Episode 25 – Dr. Edgell and the Q-collar

00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive. This is the Standing Up to POTS podcast.

00:30 Jill (Standing Up to POTS): Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook and today I'm excited to speak with a very special expert and researcher who is thinking outside the box for us for ways to help POTS. Dr. Heather Edgell is Associate Professor of Kinesiology and Health Science at York University in Toronto, Canada. She teaches physiology, has held post-doc positions all over the world, and is a prolific publisher of research on all kinds of things related to neurobiology and the autonomic nervous system. Dr. Edgell was a Standing Up to POTS Research Grant recipient because she had an excellent track record for publishing findings relevant to POTS patients, and she had a pretty cool idea for a novel way to potentially help improve POTS symptoms. So, we're excited to hear about that research today, along with anything else she wants to share with us. So, Dr. Edgell, thank you so much for speaking with us today.

1:34 Dr. Edgell (Guest): Thank you for the invitation. It's great to be here virtually and I'm looking forward to the conversation.

1:39 Jill (Standing Up to POTS): So if we could start off really basically, you are a Professor of Kinesiology. What is that?

1:48 Dr. Edgell (Guest): Kinesiology is quite broad, but fundamentally it's the study of the movement of the human body. But it covers all sorts of things from myself, I'm a cardiovascular and autonomic physiologist, there is biomechanics, there are sociocultural aspects, psychological aspects, all about body movement, exercise, that sort of thing.

2:09 Jill (Standing Up to POTS): So that's kind of cool because I had never realized that there were kinesiologists out there who dealt with the nitty gritty. When I read some of your research, I hear about things going on in the body that I never heard about before, and maybe we'll get into it, but that's neat. Are there very many of you in the world?

02:26 Dr. Edgell (Guest): Uh, yeah, there's a there's a number. So at most universities that have a kinesiology or exercise science department, there's usually at least one physiologist tucked away in there. It's not necessarily cardiovascular, but could be muscle health or any sort of other aspect of body movement.

02:44 Jill (Standing Up to POTS): So how did you become interested in POTS?

02:48 Dr. Edgell (Guest): So, my, I guess my history is in my Ph.D. I started doing work with astronauts and space physiology and one of the models for testing that is upright posture. Some people know it as the NASA lean test. So, I got it started mostly on the method and the tilt table testing. And I had always been interested in sex differences in physiology, so men versus women, and I know that POTS is, you know, 80 to 90% women, so that was sort of the track of how I got involved with POTS. It went from space to tilt table testing and to POTS.

03:25 Jill (Standing Up to POTS): When you applied for a grant with Standing Up to POTS, you had a pretty novel idea about something called a Q-collar. Can you explain what that is?

03:36 Dr. Edgell (Guest): Sure. I first saw the Q collar in Canada, at the time we called it the Neuro Shield device. But I think it was a TV ad actually and I was - I saw this device and it would look like a collar that goes around your neck and it squeezes a little bit. And the company was advertising it as a way to prevent long term brain damage from multiple head impacts, mostly for athletes and sports, and whatnot. But I thought to myself that that light pressure on either side of your neck could actually increase your brain blood flow by reducing the blood in your brain from leaving and that increase in brain blood flow could potentially help with the orthostatic symptoms that POTS patients experience.

04:18 Jill (Standing Up to POTS): That is so cool. And can we just back up a second and ask why would this be useful to, say, a football player?

04:26 Dr. Edgell (Guest): The idea is not to stop concussions, per se. But the idea for the company is that they want to increase the volume of blood in the brain and then therefore buffer any sort of brain movement, and therefore prevent any long-term effects of all of those impacts that football and hockey players have on a day-to-day basis.

04:50 Jill (Standing Up to POTS): OK, so just to make sure I understand this correctly and that our listeners understand, the Q-collar puts a little pressure on your neck and it makes the blood still able to get up into your head, but it makes it drain out of your head more slowly.

5:07 Dr. Edgell (Guest): So yes, fundamentally. So we have vessels in the front in the back of our necks, the ones in the back of our necks are structured or in with your vertebrae. So this collar doesn't affect those at all. So you still have blood leaving your brain and you still have blood getting into your brain, because it doesn't affect your arteries, which are the ones that bring blood to your brain. But what it does is it put that light pressure on the jugular veins. And so it is sort of impeding the blood flow through those two, but it's sort of redirecting it out to the back where your spine sort of keeps those veins nice and open and flowing.

