What Can Difficulty Swallowing and Voice Fatigue Mean? (Ep 152)

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Stacey Menton: [00:00:00] Is that something we could use AI for? Is that something we could actually be like ai, if I talk into it every day, it might pick up that my voice is all of a sudden changing and I will know to, you know, change my medication regimen or whatever it is my doctor's telling me to do.

Dr. Linda Bluestein: Welcome back every bendy body to the Bendy Bodies podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility md. I am so excited to chat with our guest today who is a speech therapist. I have been in speech therapy myself, as we'll be talking about during the show, and I also have seen ENT doctors for recurrent sore throat problems with my nose swallowing problems, et cetera.

I was told on more than one occasion, quote. Connective tissue disorders like EDS do not affect the airway [00:01:00] or swallowing. We know logically that that's not true, but unfortunately, I'm sure a lot of you have heard the same thing as well. Stacey Minton is a speech language pathologist and singing voice specialist at Mayo Clinic in Jacksonville, Florida, who frequently works with hypermobile patients of problems related to voice breathing and swallowing.

Stacey has established an international group of speech pathologists and speech therapists to develop treatment guidelines for voice breathing and swallowing issues in the EDS and HSD population. They're working with Dr. Martin bhl and the EDS Society towards the establishment of an international consortium for ENT.

I'm so excited to have this conversation. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. The views expressed are those of the guests themselves and not the institution they work for. Stick around until the very end, so don't miss any of our special hypermobility hacks.

Here we go.

Okay, I am so [00:02:00] excited to be here with Stacy Minton. Stacy, how are you doing? I'm doing great, thanks. Yes, excellent. Well, I'm so excited to chat with you because I feel like it's so common that people don't know what a speech language therapist does. So it'll be great to introduce the audience to this topic.

And I know you have a very special interest in working with hypermobile patients, and can you tell us how you came upon this interest? 

Stacey Menton: Oh, sure. Um, so I had a couple of patients, um, who were hypermobile come in and start talking to me. They also happened to be researchers. They got me hooked up with the EDS clinic and, um, I've been working with them ever since.

Dr. Linda Bluestein: Can you share some common voice breathing and swallowing complaints that you see in your patients with EDS and HSD? 

Stacey Menton: Yes. So voice issues, a lot of times by hypermobile patients will kind of come [00:03:00] down into this space here called bottle fry. It takes less air to make the vocal folds vibrate in that, uh, placement.

And so we'll see a lot of glottal fry. We see a lot of what's called muscle tension dysphonia, which is just extra muscles that are trying to help the, um, what I think is happening is that they're trying to help the connective tissue do its job. 

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: Um, and then from a swallow standpoint, I think there's a lot of discoordination of the swallow that goes on because of the amount of connective tissue that does exist in the neck.

And that is necessary for the voice box to move up and forward to get the airway out of the way so that the food and liquid can go down into the esophagus, the food pipe in the back. And then with breathing, we see a lot of patients breathing really high, um, into the chest frequently. And I think some of that is also related to the diaphragm, which is [00:04:00] connect the big muscle for breathing right, is, um, connected by connective tissue to the lower rib cage.

So it, it doesn't seem to coordinate quite the same way. And I think we all tend to being hypermobile, we have a tendency to like hold muscle tension in the mm-hmm. Abdomen to try to hold this up. And we need that abdominal wall to be able to be free to really get that low breath that our bodies are looking for.

But, um, more difficult when you're trying to coordinate all of those things and. 

Dr. Linda Bluestein: Yeah, it's kind of an interesting paradox, right, that we're like hypermobile, but at the same time we tend to have areas that are really, really tight. And it's funny that you immediately mentioned glottal Fry because I've been in speech therapy for glottal Fry.

I mean, it wasn't like that was the diagnosis that led me there, but when I had my very first session, they told me I was doing that and then they started trying to work with [00:05:00] me. It was, it was really hard. It was really hard to coordinate and figure out what I was doing and what they wanted me to do differently.

But, um, anyway, it's, it's just such a, an important topic 'cause a lot of us do experience voice fatigue and that was kind of what I was dealing with. I was having a lot of difficulty projecting my voice, using my voice, especially for more than a short period of time. Is that something that you see commonly, like voice fatigue?

Stacey Menton: Absolutely. And I think that that's where like the muscle tension piece tends to come in too. So we're trying to stabilize, we're not moving enough air. And then we're going down on the glottal fry and we're hanging out here 'cause this is just the easier default for us. And yeah, the voice is going to fatigue 'cause you start to incorporate extra muscle to make up for the voice not doing it's supposed to.

Dr. Linda Bluestein: And what about swallowing difficulties? Like what would be some signs that people's swallowing difficulties might be related to EDS? 

Stacey Menton: Well swallowing difficulties in general. The biggest thing to be [00:06:00] watching for is what we call signs and symptoms of aspiration, right? Mm-hmm. So, uh, coughing when you're eating and drinking more than when you are not eating and drinking.

And the reflux piece is also probably a piece of the swallow, um, issues that we see in our hypermobile patients. So we know reflux tends to be more common reflux coming up. It can spill over into the airway that will also make you cough, but that's usually after the meal rather than the moment of the swallow.

Dr. Linda Bluestein: Um, 

Stacey Menton: so we tend to see both. A little bit of discoordination that'll happen. We also never catch that on, in Instru. Almost never catch that on instrumental assessments. So if we do a fiber optic endoscopic evaluation of swallowing of fees, we don't see that very often where something is actually wrong and we can see it.

And then, um, the modified barium swallow studies also almost always come back normal. Mm. But [00:07:00] they're coming back normal, but you're still having symptoms. Um mm-hmm. So from a pragmatic standpoint, I'm still gonna pick the patient up for therapy and we're gonna do a little bit of you, um, maybe reducing how big the meals are, if you're fatiguing with the swallow 'cause we'll see that.

Um, eating. Smaller, more frequent meals throughout the day in an effort to decrease the risk of reflux being an issue or the fatigue factor. And then I really like to recommend things like an oral hold where you put the food or liquid in your mouth and hold it first, transfer when you're ready. Because especially liquids will like to flash flashback pretty frequently.

Interesting. I've never heard of that before. Yeah. Uh, the oral hold is really helpful. And then the other piece we see from a chewing and swallowing standpoint is with the chewing, the TNJ [00:08:00] joint is mm-hmm. Not always working the way it's supposed to. And, um, pain with chewing. So we'll sometimes recommend decreasing the, um, texture just a little bit, so mm-hmm.

Softer solids rather than the really hard crunchy bread or something. 

Dr. Linda Bluestein: Interesting. And the. The imaging studies being normal is such a frustration, right? For, for patients, um, you know, myself included, it's like if you feel like something's wrong, you know something's wrong, um, it can be very frustrating actually when the imaging doesn't, you know, basically jive with what you feel.

And that's really interesting that you're saying that in your experience in this area, that it's actually quite common that the imaging will be come back normal or the, the studies as you were pointing out, even though they truly do have this problem. 

