were slow.

- The TV was on, so I thought to test myself, the remote was laying there, and it was just the most difficult, laborious task to change the channel.

I physically couldn't do it.

So, you know, I knew something was very, very wrong at that point.

- [Jaye] She FaceTimed her sister, who was a nurse.

- She told me she saw, I mean, difficulty with speech, so that was one of the most obvious things.

And then she told me, too, later, one side of my face was a little kind of paralyzed, or, you know, not moving compared to the other sides.

- [Jaye] Lomheim Nguyen had had a stroke.

What she and Martin Savidge had in common is that they'd had ischemic strokes, the most common type, where lack of blood flow to the brain causes damage or injury.

- Nobody can- - [Jaye] Neurologist Fadi Nahab is the Stroke Quality Director at Emory Healthcare, and a stroke specialist who has participated in and led over 20 clinical trials and other studies regarding cryptogenic stroke.

- You do the workup.

The typical workup would be looking at your arteries of the head and the neck of the person who's had an ischemic stroke.

You'll look at the heart via an ultrasound to look and see if there's a heart related abnormality.

You'll do blood tests to see if the person's diabetic or has high cholesterol.

But literally one third of the time, there is no identified cause of that ischemic stroke, and we call that a cryptogenic stroke.

- I had never really been hospitalized.

- [Jaye] Savidge and Lomheim Nguyen- - They were also- - [Jaye] Were in that one third, which is where Dr. Nahab's research is centered, helping people uncover the root cause.

- A key research focus for me has been on, how can we improve testing?

How can we improve our ability to evaluate patients and figure out very quickly what is that causes a stroke?

What are those tests that we need to do?

What are those tests that all doctors need to do when they are seeing a patient who has a ischemic stroke of undetermined cause, and get to the bottom of it quickly?

- [Jaye] Nahab says there are several causes of cryptogenic strokes.

Clotting disorders, cancer, migraine with aura, genetic brain related causes, mild atherosclerosis in the head or neck, carotid web, autoimmune disorders, aortic atherosclerosis, silent heart arrhythmias, patent foramen ovale, and heart failure with reduced left ventricle pumping function.

- [Fadi] Step one is- - [Jaye] Savidge, fully recovered from his stroke, in testing determined what ultimately caused it.

- You've had a stroke of undetermined cause without clear risk factors.

We then now look and say, well, looks like your clotting activity is quite high, and your lipoprotein A level is quite high, and we know these are factors that are associated with stroke risk.

- [Jaye] Lipo A is a type of cholesterol carrying protein that can contribute to atherosclerotic buildup, increasing inflammation and risk of clotting.

High levels of lipo A are genetic.

- Some studies suggest that in the general population, the lipoprotein A level is elevated in anywhere from 10 to 30% of people.

In cryptogenic stroke patients, our studies have shown that actual lipoprotein A levels are high in over 40% of people.

Lipoprotein A itself has been associated with an increased risk of both heart attack and ischemic stroke.

- The average person would have a level, when tested, of 30 or less.

Mine was 293.

I'm nearly 10 times normal.

Okay, I'm gonna make tea.

- [Jaye] Testing also discovered high levels of protein in Savidge's urine from an autoimmune kidney disorder.

Just three months after his stroke, Savidge was back in the ER because of swelling in his body.

- When I'm there saying, "What's going on with this swelling?

What are we gonna do about that?"

That's when the doctor said, "Right now, we're more concerned with the fact that we believe you've had a heart attack."

And so this is three health maladies in a row.

I clearly had a kidney issue, I had suffered a stroke, and now I'm being told, and just a few months later, "You've also had a heart attack."

It was another huge blow to your psyche, 'cause you're just, oh my gosh, what's gonna come next?

This happens to be a doorknob from one of Saddam Hussein's palaces.

- [Jaye] Doctors said the heart attack was due to the kidney issue.

The pressure from water weight gain put stress on his heart.

Savidge's kidney condition is now in remission.

- The most dangerous place on earth.

- [Jaye] His heart is doing great.

His high lipo A levels are genetic, but there are drugs and clinical trials that are showing promise in reducing levels, and he may be a candidate if they're shown to lower risk of heart attack and stroke.

In the meantime, Savidge lives a healthy lifestyle.

- I exercise even more.

I usually walk several miles a day, and I swim every day.

I have become much more careful with my diet.

I always was.

I stopped drinking.