05:43 Jill (Standing Up to POTS): So, we often hear the term hypoperfusion in POTS, like the brain is hypoperfused, as in like maybe not getting enough blood pressure. Is that relevant to what you're talking about? Is this supposed to maybe like increase blood pressure in your head?

06:04 Dr. Edgell (Guest): Yes, it's not pressure per se, but more volume, so the amount of blood in there. So your blood pressure isn't necessarily going to be changing, but by preventing or impeding a little bit of the blood from getting out, you're probably going to increase the perfusion of all those little blood vessels that you have in your brain. So you would improve the perfusion of your brain tissue.

06:28 Jill (Standing Up to POTS): OK. So, I just want to maybe pause there for a second for our listeners because I think this is freaking genius, right? [Laughs] If a big part of the problem in POTS has to do with the blood just not getting up to your head and not filling up the blood vessels enough and not perfusing into the brain enough, then that's what made me so excited when I heard your research proposal that, oh my gosh, maybe there actually is a pretty simple way to see what happens if we can get a little more blood to stay in the head.

07:05 Dr. Edgell (Guest): Yes, it's - your brain obviously doesn't want too much blood either. So, it's not like you're building up the blood in your brain and it's not escaping because that would be a problem, too. That would give you a stroke and, and that's obviously not a good thing. But just like a little bit extra blood flow would be a benefit. I guess I'm just gonna send out a warning here is that I don't want people going out and like squeezing their neck and trying things like that, because there's all sorts of sensors in there, and clearly you don't want to stop the blood flow to your brain. Like, this is a collar that does a light amount of pressure, and it shouldn't really be sort of experimented with on your own.

07:42 Jill (Standing Up to POTS): OK. So, fascinating idea though. So can you tell us what was your research study? How did you go about testing this?

07:53 Dr. Edgell (Guest): So, I recruited, in this particular study, I recruited 10 patients. I'm saying "we" 'cause my Master’s student, Massimo Nardone, was also involved. He was the primary author. But, in these 10 patients what we did is we did what most patients would be familiar with in terms of their clinical testing as we did (?) deep breathing, a Valsalva maneuver, and a 10-minute tilt test. And we randomized whether or not the patients would wear the collar or not wear the collar. They did both, but it's just a matter of which one happened 1st. And so we measured heart rate responses, blood pressure responses, some breathing responses, while they were wearing the collar or not. And with these clinical assessments, although I'm not a clinician, we were still doing these clinical assessments, we did find differences in autonomic function as well as the orthostatic symptoms that were experienced after the 10-minute tilt test.

08:48 Jill (Standing Up to POTS): So can you talk more about that? What differences did you see?

08:52 Dr. Edgell (Guest): So we used the - I believe it was the Vanderbilt orthostatic symptom test - and in terms of the improvements in symptoms, in just these 10 patients, we saw significant improvements in blurred vision, tremulousness or shakiness, lightheadedness, and we saw a very close improvement in chest discomfort, but overall we did see decreases in the symptoms or an improvement in the symptoms when patients wore this collar during the tilt table test.

09:21 Jill (Standing UP to POTS): What did the patients say? Was it noticeable to them?

09:26 Dr. Edgell (Guest): Not all of them, but most of them said that they felt better. Anecdotally, one of them said that after he took the collar off and went away and he took the subway downtown, and he said he felt better for like an hour or two afterwards. So, I don't know if that's psychological or whatnot because he wasn't wearing the collar at the time. But in general, everybody felt better wearing the collar - not everybody though, so, I do have to say that.

09:55 Jill (Standing Up to POTS): So, are you planning to do any follow up on this study?

10:01 Dr. Edgell (Guest): For sure, if it's possible. Right now, I'm - my lab is closed due to COVID, but as soon as I get to open it up again, what I'd like to do is continue investigating the collar, and in particular look at blood flow to the back of the brain. So, what I had done in this study is look at blood flow to the middle and front of the brain, and we didn't measure blood flow to the back because of equipment limitations. But, because the running hypothesis is that we're moving blood to the back of the brain, and that's the area that is in charge of vision and shakiness and balance, if we can prove that wearing the collar actually does shuttle the blood to the back, then that would be obviously a good mechanism or a proof that this is what's happening.

10:45 Jill (Standing Up to POTS): Can you talk more about your equipment? How do you measure blood flow in the head?