Stacey Menton: Yeah, exactly. I, I feel like it's a common complaint.

Generally. There's always something from an imaging standpoint that doesn't jive with what we're feeling, right? Mm-hmm. [00:09:00] 

Dr. Linda Bluestein: And with swallowing difficulties? Well, I guess, you know, swallowing difficulties, maybe voice difficulties also, but tend to think of swallowing or dysphasia more so, um, it could be hard 'cause you don't know if that's more related to the swallowing apparatus or it could also be related to cervical medullary syndrome.

Like say a person has upper cervical instability or something like that. Mm-hmm. So do you have any thoughts as to how you differentiate that? 

Stacey Menton: I wish I had better research that was out there, but it's not there yet. I'm working on it. But there's, I feel like the rest of my career is going to be devoted to trying to figure all of this out at this point.

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: Um, actually I'm working on a PhD for that reason. 

Dr. Linda Bluestein: Well, that's fantastic. When I see somebody young, young like yourself, I think, oh, this is great that they're interested. 'cause like, you know, the old people like me are gonna need your help someday. For sure. Because, uh, you know, unfortunately I don't have car malformation.

I haven't had those, you know, severe, severe problems. I've definitely had cervical instability that I've dealt with from time to time, but not to the degree that some people have. [00:10:00] It's just, you know, we know that the spectrum right, is like really huge and the way that these conditions present in different people is so variable.

So I'm really excited to hear more about your PhD, um, in a little bit because that is really important. Um, in terms of, you mentioned a couple of studies that you do, but in terms of assessments that you do to evaluate voice, speech and swallowing and people with EDS, can you explain kind of like where you start with that?

Stacey Menton: Yeah, sure. Um, so a lot of times patients are referred to us for all of those things. Mm-hmm. The number of times my EDS patients are coming to me and they have voice breathing, swallowing, and cough issues. Mm. Um, I cannot address all of that in the one hour that I'm given to see each patient. So, um, what I'll end up doing more often than not is, um, just saying, okay, which one is the most important?

And I'll have them rank them. So there's two different [00:11:00] evaluations that I'm going to do. One of them is a swallow evaluation and the other is voice breathing and upper airway or voice breathing and um, cough. Okay. And so when the patient comes in, the first question I have is, which one of these things is the most important today?

'cause we can assess the other next time. Um, if they say swallowing, then I am gonna, more often than not, I'll do, uh, fees, the fiber optic endoscopic evaluation of swallowing. Mm-hmm. And I'll do a clinical swallow eval where I go, where I also spend time going over the instrumental test. Here's what we saw.

You, you know, you said you were feeling things sticking here. You can see things were sticking or there's nothing there, but your sensation is there. Um, then if they say that their bigger issue though is voice breathing and or cough, I have a separate evaluation that I'll do and I ask questions about each one of those things.

So there's a huge amount of history taking, trying to kind of [00:12:00] parse out what symptoms or what and how therapy might be helpful in fixing that. Um, and then with the voice piece, we'll also do something called a laryngeal function study where we're testing aerodynamic and acoustic measures of the voice.

So I have them put a little mask a against their face, and we have them say, Papa pop, Papa around a little straw that's through the mask. Mm. Which measures how much air pressure it takes to make the VOA folds vibrate. Mm. Um, and then we'll also measure air flow itself. How much air can you get out of your lungs?

Is that enough to support voice? Um, and how long you can sustain in awe in terms of, you know, how well are your vocal folds vibrating and closing the way that they're supposed to. And then loudness, pitch and measures of noise in the vocal signal. So that's gonna kind of measure the hoarseness factor.

Dr. Linda Bluestein: And if somebody like myself wanted to send [00:13:00] someone to speech language therapy, can, can we just send them and then you'll do all those tests or coordinate if there's any of those tests that you need to have someone else do, or how does that work? 

Stacey Menton: Yeah. Uh, that's a great question and I think it's probably a different answer depending on which speech pathologist you're working with.

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: As someone who sees these patients frequently, I will coordinate as much as I can. I do need an order from a physician to be able to see a patient. Mm-hmm. So I need some kind of a prescription for speech therapy. Usually it's evaluate and treat and mm-hmm. Number of sessions is per therapist discretion.

Mm-hmm. Um, and then if I'm gonna do like a, if, if the thought process is that I should do some kind of an instrumental swallow exam or a s stroboscopy exam to look at the vibratory pattern of the vocal folds, it can help to have that written there on the prescription from an insurance coverage standpoint.

Okay. Um, [00:14:00] and then the speech pathologist will usually determine what the treatment plan needs to be. The other issue I've run into though, is a lot of speech pathologists aren't as familiar with edfs. 

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: And so the patient comes in and they seem near normal when they walk in. Their voice doesn't sound that bad to them and they don't get picked up.

Right. Um, they eventually do end up in my office and then I hear those stories, uh, and I'm working with a lot of colleagues trying to make sure that we start to provide the education needed to speech pathologists so they recognize that there are still functional deficits, even if the voice doesn't sound that bad, um, quote unquote.

Dr. Linda Bluestein: Yeah. That's such a huge problem. Right. People recognizing that the needs of somebody with Aler Danlos or what another connective tissue disorder, HSD, that we have different needs and that, you know, the person's function might appear okay, but it actually isn't. [00:15:00] Um, this video stroboscopy. Can you explain what that is?

Stacey Menton: Yes, absolutely. Okay. I forgot to mention that one in the, how do I evaluate? Mm-hmm. So, video stroboscopy is a laryngoscopy, meaning we're looking inside the larynx. It's usually done through the nose. So, um, we take a skinny little scope that's like the size of the spaghetti noodle. Um, we numb up the nose with lidocaine and rine, so anesthetize and decongest, and we just run the scope along the floor of the nose and look down at the throat.

Um, most of the exam is done under halogen light, so we're just looking at gross function of the vocal folds. This is the same procedure I would do for the fees that I was mentioning earlier, up until the point where I turn on a strobe light. So about three quarters of the way through my voice exam, I will switch the light source from halogen to the strobe.

And when we switch it to the strobe, the, [00:16:00] there's a little microphone that goes on your neck. That's how you can tell that you've had a, um, s stroboscopy exam and not just a laryngoscopy, they put a little extra microphone on the neck that picks up the vibration of the vocal folds, and it ties it to the frequency of your voice.

So the average, um, feminine sounding voice is gonna be about 220 hertz. So 220 times a second, we can't see that with the naked eye, but if we slow it down with a strobe light that is timed perfectly to slow down the vibratory pattern, it will kind of recreate what the vibra vibratory pattern is looking like over the course of several, like numerous, uh, cycles.

And so we can see the vibration of the vocal folds. A lot of times if we don't do a strobe, we're missing a big part of why somebody might be hoarse. Um, because the vocal folds vibration pattern. Really determines how hoarse your voice is. [00:17:00] 

Dr. Linda Bluestein: And, and I know that you, you know, have your own practice and so you don't know like what other speech language therapists are doing, like all over the country.