I don't smoke.

- [Joy] Still, you just have a fear of recurrence, or you just don't know what to expect in the future.

- [Jaye] Physicians in Germany determined Lomheim Nguyen had patent foramen ovale, or PFO, which is a small hole in the heart that didn't close properly after birth.

It can allow blood clots to bypass the lungs and travel to the brain.

While most PFOs are small and have a low risk of causing stroke, Lomheim Nguyen's PFO was large and considered a high risk PFO, associated with an increased risk of stroke.

- What studies over the last decade have shown are that in cryptogenic stroke patients, while we say 25% of people in the population have a PFO that's present, in cryptogenic stroke patients, it's actually 50% of people who have a PFO.

- Oh my goodness.

- [Jaye] Three years after her stroke, now a new mother, Lomheim Nguyen is getting her PFO closed.

(upbeat music) - [Vasilis] We are able to make repair of the heart or the valves.

- [Jaye] Emory interventional cardiologist Vasilis Babaliaros will do the procedure.

- It's this trapdoor idea, because you have a septum that grows from the top of the heart and a septum that grows from the bottom of the heart, and they come together, they're able to trapdoor, but eventually, they should fuse.

In 25% of people, if you were to take an instrument and push on it, they would flop open.

In some people, you can even see it kind of vibrating.

So it's a slit.

It's a potential space for clots to travel from the legs or in the pelvis across to the left side of the heart, that can go up to the brain.

- [Jaye] The procedure involves a thin, flexible tube inserted into the femoral vein in the groin, and guided up to the heart.

Dr. Babaliaros compares the closure device to a button.

- They have some form of fabric and a little bit of metal, and it looks like a two-sided button.

So, we all know what a one-sided button looks like, but if you were to turn it, you know, kind of inside out, you'd see a button on the other side as well.

These products can travel through a long skinny tube, and as we extrude 'em, they make a shape.

The first button we pull against the defect, and we open the second button, and then we detach it.

So, the most minimal of minimally invasive repairs, and this is a procedure that can be done in 20 minutes.

- [Jaye] Lomheim Nguyen is doing well.

So what are the takeaways?

One, to prevent stroke in the first place, with a healthy lifestyle.

The single greatest risk factor is blood pressure, so managing it is key.

- We want people to have a blood pressure where that top number, or systolic number, needs to be less than 130, and that bottom number, or diastolic number, needs to be less than 80.

And why do we do that?

We do that because getting that blood pressure less that 130 over 80 reduces your risk for heart attack, reduces your risk for stroke, and it reduces your risk for dementia.

And so all of these things are so important and come together.

- [Jaye] And if you or someone you love has a stroke, and the cause is cryptogenic, unknown, Dr. Nahab's advice is to seek out the closest stroke center.

- As a patient, if you have been told you have a stroke of undetermined cause, that cannot be sufficient.

You have to go and seek out care at a specialized stroke center that can manage and do the appropriate evaluation.

(upbeat music continues) - It's estimated 30 million people in the US have sleep apnea, but only about 6 million are formally diagnosed.

Well, tonight we take you inside the life of a veteran who is trying to get some sleep for the first time in forever.

We followed him as he underwent a new approach to treat his type of sleep apnea.

(gentle music) - I was in the Army for 24 years, and then got into higher education and did that for right about 20, so.

And now I'm retired.

I retired as a lieutenant colonel.

- [Jaye] At 66 years old, Brett Morris has time to enjoy his home and his dogs and travel with his wife, but there is one thing missing in his life.

Sleep.

- I can only remember one time, I think, in the last 20 years, where I slept all the way through the night.

I mean, literally.

And I woke up, you know, "Wow, this is wonderful," you know?

See, this is my favorite thing.

- [Jaye] Brett was diagnosed with central sleep apnea.

The traditional treatment with a CPAP machine wasn't an option because he doesn't have obstructive sleep apnea, the most common type, that responds to a CPAP.

Brett tried a machine similar to CPAP, but designed for central sleep apnea, and said he couldn't tolerate it.

Director of the Emory Sleep Center, Nancy Collop.

- Apnea means no air, so there's no air, the airway's completely collapsed.

More often what happens is it's a narrowing, and you just can't get sufficient air in and out.

All right, sounds good.

- [Jaye] Brett is among the 15% of people who have central sleep apnea, in which there is no obstruction.