10:50 Dr. Edgell (Guest): It's based on ultrasound technology. So if it's bigger vessels like in your neck or those ones I was talking about in your spine, you can use an imaging technology like what you see with babies or whatnot, you can actually take a look at the blood vessels and measure how much blood is passing through them. For the ones that are in your brain, that's a little bit more difficult because you can't see it. There's no ultrasound technology that can get in there and tell you how big those blood vessels are. But, you can send what's called Doppler ultrasound, which is a sound signal into an area where you know where the blood vessel is, and it measures the bouncing back of that signal. So, the ultrasound sound shines into your brain, bounces off the blood cells, and comes back. So it tells you how fast your blood is moving. And by knowing how fast it's moving, you can make assumptions of knowing what the flow is doing. So the faster it is, the more flow that you might have going into brain.

11:49 Jill (Standing Up to POTS): That's interesting, have you ever looked at POTS patients versus normal healthy patients with this and do you see differences?

11:59 Dr. Edgell (Guest): I have. There are other people that have done that as well, so I know Julian Stewart - I believe he's in New York - has done quite a bit of that work. And particularly in upright posture there are differences between POTS and non-POTS individuals. I have started doing so in a second study that Standing Up to POTS has funded me for. But that has not been my priority at until now, so. But there are others that have shown that the POTS patients do have inhibited or impaired brain blood flow.

12:32 Jill (Standing Up to POTS): So this is what I love about what you do. I feel like you really get into the nitty gritty of what's going on in POTS. For example, can you talk about what are baroreceptors and what do they have to do with POTS?

12:44 Dr. Edgell (Guest): Sure. So, the baroreceptor is one of your major sensors for maintaining your blood pressure. So their job is to keep your blood pressure at an even keel and not changing. If your blood pressure would be too low, then your baroreceptors would signal your brain and your body via your autonomic nervous system to then try to get your blood pressure back up. If your pressure was too high, it would do the opposite to try and get again your blood pressure to be at that even keel. So, POTS is known now to be an autonomic disorder, or a lot of POTS patients have autonomic dysfunction. Maybe that's a better way to say it. But the baroreceptors also link to a whole bunch of other autonomic reflexes as well as your brain, of course. So those little receptors that are in your neck and right outside of your heart, they can be affecting all sorts of things like your breathing and your blood pressure, and pretty much anything that your autonomic control controls.

13:42 Jill (Standing Up to POTS): So, some of your studies also mentioned something called chemoreceptors. Are those relevant to POTS?

13:48 Dr. Edgell (Guest): I would say yes, that's relevant to POTS. So the chemoreceptors - there's two - these are the ones that detect the amount of oxygen and carbon dioxide that's in your blood. Your primary carbon dioxide detector is your brain and your primary oxygen detector is in the same location as those baroreceptors - so in your neck and just outside of your heart. And again, the work that was done that I believe, again, it was Julian Stewart - I could be wrong - but I believe that work was done where POTS patients have exhibited enhanced chemoreceptor sensitivity. And with this study with the collars, this is now bringing us back to wearing this collar seems to have brought chemoreceptors' function back down to normal - well, at least reduced a little bit. Because what we saw is that wearing the collar actually decreased respiratory rate in POTS patients at rest and at all times. What this implies is that squeezing the neck at that location where all these receptors are that the chemoreflex was also influenced.

14:48 Jill (Standing Up to POTS): So you had mentioned that you are also interested in gender differences in autonomic function. Can I just ask what are some things that stand out to you as interesting about gender differences there?

15:02 Dr. Edgell (Guest): Well, I think I've sort of dedicated my career to looking at those kind of differences. My lab is called the Women’s Cardiovascular Health Lab, so I'm kind of dedicated to always looking at those sex or gender differences. I feel that there's just not enough done. So I think that we actually know very little about what's going on there, and I think that a lot more work needs to be done. Every time I look for a sex or gender difference, there's one there. It's just a matter of looking for it and finding it.

15:33 Jill (Standing Up to POTS): Oh, that's interesting. Are you allowed to speak about anymore of the POTS research - past, present or future - going on in your department?