But is this something that's, it sounds like, so you're actually doing this study yourself, right? So I have an 

Stacey Menton: amazing team at Mayo. I work with the EDS clinic a whole bunch. Mm-hmm. So I'm lucky in that respect. Um, so I'm not doing this study all by myself. Um, I have a whole bunch of people that work with me to be able to do that.

Dr. Linda Bluestein: Yeah, that's really amazing. 'cause I'm thinking of my evaluation that I had and I didn't have anything like that done. Now I had already seen an ENT and they had done laryngoscopy, um, flexible fiber optic laryngoscopy on me, um, before sending me over. So maybe that's why. But I didn't have any of that strobe or any of the other things that you're mentioning.

Stacey Menton: Speech pathologists can do strobes on their own. Uh, [00:18:00] every state's a little bit different in terms of what they allow us to bill for in terms of insurance. 

Dr. Linda Bluestein: Mm-hmm. Um, 

Stacey Menton: and different provi, different insurance providers are different in what they allow us to bill for. Uh, most commercial insurances though, do cover the speech pathologist doing a s stroboscopy, we're not allowed to diagnose when we're doing a s stroboscopy.

So if I see a lesion and I know that it's a polyp, I'm not allowed to call it a polyp, I just say it's a vocal fold lesion and you need to see a laryngologist for them to tell you what the diagnosis is. 

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: Um, I am allowed to comment a ton on function, which is really what I'm looking at. How I'm looking at the vocal folds is how is everything functioning and how can we realign those subsystems of respiration, phonation, and resonation to work in this patient's favor.

Dr. Linda Bluestein: Okay, so you just mentioned three things, resonation, whatever, whatever those three things were that you just mentioned. Can you explain what those [00:19:00] are? 

Stacey Menton: Yes, absolutely. So they're the three subsystems of voicing. So airflow coming up from the lungs is what sets the vocal folds into vibration. And then the actual vibratory pattern of the vocal folds is ation.

And then the way we hold our mouth, throat in nasal passages is resonation. So you can, you can usually mess the most with respiration and resonation. Phonation tends to be affected by those other two. So if we work on changing resonance patterns, so trying to focus on feeling vibrations up in the front of your face, but not making your voice really, really height or um, or like not making it sound like you have a cold, right?

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: And trying to find that middle ground. How does that feel? Can we keep that feeling going during conversation? Um, so resonation is one of my favorites to kind of. Work with, and then that tends to affect the other two subsystems. Additionally, you can also work on, let's just get the air [00:20:00] flowing. So if I blow up my finger and then turn my voice on, and then try to keep that same amount of air flow going as I'm talking, my voice is going to sound different than it would if I was really, really tight in my throat.

Dr. Linda Bluestein: That's so interesting. Thank goodness we don't have to think about all of that every time we talk. Yes. I, I think, I think that was my biggest challenge when I was in, um, speech and language therapy. It was like, it was like so hard to think of all these things I'm so used to, I've been to in physical therapy since I was a teenager, so like I'm very used to that and, you know, trying to think about the way your body moves and those other ways was so much easier than trying to think of what's happening up, up here, you know, and what's happening in your throat and in your face like you, like you said.

So that's, that's really fascinating 

Stacey Menton: and you can't see it. So you can't see what you're doing in there. That needs to be changed. It's all based on feeling, and my singers usually get the feeling piece pretty quickly. Mm-hmm. But if you're not a [00:21:00] singer, it's a lot more difficult because nobody's ever asked you to focus on those sensations before.

Dr. Linda Bluestein: I'm making a note to myself. I wanna circle back to singers because, um, I, I wanna get into treatment, but I wanna come back to singers because I, as you probably know, I've done a lot of episodes. I've talked a lot about dance, but I have had some singers send me messages and say, Hey, could you talk about singing?

So I would love to, uh, dive into that a little bit, um, a little bit later in the program. So, so right now, if we could pivot to treatment and management. So could you explain how you adapt your therapy approaches for someone with EDS given that their connective tissues are likely more fragile? 

Stacey Menton: So there are certain exercises that we do in speech pathology, um, especially in voice therapy that.

In my experience are not working very well for my hypermobile patients. There is no research out on this either, so we're still working on that. But there's a type of exercise called semi [00:22:00] occluded vocal tract exercises. This is where you are somewhat closing off the mouth, which provides a pressure feedback back to the vocal folds to help them close easier and vibrate easier.

And that sends messages up to the brain that you don't need all those extra muscles to help. Uh, there are certain types of semi occluded vocal tract exercises that work really well for my hypermobile patients. Things like straw donation into a very small amount of water. So you're blowing bubbles and just turning the voice on and trying to get the airflow to cause your vocal folds to vibrate.

And then that pressure feedback is helping them vibrate better, and that's reducing tension all in a very simple, quick, easy exercise. And then there's another version of that that I really like. A good portion of my non-hyper mobile patients is called blow fish, where you're kind of puffing your cheeks up and letting just a little bit of air out of your lips and then you turn your voice on and then, [00:23:00] and then make a lot of noises with that maybe hum, happy birthday like that.

And then that usually realigns things and when the patient starts talking again, it's better. Um, wow. I really like that exercise. But that one seems to have too much pressure feedback for some of my patients. And I have a suspicion that the reason that it doesn't work well for them is because things are not stable here.

And that exercise provides so much pressure feedback that I think it might even potentially cause an retinoid Subluxation. So the vocal, the retinoid cartilage sits on the crico cartilage and it can. Kind of fall off. Now, a hyoid subluxations are considered to be super, super rare, and they're usually caused by some kind of trauma to the neck or traumatic intubation.

However, we we're actually working on publishing a paper right now that will be on [00:24:00] an retinoid Subluxation that happened that was not traumatic for a hypermobile patient. And I suspect it's happening more and more frequently. I'm starting to notice small signs of it on stroboscopy when I'm doing them on my hypermobile patients.

Um, and that a retinoid Subluxation could be one of the things that might, could be one of the things that the, um, is causing the blowfish to be a problem for Some of my patients I've had patients with who are hypermobile and I had to like put my, I would put my hand on their neck and I just very gently manipulate their larynx.

And I, there are times when I'll feel like a quick pop. And all of a sudden their voice is better. While my fingers are holding their, uh, their larynx in that position, within minutes of me taking my fingers away, the voice goes back to what it was. Mm-hmm. And so there's something going on, whether it's the hyoid being kind of like the hyoid is a free floating [00:25:00] bone, but it attaches to these muscles and it's almost like a, like, kind of like a muscular joint that, you know, it's supposed to help move the larynx first.

Swallow. It's supposed to stabilize the larynx to some degree in the throat, and tension affects that. Okay. Let's get back to the, uh, larynx popping. Right. So holding here, sometimes I've started to trial. Use of, um, KT tape with some of my patients, really in an effort to try to just provide just a little bit of stability sometimes even with like a little splint in it to kind of keep things in place.