- Central sleep apnea, central being central nervous system, is where the person that has it just pauses, so their breathing stops.

So there's no effort at all.

There's no airflow, there's no effort, they just stop breathing for a period of time.

- [Jaye] a There's no obstruction?

- No obstruction.

(gentle music) - [Jaye] When we are asleep, the brain controls breathing by sending signals down the phrenic nerve to the diaphragm, signaling those muscles to take a breath.

- When the phrenic nerve stimulates the diaphragm, the diaphragm contracts, flattens.

Because of that negative pressure in your chest, basically, you suck air in.

That's how you inhale.

And then when the diaphragm relaxes, you exhale air.

- [Jaye] In central sleep apnea, there is a problem with the signals that interrupts breathing.

Among the underlying causes of central sleep apnea is heart disease, which Brett has.

His sleep studies showed he stopped breathing more than 30 times per hour.

- So that's why I started doing the research and found the Remede, and then discovered that Emory did the Remede.

- [Jaye] Remede is an implantable device for central sleep apnea.

It works by stimulating the phrenic nerve, which helps restore steady breathing.

- I'm a cardiologist, heart doctor, who specializes in the electrical system in the heart.

- How you feeling today, Brett?

- I'm good.

- What we're gonna do today is to try to put in a phrenic nerve stimulator.

So it's a device, it's got a little battery here, and there's gonna be a wire or an electrode that is threaded through a vein, and we're gonna try to place it adjacent to one of the phrenic nerves, either on the left or on the right.

(gentle music) - [Jaye] Emory cardiologist Faisal Merchant is doing Brett's surgery.

He will implant a pulse generator, like a small pacemaker, under the skin in Brett's chest.

A lead, a thin wire, will be placed in a vein near the phrenic nerve to deliver electrical impulses to it, which will prompt the diaphragm to contract, restoring normal breathing, without requiring conscious effort from Brett.

- And then the hope is then that the battery, this, the circuitry in that battery, can then provide the electrical signals to the phrenic nerve, which are not coming from the brain.

The main complexity with this procedure is in placing this electrode, this lead, in an area adjacent to the phrenic nerve, that it can work effectively.

The hope is that we get in there, we find a good pericardiacophrenic vein.

If we do, on the left side.

If we do, we use that, and hopefully that makes the procedure more straightforward.

If he doesn't have a good pericardiacophrenic vein on the left side, then we'll try to put it on the right side.

And on the X-ray machine there, you can see the wires that we're using inside the body.

- [Jaye] Dr.

Merchant searches for his target as we follow along on the screen.

- So now we're gonna start looking for this pericardiacophrenic vein.

Ah, that was it.

- Ah.

- So now we've got our wire where we want it, but we need the vein to be big enough to get us further down.

These electrodes down here are where the electrical current is delivered from, and then this end is gonna hook up to the battery.

- [Jaye] During his efforts, the lead will only go so far into the vein.

Not far enough to do its job.

- Unfortunately, I think his left pericardiacophrenic vein is not gonna be big enough to accommodate a lead.

All right, we're gonna change strategies here and go to plan B.

And that is, we're gonna try to use his right side instead of the left side.

- [Jaye] A short while later, Dr.

Merchant has put the lead in the superior vena cava vein.

- Which is a much, much bigger vessel.

Getting it into a stable position where it's not gonna move is the big challenge.

We've got an option of six electrodes, and we want as many of them to capture the phrenic as possible, so if the thing moves slightly one way or the other, we've got some options.

- [Jaye] With the lead in place and the pacemaker implanted, Brett will heal for the next month and a half.

- For the next six weeks or so, the device is just gonna collect data about his sleep patterns.

We won't be turning it on right now.

In about six weeks, it'll get turned on, and then at night, when he goes to sleep, the device will actually make his diaphragm move and restore a normal breathing pattern at night, and hopefully start to treat the central sleep apnea.

(door knocking) - [Brett] I'm excited about this.

- [Jaye] Dr. Collop explains that the process of activation will be gradual.

- Initially, the shocks will be low.

- If you meet all the criteria, it will initiate.

- Yeah, okay.

- [Jaye] And then the team from Remede go about figuring out the optimal stimulation levels for Brett.

- Between 10 and 11.

- Okay.

- [Jaye] The device has been recording his sleep for six weeks, so it's a matter of finding the level of stimulation that's right for him.

- But what we're looking for is a medium, a normal breath, and then a strong, nice, deep breath.

