What Can Difficulty Swallowing and Voice Fatigue Mean?

[00:30] Dr. Linda Bluestein: 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 change my medication regimen or whatever it is my doctor's telling me to do." Welcome back, every bendy body, to the Bendy Bodies Podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD.
[01:08] I am so excited to chat with our guest today, who is a speech therapist. I have been in speech therapy myself, as we will be talking about during the show, and I also have seen ENT doctors for recurrent sore throat problems with my nose, swallowing problems, etc. I was told on more than one occasion, quote, connective tissue disorders like EDS do not affect the airway or swallowing. We know logically that that's not true, but unfortunately, I'm sure a lot of you have heard this same thing as well.
[01:37] Stacy Menton is a speech-language pathologist and singing voice specialist at Mayo Clinic in Jacksonville, Florida, who frequently works with hypermobile patients on problems related to voice, breathing, and swallowing. Stacy 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 are working with Dr. Martin Burchall and the EDS Society towards the establishment of an international consortium for ENT.
[02:07] I am 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 you don't miss any of our special hypermobility hacks. Here we go.
[02:28] Okay. I am so excited to be here with Stacy Menton. Stacy, how are you doing?

[02:34] Stacy Menton: I'm doing great. Thanks.

[02:36] Dr. Linda Bluestein: 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. Can you tell us how you came upon this interest?

[02:56] Stacy Menton: Sure. So I had a couple of patients 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 I've been working with them ever since.

[03:14] Dr. Linda Bluestein: And can you share some common voice, breathing, and swallowing complaints that you see in your patients with EDS and HSD?

[03:18] Stacy Menton: Yes. So with voice issues, a lot of times my hypermobile patients will kind of come down into this space here called glottal fry. It takes less air to make the vocal folds vibrate in that placement. And so we'll see a lot of glottal fry. We see a lot of what's called muscle tension dysphonia, which is extra muscles that are trying to help — what I think is happening is that they're trying to help the connective tissue do its job.
[03:53] And then from a swallow standpoint, I think there's a lot of miscoordination 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.
[04:11] And then with breathing, we see a lot of patients breathing really high, into the chest frequently. And I think some of that is also related to the diaphragm — the big muscle for breathing — which is connected by connective tissue to the lower rib cage. So it doesn't seem to coordinate quite the same way. And I think we all tend to, being hypermobile, have a tendency to hold muscle tension in the abdomen to try to hold us 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 it's a lot more difficult when you're trying to coordinate all of those things and you're hypermobile.

[05:08] Dr. Linda Bluestein: Yeah. It's kind of an interesting paradox, right? That we're 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 me. 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.
[05:38] But anyway, it's such an important topic because 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?

[05:56] Stacy Menton: Absolutely. And I think that's where 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 in the glottal fry and we're hanging out there because this is just the easier default for us. The voice is going to fatigue because you start to incorporate extra muscle to make up for the voice not doing what it's supposed to.

[06:19] Dr. Linda Bluestein: And what about swallowing difficulties? What would be some signs that people's swallowing difficulties might be related to EDS?

[06:26] Stacy Menton: Well, with swallowing difficulties in general, the biggest thing to be watching for is what we call signs and symptoms of aspiration. So coughing when you're eating and drinking more than when you are not eating and drinking. And the reflux piece is also probably a part of the swallow issues that we see in our hypermobile patients. We know reflux tends to be more common. Reflux coming up can spill over into the airway. That will also make you cough, but that's usually after the meal rather than at the moment of the swallow.
[07:00] So we tend to see both a little bit of discoordination that'll happen. We also almost never catch that on instrumental assessment. So if we do a fiber optic endoscopic evaluation of swallowing — a FEES — we don't see that very often where something is actually wrong and we can see it. And the modified barium swallow studies also almost always come back normal. But they're coming back normal while you're still having symptoms.
[07:33] From a pragmatic standpoint, I'm still going to pick the patient up for therapy and we're going to do things like maybe reducing how big the meals are if you're fatiguing with the swallow, because we'll see that. Or 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, then transfer when you're ready, because liquids especially will flash back pretty frequently.

[08:15] Dr. Linda Bluestein: Interesting. I've never heard of that before.

[08:19] Stacy Menton: Yeah, the oral hold is really helpful. And then the other piece we see from a chewing and swallowing standpoint is with the chewing. The TMJ joint is not always working the way it's supposed to, and there's pain with chewing. So we'll sometimes recommend decreasing the texture just a little bit — softer solids rather than really hard crunchy bread or something.

[08:47] Dr. Linda Bluestein: Interesting. And the imaging studies being normal is such a frustration for patients, myself included. It's like, if you feel like something's wrong, you know something's wrong. It can be very frustrating when the imaging doesn't jive with what you feel. And it's really interesting that you're saying that in your experience in this area, it's quite common that the imaging will come back normal, or the studies as you were pointing out, even though they truly do have this problem.

[09:20] Stacy Menton: Yeah, exactly. 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.

[09:30] Dr. Linda Bluestein: And with swallowing difficulties — well, I guess swallowing or voice difficulties too — but we tend to think of swallowing or dysphagia more so. It could be hard because you don't know if that's more related to the swallowing apparatus or it could also be related to cervical medullary syndrome, like if a person has upper cervical instability or something like that. So do you have any thoughts as to how you differentiate that?

[09:52] Stacy Menton: I wish I had better research that was out there, but it's not there yet. I'm working on it. I feel like the rest of my career is going to be devoted to trying to figure all of this out at this point. Actually, I'm working on a PhD for that reason.