It's worked, but I haven't done it enough times to say that it's effective yet. Um, I'm struggling to find any, I'm, I'm looking to find anything I can for these patients. 

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: Um, there's just a paucity of available [00:26:00] research to say this is what's effective for this group of patients. Um, and then talking about treatment as well, like exercises that I'm also changing.

There's an exercise I do a lot with my non-hyper mobile patients called tongue out speech. Have them talk with their tongue out and down and say things like, the days of the week, Monday, Tuesday, I swallow and then repeat the same thing. Normally Monday, Tuesday, Wednesday, Thursday usually makes the voice really clear 'cause it reduces face of tongue tension.

The base of the tongue is attached to that hyoid bone and the hyoid, the voice box suspends from that hyoid bone. So reducing that base of tongue tension, we suspect creates more space in the throat. So it basically takes your mouth and throat from being, um, a room with carpet and ceiling tiles back to the cathedral that it's supposed to be.

Dr. Linda Bluestein: Hmm. 

Stacey Menton: Um, and that tongue out speech is really helpful in that respect. But with my hypermobile patients, because there's this concern that there's a bit of a [00:27:00] hyoid issue, I, I'm afraid to say hyoid Subluxation because it's not attached to anything. Right. So it can't really sublux. But this is still like a muscular joint and so that tongue out speech seems to really mess with it for a lot of my hypermobile patients.

So I avoid it more often than not. Um. And I feel like there's just constantly a, we need, every patient is different because this is a spectrum too. So it's, everything has to be individualized to the patient and that's how good speech therapy just should be in general. Mm-hmm. But to individualize it to the patient also from sometimes means having to think very globally on what is the deficit that they have going on and what are the potential underlying, um, issues that might come up if I try this exercise or this exercise.

And if an exercise isn't working, I completely discontinue it. And I [00:28:00] say, maybe we'll address that later, but it's not the most important exercise. We need to get your voice to work for you and this isn't working, so let's find something else. 

Dr. Linda Bluestein: We're gonna try to get an image or something, because as you were talking about the retinoids, and, you know, I'm an anesthesiologist, but I haven't worked in the OR for a while, so, so I'm trying to remember my anatomy of the retinoids and the false chords and the true chords and all this stuff.

And of course, I, I remember what the Ohio it is, but I, of course, most people don't know what any of those things are. So they're gonna hear a retinoid, Subluxation, what, you know, so we'll, we'll try to get an image that we share somewhere if it's not on the social media posts or on the YouTube video. And of course, you were pointing.

So for people who are listening right now, you definitely might wanna check out this portion, at least on the YouTube, uh, channel Bendy Bodies podcast, because I think that's gonna be extra helpful. I, I think I have subluxed my hyoid or my retinoids because I have had only a couple times that this has happened, but where you feel like something really strange in your throat and you're like, and [00:29:00] you didn't eat or anything like that, and you're like, it's, it's.

Really unusual, right? For a bone not to be connected to anything. The hyoid bone being not connected to other bones is a really unusual thing, right? Like pretty much every other bone in the body has joints, right? Where it's connected to other, other bones via ligaments. 

Stacey Menton: It's a wonder, it's also is, um, a frustrating piece of things when someone will say, oh, my hyoid sub subes, or my, you know, my hyoid dislocates.

And I'll go, okay, tell, I, I usually ask like, tell me what you mean by that. What are the symptoms that you have, right? And it's frequently like, my swallow gets all wonky, or my voice declines, or I start to have difficulty breathing. Um, and all of those are possibilities and sometimes it's all three of those things.

Um, and like how to treat that is difficult to [00:30:00] determine at this point. 

Dr. Linda Bluestein: Yeah. And I really encourage people, I mean, I know I just said I think that I've had some of these things happen, but I do really encourage people exactly what you just said, describe what you're feeling. Because sometimes if we do put too much interpretation on it ourselves, then other people get fixated on that and they don't actually try to look for, for the cause or, or we get labeled as, oh my God, this person's crazy.

They think they're subluxing their hyoid, which is probably more likely the case. 

Stacey Menton: Yeah. And I think, I believe my patients now, right? As opposed to, you know, maybe I've been eight years ago, a patient would come into me and be like, this is what's happening. And rather than like just believing them and I would be like, oh, well this seems more functional or this seems like it's more psychosomatic.

Um, I was definitely guilty, at least at some points of, um, gaslighting my patients. Not knowingly, I. Um, and because I've become so much more [00:31:00] aware of EDS and all of this, uh, you know, the pen or the stepdad or whatever you wanna call it, um. I am far more open when a patient comes in and says, this is what's happening.

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: But I am gonna also follow that up with, tell me what the symptoms are that are, that are making you think that that's what's happening. 

Dr. Linda Bluestein: Yeah. There's nothing like firsthand knowledge. Right. It's just, it really changes your perception. It does so significantly. For sure. So significantly. Okay. We are going to take a quick break and when we come back, we are going to talk about some other things that people can do for their, for their swallowing, for their voice, um, what the prognosis is like, how likely are you?

Of course, it depends on the underlying problem, but how likely are you to see benefit doing speech language therapy? And also we'll talk about singing. So we'll be right back.

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We are back with Stacy Minton, speech language therapist. Okay, so let's talk about. Are there risks of these therapies? I thought you said something about the tongue going down towards the chin and then talking, but then I thought maybe you [00:33:00] said you don't do that as much with EDS, and maybe I misheard that.

But could you explain if there's any risks associated with some of these therapies, making symptoms worse in EDS and how you avoid those? 

Stacey Menton: Yes. So the tongue out speech has frequently, not in every case, but frequently been something that causes more difficulty for my hypermobile patients. In a lot of cases, it makes their voices worse.

It is a quick strategy that I use to reduce base of tongue tension, but there are other options. And so for my hypermobile patients, I'm far more likely to talk about things like tongue resting posture. So like keeping your tongue on the roof of your mouth up near the top front teeth, like in that bumpy ridge, it's called the Alveo ridge, letting the tip of your tongue rest there.

And I'll usually tell patients to let the rest of their tongue fall down and back. Sometimes that's uncomfortable. So I'll let them kind of suction cup their, their tongue to the roof of their mouth, but no pressure you're not pushing. That will also reduce base of tongue tension. And the [00:34:00] first iteration of that with just the tip touching that alridge and the rest falling back will reduce, uh, jaw tension as well.

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: Um, there's also a question though of how much tension do these patients need? Do they need a certain amount of tension to hold this area together in terms of like the tongue resting posture? So you wanna try to keep the tip of the tongue against that al branch, let the tongue relax down and back, and then, or that suction cup where you kind of suction cup the tongue to the roof of the mouth.