- [Doctor] Okay, go ahead, exhale.

Okay.

Here comes a pulse.

Breathe in.

Okay.

- Anything?

- Did you feel anything there?

- Okay, that's fine.

- All right.

- [Jaye] The device will be programmed for Brett's bedtime.

(machine beeps) It's not surprising, this initially strange feeling, his diaphragm moving on its own.

- [Doctor] Okay, here comes a few in a row.

All right, exhale.

And again.

(machine beeps) - [Doctor] Okay, I like this as our starting point.

- [Jaye] Brett returns in a few months for another sleep study, where he has fewer episodes of apnea.

But Remede is at work all through the night with every breath.

- You know, I think the quality time that I am asleep is much better than it was before, 'cause, you know, I would get up in the morning and just be almost exhausted and tired all day.

I don't feel that way now when I get up.

You know, I'm a little bit groggy when I wake up, but, you know, I have a lot more energy throughout the day.

(gentle music) - Our final story tonight is about a little known condition that affects a lot of people, except they don't even know because they've never heard of it.

In the field of vestibular disorders, 3PD is often mistaken for vertigo and other balance disorders.

It can look like them, but it's not.

And up to 25% of patients seen in dizziness clinics meet the criteria for 3PD.

Most important, the people who receive this diagnosis can finally get better.

(gentle music) - Better, good.

I started my own camp in clinic program 25 years ago.

(whistle blows) - [Jaye] Basketball has been the center of Ken Potosnak's life for most of his life.

- Basketball was the sport that I sort of took to around at age 11 or 12.

All right, I need the whole group.

- [Jaye] Potosnak played at Randolph-Macon College in Virginia, and then began coaching.

- Citadel to Furman, to Auburn, to South Carolina, to East Carolina, sort of carried me through almost 30 years in Division I basketball.

- [Jaye] 10 years ago, during practice at East Carolina University, it began.

- It was a quick, almost violent turn of my head as a ball was coming towards me and players were coming towards me, and I immediately felt a spinning sort of motion sensation that I'd never felt before.

Participating in all sports was real vital for me growing up.

- [Jaye] Potosnak was diagnosed with benign paroxysmal positional vertigo, a non-life threatening spinning or dizziness that can come on suddenly, and is triggered by changes in head position.

20 to 30% of people who report dizziness are diagnosed with this BPPV.

Potosnak had repositioning movers performed and did physical therapy, but never really got better.

His love and life of basketball was making him sick.

- The visuals, whether it would be a TV screen, watching game tape, rewinding, fast forwarding game tape, maybe you're on a bus doing that on the way to the airport after the game, maybe you're on a flight in a seated position, and what I found out over the course of time, any time that I'm seated or any time that I'm laying down and there's a lot of stimuli, meaning TV, scrolling on a phone, there's been a high chance that it really affects me, and it throws my 3PD into sort of a higher level.

(door knocking) - [Jaye] Seven years and multiple neurologists later, he came to see neurologist Jaffar Khan.

- Good to meet you.

- Dr. Khan, nice to meet you.

- Good to see you.

- [Jaye] The head of Emory Neurology and the Emory Dizziness and Balance Center.

- You know, it took 20 minutes and one test for him to say, you know, "You don't have vertigo."

- Many people are dismissed when they have dizziness and go to their physicians.

And when they go to one physician, that may lead to another physician and another specialist, and after a period of time, it becomes demoralizing.

- My initial episode- - It's most important just to listen to their story, listen to what comes out.

If you don't listen, then you're gonna feed words to a patient and the patient's gonna give them back to you, and you're gonna go down a wrong branch in the algorithm of what they ultimately, truly have.

- [Jaye] Dr. Khan diagnosed Potosnak with 3PD, persistent postural-perceptual dizziness.

For many patients like Ken, it can take years to get an accurate diagnosis, - Someone will tell you, "I get dizzy when I walk down a grocery store aisle."

"I get dizzy when I go down an escalator."

"I get dizzy when I get up from bed and start moving around and getting ready for work, take a shower, moving my head, putting on clothes, bending over."

(gentle music) - [Jaye] In 3PD, your brain stays on alert, overreacting to normal motion or visual input.

Symptoms include a constant feeling of rocking, swaying, or being off balance.

Standing or walking tends to make dizziness worse, while lying and sitting down often helps.