15:42 Dr. Edgell (Guest): I I do want to follow up with the Q color study like I mentioned. So basically, again, wearing that collar to see if I'm correct in assuming that the blood moves to the back of the brain and then that's helping with the orthostatic tolerance. And the second study which was also funded by you guys [Standing Up to POTS), is looking at the orthostatic symptoms through the menstrual cycle in female patients. And the reason for this is there was a study done by Satish Raj and others and he found that the lightheadedness experienced by POTS patients was worse during certain periods of the menstrual cycle. And I thought to myself that, if that's true, if your heart rate, for example, was also different through the menstrual cycle, you might or might not get a diagnosis, depending on when you actually went to see the doctor. Then this could be a contributing factor to why POTS patients go see how many doctors 12, 10 - whatever, how many doctors that your average POTS patients proposed to see, because maybe you're missing a diagnosis.

16:41 Jill (Standing Up to POTS): Yeah. Well, I can't wait to find out the findings of the rest of your studies. Now I know that you had mentioned that you want people to be careful and not run away with this whole idea of the Q collar too much and go around squeezing their necks. But people probably are wondering, does this have any practical application yet, or is it still a little ways off? Should they be Googling "Q collar" right now? Or should they stay away until the safety is proven or what?

17:09 Dr. Edgell (Guest): Well, it is an FDA and Health Canada approved device. So, the collar itself not going to hurt you. It's approved, it's available online from the company. You buy it. You can wear it. It's not a problem. But, I was just cautioning people not to like do it to themselves and whatnot because that that's not good. But my study was on 10 people. So that you do have to bear with a bit of a grain of salt. There were significant differences there, so it's very promising. But again, the device is FDA Health Canada approved, so if you want to try it out, there's nothing stopping you.

17:43 Jill (Standing Up to POTS): OK. I can hear a lot of people turning off this podcast right now and running to go Google that. I really appreciate how much you think outside the box for solutions for us. Is there some place people can go online if they want to find your articles or more information about your research?

18:03 Dr. Edgell (Guest): So, right now I just have my university website which is York University. So you could go to York University, which is in Toronto and you could find my website there. My articles per say are on Pub Med database, if you know what the Pub Med database is. I'm the only H. Edgell there, so if you type in 'H. Edgell', everything that comes up is me. So that's makes me easier to find.

18:27 Jill (Standing Up to POTS): And I just have one last question for you, which is from your perspective looking at sort of the kinesiology, are there parts of POTS that you think people should be thinking about more or pieces of it or angles of it that are getting overlooked? Or what do you think more people should know about POTS or be studying?

18:48 Dr. Edgell (Guest): Well, I I think everything, to be honest. Like, I think POTS has just been so understudied and it affects so many people more people than have a diagnosis, because again you go see 10 or 12 or however many doctors that that you go see. And I'm sure people have given up and they just live with it. So it affects so many people. So I think absolutely everything needs to be investigated - even sociocultural and stigma aspects need to be investigated. And now a timely factor is COVID survivors are developing POTS or POTS-like symptoms. So with the millions of people that have survived COVID, there's going to be a lot of people that develop POTS-like symptoms. So I think it's very important to get some funding, NIH or whomever, to fund some POTS research.

19:36 Jill (Standing Up to POTS): This could be a good chance for a shameless plug for anybody who wants to donate to Standing Up to POTS. We fund marvelous studies like this where, you know, we really are focused on looking at studies that can help today's POTS patients live better. So there's a lot of studies that probably will lead to amazing things 20-30 years from now, but for POTS patients who are suffering today, we are excited about studies like this that can have an immediate payoff. So we are very excited about what you do.

20:09 Dr. Edgell (Guest): I'm glad to help, however I can.

20:11 Jill (Standing Up to POTS): Dr. Edgell, I can't thank you enough for taking this time with us today. I'm so happy that you saw that TV commercial. I appreciate that you worked so hard to come up with therapy ideas like this and we're excited to hear about your ongoing research findings. We hope you'll come back and give us an update when your next study is finished. And hey listeners, as always, this is never meant as medical advice. Consult your medical team about what's right for you 'cause we're all so different. But thank you for listening. Remember that you're not alone. And please join us again soon.

20:52 Announcer: You can find us wherever you get your podcasts or on our website, www.standinguptopots.org/podcast and I would add if you have any ideas or topics you'd like to suggest, send them in. You can also engage with us on social media at the handle, @standinguptopots. Thanks for listening and we hope you join us. This show is a production of Standing Up to POTS. © 2021 Standing Up to POTS. All rights reserved. [Transcriber’s note: You can request a copy of this transcript or the transcript for any other episode of the POTScast by emailing volunteer@standinguptopots.org.]