Mm-hmm. But try to focus on releasing the jaw at that point. The first version of that, um, the tongue. Touching the roof of the mouth and relaxing down and back. That one is more likely, um, to just relax the jaw at first automatically. The other one takes a little bit of thought to make sure you're relaxing [00:35:00] the jaw.

Both of them work. Um, and I have a lot of patients who have found that that helps with their tongue-based tension and that tends to improve vocal quality if we can get rid of the tongue-based tension. Um, so there are risks associated with different exercises we might do. Um, the risks are pretty low.

It's not likely that we're gonna cause some kind of permanent damage with speech therapy exercises, but it's important to make sure that you're advocating for yourself that, Hey, that didn't feel right. I really don't like the way that felt. Is there another option? There almost always is, there's almost always something else that I have in my back pocket that I can go, oh, okay, well, you know.

The airflow exercise we're working on is making you dizzy. Let's not do that one. Let's focus instead on do you feel how your voice is happening up in the front of your face. I want it to stay there. And we start to play around with resonances instead of airflow if they're getting [00:36:00] lightheaded or dizzy or anything like that.

Dr. Linda Bluestein: And that's something I really encounter a lot with patients having physical therapy. They might come back and say to me, well, it made me worse. And I say, well, did you go back to the physical therapist and explain to them that you felt worse after your last session? Because then they can modify the exercises for you.

They can watch your form and figure out maybe you're not doing the exercises correctly. Um, but a lot of times what unfortunately ends up happening is people don't go back, which I also understand, like you feel like it made you worse. So the last thing you wanna do is go back, but. At the same time, if you don't go back, you don't give that therapist the opportunity to modify or again, observe if you're doing the exercises correctly.

So, um, would that apply here as well? 

Stacey Menton: Absolutely. And I think most speech pathologists don't know a lot about EDS and so mm-hmm. They, it makes sense to say, Hey, I, this isn't working really well. How can I make this [00:37:00] better? Is there another option there? There almost always is, and I think it takes you saying, this doesn't like the patient saying this isn't working.

What else can we do? And if they're not sure, they should be able to refer you on to somebody who either knows more about EDS or is more of a voice upper airway specialist. Because speech pathology is very, I mean, we treat from birth to death essentially. 

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: Um, and. We have lots of different specialties.

You know, there are, I have colleagues who work in schools. I have colleagues who work in the hospital with stroke patients. I have patients who, I have colleagues who work with patients with a LS. 

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: Um, and I have, and I myself am warm a voice, upper airway. I'm like the littlest bit of swallowing, uh, specialist.

Dr. Linda Bluestein: Yeah, that's a good point. That there might be a, a, a wide difference. And of course, if someone lives in a bigger city, they could have a lot more access to [00:38:00] different specialists, especially, you know, maybe even within the same, uh, the same group kind of a thing. But if you're in a small town, let's say that you have a speech therapist and, and you live in a smaller town, so there's not a lot of options.

It's not like you have, you know, a choice of five different people with different specialties to, to work with. Do you have any suggestions or are there any resources or anything that a person could bring to their speech therapist to, you know, help them understand what EDS is all about? 

Stacey Menton: Yeah, I mean, I think a lot of this stuff that's actually on your website can be helpful in terms of just explaining what it is.

The EDS society also has a ton of information, and I think providing that kind of information to the therapist and saying, Hey, the, and um, you know, there are several papers that demonstrate the increased prevalence of voice breathing and swallowing issues in this population. Mm-hmm. When we compare it to the general population.

And so taking that information into them, one of them is my paper, so I'm self-serving here, but, um, [00:39:00] but you know, showing that there's this increased risk of this and that things might need to be different because the connective tissue is part of the issue, right? 

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: Um, and then additionally, it's also possible for a patient to say, Hey, you know, if the speech pathologist is like, I don't have anything else to offer you.

Telehealth has become a big thing. Mm mm-hmm. Um, and so being able to see somebody, at least in the state that you're in currently right now, you have to, A lot of states will have the requirement that you have to be licensed in the state that the patient is in for us to be able to see them. That seems like it might be changing sometime this summer, um, where we'll be able to see more patients, um, across state lines because there's this whole interstate compact that about 34 states have signed onto.

Um, so once that goes live, it also might be possible [00:40:00] to see somebody overstate lines. Um, because I'm in Jacksonville, we are very, very close to South Georgia. Like, uh, I can probably get to Georgia in about 30 minutes from where I am right now. Mm. And so my colleague and I got licensed in Georgia. So that we can see these patients virtually when they come to us for, they come to us for an in-person evaluation, and then we can see them virtually for therapy.

Um, so that is another alternative if you're not getting what you feel like you need. 

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: But I am all for educating these speech pathologists as well. 

Dr. Linda Bluestein: Yeah. Yeah. Those are great options and we'll be sure to link those papers in the show notes so people can see what you're talking about. And I think it's great to mention your own paper.

I mean, you know, why not? You're, you're gonna, you're gonna know that better than anybody else, so that's perfectly, perfectly fine. So, um, are there actual guidelines when it comes to treating voice breathing and swallowing [00:41:00] issues in patients with EDS and HSD? 

Stacey Menton: Not currently. Um, but I have a group of colleagues that we're meeting, it's an international group of colleagues.

We meet about quarterly and we're working on a paper for, um. One of the speech pathology journals in an effort to try to, um, create at least some initial guidelines on what we're seeing. 

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: Um, and then, yeah, we've got a lot of stuff in the works there. 

Dr. Linda Bluestein: And are there specific exercises or therapies for voice or swallowing issues that you think are especially helpful for EDS patients?

Stacey Menton: Yeah. Um, so that straw foundation exercise I was talking about before with the bubbles. Mm-hmm. I love that exercise for my hypermobile patients. I also really like some relaxation exercise of some sort. Uh, I guess one of my favorites is something along the lines of like a nons sleep deep [00:42:00] rest. Mm-hmm.

For even if it's as short as like six to eight minutes, the relaxation piece and the fact that it seems to also activate the vagus nerve. Uh. Seems like it also makes their voice better. 'cause the vagus is responsible for a lot of things, but it also innervates the vocal folds and it affects respiration and digestion.

So it kind of affects those three subsystems that I work with the most. Um, so getting the vagus to actually be activated so that the, um, at least I think that's what it's doing. Getting it to activate so that the voice is easier, the breathing tends to become a little bit easier there and swallow sometimes also feels a bit easier.

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: Those are probably my two favorites. 

Dr. Linda Bluestein: Okay. And if you activate your parasympathetic nervous system, and that probably kind of reduces whole body tension, which, you know, probably really affects a lot of these things, I would imagine. Yeah. 

Stacey Menton: Well, [00:43:00] and then my hypermobile patients are also having voice issues because they go into glottal fry because they're in pain.

Right. And because they have, you know, some kind of fatigue factor going on as well, right? So when there's, you know, chronic fatigue syndrome plus, uh, voice issues, plus breathing issues, and you're adding all of this in and you've got chronic pain too. I don't know many people who are talking, who aren't talking down here when they're not feeling well.