It's triggered by motion, busy visual environments like grocery stores, crowds, scrolling on a phone, driving in traffic, or even watching fast moving TV scenes.

Symptoms can get much worse during certain activities, especially when moving your head, being in a busy place, or being stressed.

3PD is about how the brain is processing balance signals.

It's not a mechanical problem.

Because the condition is so stressful, people often have increased anxiety, which only makes symptoms worse.

- 3PD for me- - [Jaye] When Potosnak had his first episode in 2015, 3PD wasn't even named yet.

It was officially named in 2017 by a group of experts on vestibular disorders.

- We never called it 3PD, but we called it visual motion sensitivity.

So we always had motion sensitivity as part of our therapy, so we worked on it, but not to the extent that we have now.

So always do more than one set.

- [Jaye] Lisa Heusel-Gillig is a specialized vestibular physical therapist and teaches about 3PD and other inner ear conditions internationally.

- And one of the things is, how confident are you in a crowd?

And, you know, that's an easy way to diagnose that they don't like crowds.

The other thing is escalators.

A lot of people with migraines and 3PD don't like escalators.

So we can kind of, you know, move towards knowing what's going on.

And then we do a dizziness handicap questionnaire where it says, do quick head turns bother you?

How about grocery stores?

So, once you do the questionnaires, you can almost diagnose 'em.

All right, so go ahead and turn your head five times side to side.

- [Jaye] Heusel-Gillig is working with people who spent years trying to get better, but it was the wrong diagnosis and treatment.

- I always say that we're starting right now.

You know, you can get better from this point on.

You know, try to not, you know, think about the past.

Two, three.

- [Jaye] The most effective treatment for 3PD is habituation therapy.

- We start off with balance, balance and walking, because they won't walk and turn their head, so our walking test helps us to know whether they're, you know, really apprehensive and hesitant about moving their head, or, like, walking with their eyes closed.

So, that's how we start.

- Five?

- Five.

There's increased activity in, like, the prefrontal lobe, where they have attention, and also in the parts of the brain where and motor systems are, so they're super excited.

And then the vestibular parts of the brain are decreased activity.

So you're not getting any vestibular input, you're getting too much visual input in that part of the brain.

And so what we're trying to do is kind of calm it down and recalibrate the brain.

Problem of being dizzy- - [Jaye] Lisa sees patients typically every one to two weeks for a few months.

- A lot of, "Bend over and just kind of look straight ahead."

They're afraid to move their head.

So that's what they do for homework.

One, two.

- [Jaye] Performing daily home exercises is key to getting better.

- I give 'em walking with head turns, walking with their eyes closed, you know, like, alternating.

I give 'em the cushion with the eyes closed to try to work on forcing the inner ear to work better, and forcing, you know, the somatosensory, the grounding system.

And then I give 'em some habituation exercises.

I have a website, Dr. Khan Videotape Costco.

When people are ready and they're not ready to go to the grocery store, what they do is watch me walking through a grocery store aisle.

So they watch it, you know, small screen first, for like, you know, 15, 20 seconds, and then they get a little dizzy and kind of feel a little bit off, and then we pause it, and then, you know, the symptoms go down.

That's the main part of habituation.

Once you get the symptoms going, you have to go back to baseline.

They're so focused on their vision, we wanna shift their attention.

Try to ground yourself.

- Habituation therapy works because the brain gets used to movements in situations the patient avoided, relearning the proper way of doing things and responding less negatively to motion.

(gentle music) - [Lisa] They start noticing more good days than bad days.

And so over time, over day by day, these symptoms don't bother 'em anymore.

- It's been much more manageable.

And, you know, I'm hoping in the next five or six months, I can get it cleared up where, you know, I can, you know, be more productive at certain times.

- [Jaye] Potosnak is running his basketball clinics and camps around the southeast.

He is on his way to better, and he hasn't had to give up the sport he loves most.

- There's a lot of joy in basketball.

There's a lot of things that you can get out of every sport.

I enjoy trying to be the best teacher I can be.

Turn and face your partner.

- [Jaffar] What we wanna see is that they're freely moving, they're freely engaged in activities, they're not fearful, so we wanna see someone that gets back their life.

(students chattering) (whistle blows) - Thanks for joining us this week.

See you next time on "Your Fantastic Mind".

(upbeat music) (upbeat music continues) - [Narrator] "Your Fantastic Mind", brought to you in part by Sarah and Jim Kennedy.