Dr. Linda Bluestein: Mm-hmm. Mm-hmm. Um, 

Stacey Menton: I think we just all try to hide it more. And so vocal pacing is also something I work a ton with my patients on. When do you have to use your voice? When can you be quiet and have like a vocal nap? Even if you're not taking a physical nap, can you take a vocal nap for 20 minutes an hour?

Is there a way to make that happen? It's not true for everybody, unfortunately, but if you can, 

Dr. Linda Bluestein: that's so interesting. So vocal nap, is that like, so that's, that's a [00:44:00] fascinating, uh, term I love, I love that. I, I'm thinking is that different from vocal rest? 

Stacey Menton: Yes. 

Dr. Linda Bluestein: Okay. Okay. 

Stacey Menton: Yeah. So vocal rest to me is like, don't talk for hours or days on end.

So the only time I would recommend vocal rest are kind of, there's really probably only two times that I would recommend complete voice rest after surgery on the vocal folds for whatever time laryngologist tells you to. Mm-hmm. And if you have a vocal fold hemorrhage, it's gonna be a couple of weeks of no talking.

Otherwise, vocal pacing is really more the goal, um, and only as needed because there's risk of deconditioning of the muscles inside the larynx, which is gonna actually lead to even more issues. Same is true with swallowing. There's a risk of deconditioning if we're not swallowing. Um, I have a colleague who will tell me, who has told me that he has asked lots of his hypermobile [00:45:00] patients about their swallow.

And they, they sometimes forget to swallow. They don't swallow as frequently as our non-hyper mobile counterparts. Hmm. Which would also lead to deconditioning over time. 

Dr. Linda Bluestein: Wow. There were several things I wanted to pick up in, in there, and I'm trying to remember what all of them are. So one was the deconditioning piece.

That's so interesting. So I'm thinking if someone is chronically ill, and let's say they live alone, they could maybe go Oh, wow. Without talking. So what do they do then? 

Stacey Menton: Voice exercises, read out loud. Talk to the tv. Your cat, your dog, whatever. It's 

Dr. Linda Bluestein: mm-hmm. 

Stacey Menton: Um, talk as you can because then you're still working your voice out.

Mm-hmm. Um, there are, you can do some straw bubbles once an hour or something. Something with the voice turning on doing pitch glides. That kind of thing. Reading out loud is a favorite of mine. [00:46:00] Um, so having a patient read out loud with focus on before deciding to read it out loud, looking through and going, where am I gonna breathe so I can make sure I have enough air to make my vocal folds vibrate?

Um, and then, you know, focusing on can I keep my voice up in the front of my face when I need to, but also recognizing that it, there is nothing pathologic about using bottle fry. We all do it at some point or another, but using it for a long period of time over and over again. Like when you're seeing patients or when you're doing a podcast as you're doing.

You know, as you're doing that over and over and over again, you're talking down here, this gets very fatiguing very quickly. Um, but it's also a protective mechanism from the body. We're trying to protect ourselves from overusing too much energy. How many spoons do you have? 

Dr. Linda Bluestein: And I literally didn't think about that until just this second.

Like, because you're, you're, you're probably so trained to listen to people's voices that you might be listening to my voice and [00:47:00] being like, she still does glut fry. 

Stacey Menton: I don't know. No, no, no. I, I mean, I can't turn it off, but 

Dr. Linda Bluestein: yeah, no, you can't, you can't. I know sometimes I, my family I think would like for me to turn it off.

But you, but you can't. You just can't. Um, can you back up though and tell us again what Glottal Fry is? 'cause we've talked about it a couple times now, but I feel like, I feel like it would be good to just go over what that is again and why we want to avoid it, right. Is that 

Stacey Menton: we don't have to avoid it. We just want, we don't choose when we need it and when we don't.

So, bottle fry is a different kind of vocal fold vibration that requires less air to make the vocal folds vibrate. So it's a self preserving system in some ways because you're ta when you're talking down here in Fry. It doesn't take as much air, it doesn't take as much effort. And if you're already low on spoons that day, it makes sense that your brain is automatically gonna take you there.

But when that becomes the motor plan of choice, when that's what your brain is choosing to [00:48:00] do day in and day out, it is actually fatiguing in and of itself. So using it long term is an ideal, but using it in the instances where you are just trying to communicate what you need to communicate and you don't care what your voice sounds like right now, you just need it to work enough to communicate what you need to get across.

But you can't make glottal fry louder either. So if I'm talking down here in Fry, it's harder to hear me. And when I try to make it louder, all I'm really doing is pushing. But from like a loudness level, it doesn't make it significantly louder. 

Dr. Linda Bluestein: That's so interesting. Um. We haven't even talked yet about mast cell activation syndrome and other concomitant conditions like denomi air pods, postural orthostatic tachycardia syndrome, autoimmune syndromes.

I imagine that all of these also affect the voice breathing and swallowing. Um, I'm sure we could have an entire podcast episode on, on this topic alone, possibly. Um, but, but what should we know about this? [00:49:00] Well, 

Stacey Menton: they're, they're also interconnected, right? Like Right. It's hard to parse out which ones which.

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: But I know with mast cell flares, um, and pots flares, voice tends to come down into glottal fry. Is that because of the pain? Is that because there's more, you know, is there a bit more mucus that day? Like what, what's causing the change? I don't know. 

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: But we're feeling crappy and we're gonna talk down in glottal Fry, um, and then.

You know, with pots, there's also that breathing thing we were talking about where, you know, you need to move more air to make the voice sound where mine is right now. It takes less air to come down here, and that will feel better from a breathing standpoint if you're already feeling lightheaded. Um, I've had singers do voice lessons on the floor in the past.

I let them [00:50:00] just lie down and sing. Mm-hmm. Um, because they show up for their lesson, but they're not prepared to stand for the hour of their lesson. 

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: Um, so it, I think that everybody's a little bit different. I've also had a patient tell me that her voice is the first sign that she's going to have a flare.

Oh, really? And so I think that warrants a ton more, um. A ton more research in an effort to try to figure out is that something we could use AI for? Is that something we could actually be like ai, if I talking to it every day, it might pick up that my voice is all of a sudden changing and I will know to, you know, change my medication regimen or whatever it is my doctor's telling me to do, to be able to make, you know, manage my symptoms better before the flare actually happens.

I think that would be really cool if that's true. 

Dr. Linda Bluestein: And, and are there other strategies that people can use to help prevent [00:51:00] flares or to prevent, you know, voice fatigue and some of these problems that we've talked about? Are there, are there some prevention type strategies or home monitoring that you would recommend?

Stacey Menton: Uh, that's a good question. I dunno that there, I mean as far as being specific to EDS plots, um, I that there are any really good strategies I. Do sometimes have patients record their voices in an effort to be like, Hey, it was really good on Monday in terms of like coming to me with data. Mm-hmm. It can help to have that piece of data for me.

Mm-hmm. It was good on Monday, Tuesday it wasn't so great. And Monday night I had a big fight with my boyfriend, or you know, Tuesday morning I woke up feeling really awful and I still had to go into work anyway and I, my voice was just terrible all day Tuesday, but it got better on Wednesday. So like monitoring that for yourself and seeing if there might be a piece of that.

So you listen to your [00:52:00] voice itself and just go, what am I hearing? Um, it also helps to track improvement with voice.

Right before you started therapy or right around the time you started therapy and the end of therapy. It can be really nice to say, oh, see, I did make progress. Mm-hmm. Because sometimes that progress can be so slow. 

Dr. Linda Bluestein: Yeah. No, I think that's a really good idea. And are there any accommodations that, uh, people should request for work or school settings or modifications or anything that they can do?

Um, especially if they do use, use their voice a lot at work. 

Stacey Menton: Yes. I write those letters fairly regularly. Mm. Um, so things like using a microphone, if you're a teacher, you should be using a microphone every day in your classroom. Really. Um, but they, they would, they make wearable microphones. They're not terribly expensive on Amazon, like a decent one.

Dr. Linda Bluestein: Mm-hmm. But 

Stacey Menton: also, um, you know, [00:53:00] school districts frequently actually will provide these, if they have a letter from a medical provider. Um, so getting the microphone is really important. If your job requires a ton of talking. Um, in some cases it's worth finding a job that requires less talking because you're gonna, if your voice is already fatiguing, it's gonna be really hard to get it to the point where you can talk all day and work in a call center.

Mm-hmm. That's gonna be difficult. Um, sometimes it's a matter of, well, we can write, um, you know, like a, a accommodations letter asking for the, uh, company to allow them to take a five minute break every 30 minutes, and sometimes that'll be acceptable and other companies will be like that. That really too much affects our bottom line.

Um, so I think it just depends on what the issue is there, but, and what the [00:54:00] company's willing to do and what they're required to do by law. 

Dr. Linda Bluestein: Mm-hmm. Yeah. 'cause accommodations have to be reasonable, right? So if you're right, if you're a one person show, um, you're not expected to, you know, build a wheelchair ramp because it might be, like you said, financially, just not, not feasible.

As you were talking about that. Another thing that I was thinking of is, um, water breaks. Like, I know in co even in college, like, uh, they're not always allowed for people to have water on them. But I think that would be something that would also be important if you are, you know, a student in school or I would hope at the workplace you can always have water.

But, um, I wonder if that's something that would also be helpful, because at least for me, I've had a lot of problems like dryness and things like that. Mm-hmm. 

Stacey Menton: Yeah, water is also very important. 'cause hydration helps, the, helps with the vocal folds, um, in terms of mucus, uh, secretions so that the secretions aren't as thick.

If you're hydrated, your [00:55:00] secretions in your throat won't be as thick and that will help your voice. Um. Also, I mean just in general, hydration is so important for the body on the whole. So I think, uh, definitely having the ability to have water, even if it's not something that's allowed, um, generally speaking, but having that accommodation would be helpful.

Um, a lot of it is really that pacing, vocal naps kind of, uh, situation and um, and then being able to use certain exercises as reset buttons for your voice. So that straw, I keep coming back to straw foundation 'cause I like it so much, but that straw foundation exercise is really good at realigning the subsystems of voicing.

So it's something I will encourage my patients to do. Takes 15 seconds to get through the exercise. I'll have 'em do like a glide up, a glide down, a set of three hills and happy birthday through the straw. For, it takes about 15 seconds to get through, [00:56:00] but I'll tell them to do it eight different times per day.

So it's a little reset button each time you're doing it, and then you're resetting your voice. And then as we progress through therapy, we also work on other strategies that can pop the voice back forward so it's not hanging out in feeling like it's down in their throats. So that like sensation of it being back here as opposed to feeling like it's up in the front of your face.

If you can get it up into the front of your face, it, um, it takes all the weight off and that tends to make your voice last longer. So accommodations are really helpful. Also, having things in your back pocket that are really good strategies to make your voice better when you need it to be. 

Dr. Linda Bluestein: And can you explain one more time about the straw and, and like you just mentioned about hills, you, you, you mentioned a couple of 

Stacey Menton: mm-hmm.

Uh, so I meant to have a straw here and I forgot. So you put this jaw in the water, it's just like an inch of water. It's not a ton of water. [00:57:00] Low bubbles. And then you kind of do woo and then three hills, woo, and then hum. A little song, keeping the bubbles going nice and steady the whole way through. 

Dr. Linda Bluestein: Okay.

Okay, great. Excellent. And what are your top couple of tips for singers that are hypermobile? 

Stacey Menton: Try not to like stretch your range further than you should because we find that, uh, hypermobile patients, when we do that stroboscopy we were talking about before, have a tendency to have this very long stretch ability.

And the OIDs tend to move open and closed a lot wider. Uh, but the stretch of the vocal folds, the vocal folds are essentially connective tissue. And so they also can stretch a whole bunch. And if the joints allow for a lot of stretch. I think that's why we see a lot of singers who are hypermobile 

Dr. Linda Bluestein: Well, I was just gonna ask you that.

Yeah. Rage, right? Yeah. Which is 

Stacey Menton: awesome. And also [00:58:00] can be frustrating because the stability is difficult. Um, I've had plenty of singers who did an undergrad in music for voice performance and pedagogy, so opera singing, and they stopped, either they didn't make it all the way through their program or they stopped after the undergrad and decided to go off and do something else because their voice was never stable enough to be able to do all the things.

So, um, there is an amazing group out there right now, um, of singing teachers that are addressing this. Um, they, they just started a new, um, social media campaign called Chronically Singing. Um, it's, it's really impressive what they're doing right now, but they're working on making that. Work for singers so that singers can continue singing and have the careers that they want.

Dr. Linda Bluestein: Fabulous. [00:59:00] We'll look for a link to that and share that in the show notes as well, because I, I'm sure people will be very interested in that. Um, before we wrap up, can you tell us just a little bit more about this international group of speech pathologists that you formed and how you collaborate? 

Stacey Menton: Yes. So, uh, I met the first other speech pathologist other than myself, uh, who, and actually he's a speech language therapist.

He's out in London. Um, I met him through Dr. Knight at Mayo and he connected the two of us. And we, um, we started chatting, talking about. How interested we are about voice breathing and swallowing in this population. And, uh, and then I started talking about it at conferences and found a couple of other like-minded speech pathologists here in the states.

Uh, we've expanded to include two speech pathologists in Australia as well. Mm-hmm. Um, and so meeting is becoming a bit more difficult, but [01:00:00] we're, we're working that out. I think, I think we've determined that our meeting will have to be at seven o'clock in the morning eastern time, um, to be able to accommodate all of the time zones that we have going on.

Mm-hmm. Uh, but we're working on trying to develop these guidelines guide that will help other speech pathologists learn what to do. We're working on education ideas and materials and, um, courses that we can teach, speech pathologists, how to work with the hypermobile population, and we're working on research on what is the.

What are the best options for these patients when it comes to voice breathing, swallowing, and possibly even cognition? 

Dr. Linda Bluestein: Great. Well that's so desperately needed. So I'm so grateful to you for doing that important work and really just appreciate your efforts. 'cause I know that with any of these things, it's always more time consuming than you think it's gonna be.

Especially like you said, trying to coordinate across oceans, [01:01:00] uh, can be, can be very challenging. Um, so as you may know, we always end every episode with a hyper-mobility hack. So do you have a hack you can share with us? 

Stacey Menton: Yes. Um, I think the one that I originally was planning on was the straw coordination, but I think that I've kind of harped on that a whole.

Um, uh, I think, you know, the, honestly, I think that as far as the hypermobility hack, doing things that really help get that low centered breath where you feel like you're, uh. Abdomen is moving away from your spine on the inhale, but your chest isn't significantly moving up and just trying to get that going.

And then slow exhale. 

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: If you do that for a couple of minutes, it's gonna relax all of the muscles around the voice box. It's also going to kind of calm everything down a little bit, and it tends to help, especially when you're [01:02:00] feeling like things aren't working the way you want them to. 

Dr. Linda Bluestein: Okay. And I think you might have given us another hack, um, in, in your guest information, something about sniffing to stop io.

Oh, io. 

Stacey Menton: Oh my goodness. We didn't talk about io. 

Dr. Linda Bluestein: I'm like, I have no idea what ILO is, but it looks kind of cool. I saw it written up Here. 

Stacey Menton: ILO is um, inducible laryngeal obstruction. It is the new name for what used to be called paradoxical vocal fold movement. And before that it was known as vocal cord dysfunction.

Spasm, essentially. Mm-hmm. Okay. But happening throughout the day as opposed to ge during like extubation and um, aspiration. Mm-hmm. So the in inducible laryngeal obstruction, the, the vocal fold slam shut. And because they perceive a threat to the airway, whether that threat is real or not. Mm-hmm. And a lot of times it tends to be things like exercise [01:03:00] or things that seem to also set off mast cells like perfumes, chemical smells, hot air, cold air, dry air, humid air, you name it, um, tends to cause inducible laryngeal obstruction.

And, um, sniffing through the nose actually creates a, causes a brainstem response that will automatically open the vocal fold. So you might have to sniff three to seven times to get the attack to stop. Those attacks can be super scary. Oxygenation is usually normal. If you check O2, it's gonna be in the, you know, mid nineties.

But the sense that you can't get air in and you're making this sound on the inhale, um, is super scary. And if you sniff, sniff, sniff, and then exhale on sh, there's a pressure feedback that keeps the VCA folds open on exhale. Or you could even, uh, blow out through purse slips open and you're blowing the air out of your [01:04:00] mouth slowly.

And then try to take a couple of what we call open throat breaths after that, which is just single breath in through the nose, out through pursed lips. You do about five of those things will settle enough that when you go to talk next, it's not gonna set off another attack. 

Dr. Linda Bluestein: Okay. That's huge. Um, you know, being an anesthesiologist, I of course have seen laryngospasm in a different context, as you said.

And it is terrifying. It is terrifying. Closed, closed vocal cords is a bad, bad thing. Airway, breathing, circulation, airway, airway and breathing. Right, right, right up there. So, um, yes, and I have patients that have this happen to them spontaneously. So this is, this is, that is a huge, huge thing. So you're saying if you feel that, 'cause of course that can be, I think that could be very much, uh, very confusing.

Right. 'cause anaphylaxis can, invo involve swelling and closure of the airway. Mm-hmm. But regardless of which one it is, the [01:05:00] sniffing technique is probably going to be helpful with either one. Of course. In the meantime, maybe if you need an epinephrine pen or something like that, like you can be thinking about getting, getting that as well.

But the sniffing sounds like, I mean, 'cause you always have that available. Right, right. 

Stacey Menton: Right. But the, um, you always have the sniffing available to you. There's other breathing techniques too, but inducible laryngeal obstruction is usually treated by a speech pathologist. So as a voice in the upper airway specialist, the three things I treat the most are voice inducible, laryngeal obstruction slash disordered breathing and chronic cough.

Dr. Linda Bluestein: And, and, um, do you see that inducible inducible laryngeal obstruction? Do you see that very often in this group of patients? 

Stacey Menton: Yes. So actually our research that we published in February of 24, um, I think it was February anyway, when we published that, um, we found, I, it was over, I wanna say it was over 20% of [01:06:00] our EDS clinic patients reported symptoms of this.

Dr. Linda Bluestein: Mm-hmm. 

Stacey Menton: Um, and I am seeing more and more of them now. 

Dr. Linda Bluestein: Wow. That's, that's so interesting. And, um, last, last, last thing. Um, can you tell people where they can learn more about you and if you have any particular research that you're involved with that you haven't already, um, shared with us? 

Stacey Menton: Uh, yeah. So best place to find me is probably, I, I have, um, a professional page on Facebook.

Stacy Menon, soprano slp. 

Dr. Linda Bluestein: Mm. 

Stacey Menton: Um, and technically I think I still have an Instagram that with that same name. Um, I don't check that one as often. So Facebook would be one place. And then, um, I also have a website, Stacy menon do com. Um, and as far as research that I have, we have a lot going on. I.[01:07:00] 

The goal right now is eventually to develop a protocol for patients who are hypermobile, who need voice breathing, swallowing, or um, possibly cognitive therapy. So I have a couple of planned projects related to the development of that. Mm-hmm. Um, and that will probably be the subject of my dissertation.

Dr. Linda Bluestein: Great. Well, well thank you so much, Stacy, for taking the time to chat with me today. This is such an important topic. I know that so often people don't think about how our connective tissues impact our airway and our swallowing and everything. So I'm just so grateful to you for coming on the show and sharing this really, really important information.

Stacey Menton: Thank you so much for having me, and thanks for all.

Dr. Linda Bluestein: Well, I really enjoyed that conversation with Stacy Minton, and I hope you [01:08:00] did as well. Thank you so much for listening to this week's episode of the Bendy Bodies. With the Hypermobility MD Podcast, you can help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast.

This really helps raise awareness about these complex conditions. If you'd like to dig deeper, you can meet with me one-on-one. Check out the available options on the services page of my website@hypermobilitymd.com. You can also find me Dr. Linda Bluestein on Instagram, Facebook, TikTok, Twitter and LinkedIn at Hypermobility md.

You can find human content by producing team at Human Content Pods on TikTok and Instagram. You can find full video episodes up every week on YouTube at Bendy Bodies Podcast. To learn about the Bendy Bodies program, disclaimer and ethics policy submission verification and licensing terms and HIPAA release terms or reach out with any questions, please visit bendy bodies podcast.com.

Bendy Bodies podcast is a huge. Among content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies podcast.[01:09:00] 

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