[10:07] Dr. Linda Bluestein: Well, that's fantastic. When I see someone young like yourself, I think, oh, this is great that they're interested. Because the old people like me are going to need your help someday for sure. I fortunately don't have Chiari malformation, and I haven't had those 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. We know that the spectrum is really huge, and the way that these conditions present in different people is so variable.
[10:36] So I'm really excited to hear more about your PhD in a little bit, because that is really important. In terms of assessments — you mentioned a couple of studies that you do — but in terms of assessments that you do to evaluate voice, speech, and swallowing in people with EDS, can you explain kind of where you start with that?

[10:56] Stacy Menton: Yeah, sure. So a lot of times patients are referred to us for all of those things. The number of times my EDS patients are coming to me with voice, breathing, swallowing, and cough issues — I cannot address all of that in the one hour that I'm given to see each patient. So what I'll end up doing more often than not is just saying, okay, which one is the most important? And I'll have them rank them.
There are two different 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 cough.
[11:42] When the patient comes in, the first question I have is: which one of these things is the most important today? Because we can assess the other one next time.
[11:51] If they say swallowing, then more often than not I'll do a FEES — the fiber optic endoscopic evaluation of swallowing. And I'll do a clinical swallow eval where I also spend time going over the instrumental test. Here's what we saw. You said you were feeling things sticking here. You can see things were sticking, or there's nothing there but your sensation is there.
[12:17] If they say their bigger issue 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 parse out what symptoms are what and how therapy might be helpful in fixing that.
[12:33] 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 against their face and we have them say pa pa pa pa around a little straw that's through the mask, which measures how much air pressure it takes to make the vocal folds vibrate. And then we'll also measure airflow itself — how much air can you get out of your lungs? Is that enough to support voice? And how long you can sustain an "ah" in terms of how well your vocal folds are vibrating and closing the way that they're supposed to. And then loudness, pitch, and measures of noise in the vocal signal, which is going to measure the hoarseness factor.

[13:27] Dr. Linda Bluestein: And if somebody like myself wanted to send someone to speech language therapy, 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?

[13:40] Stacy Menton: Yeah, that's a great question. I think it's probably a different answer depending on which speech pathologist you're working with. 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. So I need some kind of a prescription for speech therapy. Usually it's "evaluate and treat," and number of sessions is per therapist discretion.
[14:02] And then if I'm going to do some kind of an instrumental swallow exam or a stroboscopy exam to look at the vibratory patterns of vocal folds, it can help to have that written on the prescription from an insurance coverage standpoint.
[14:24] The speech pathologist will usually determine what the treatment plan needs to be. The other issue I've run into though is that a lot of speech pathologists aren't as familiar with EDS. And so the patient comes in and they seem near normal when they walk in, their voice doesn't sound that bad, and they don't get picked up. They eventually do end up in my office and then I hear those stories.
[14:58] 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 — quote unquote.

[15:15] Dr. Linda Bluestein: Yeah, that's such a huge problem, right? People recognizing that the needs of somebody with Ehlers-Danlos or another connective tissue disorder or HSD are different, and that the person's function might appear okay but actually isn't. This video stroboscopy — can you explain what that is?

[15:35] Stacy Menton: Yes, absolutely. I forgot to mention that one in the "how do I evaluate" section. So video stroboscopy is a laryngoscopy, meaning we're looking inside the larynx. It's usually done through the nose. So we take a skinny little scope that's like the size of a spaghetti noodle. We numb up the nose with lidocaine and Afrin — so anesthetize and decongest — and we just run the scope along the floor of the nose and look down at the throat.
[16:06] 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.
[16:27] When we switch it to the strobe, there's a little microphone that goes on your neck — that's how you can tell that you've had a 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 times it to the frequency of your voice. So the average feminine-sounding voice is going to be about 220 Hz — 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 recreate what the vibratory pattern is looking like over the course of numerous cycles. And so we can see the vibration of the vocal folds.
[17:15] A lot of times if we don't do a strobe, we're missing a big part of why somebody might be hoarse, because the vocal fold vibration pattern really determines how hoarse your voice is.

[17:32] Dr. Linda Bluestein: And I know that you have your own practice, so you don't know what other speech language therapists are doing all over the country, but is this — it sounds like you're actually doing this study yourself, right?

[17:46] Stacy Menton: I have an amazing team at Mayo. I work with the EDS clinic a whole bunch, so I'm lucky in that respect. I'm not doing this all by myself. I have a whole bunch of people that work with me to be able to do that.

[18:02] Dr. Linda Bluestein: Yeah, that's really amazing because 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 flexible fiber optic laryngoscopy on me 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.

[18:24] Stacy Menton: Speech pathologists can do strobes on their own. Every state's a little bit different in terms of what they allow us to bill for in terms of insurance, and different insurance providers differ in what they allow us to bill for. Most commercial insurances do cover the speech pathologist doing a stroboscopy. We're not allowed to diagnose when we're doing a 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.
[19:04] I am allowed to comment a ton on function, which is really what I'm looking at — how is everything functioning and how can we realign those subsystems of respiration, phonation, and resonation to work in this patient's favor?

[19:22] Dr. Linda Bluestein: Okay. You just mentioned three things — resonation and the others. Can you explain what those are?

[19:30] Stacy Menton: Yes, absolutely. So they're the three subsystems of voicing. Airflow coming up from the lungs is what sets the vocal folds into vibration. The actual vibratory pattern of the vocal folds is phonation. And then the way we hold our mouth, throat, and nasal passages is resonation.
[19:48] 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 — trying to focus on feeling vibrations up in the front of your face, but not making your voice really high or nasal, not making it sound like you have a cold — and trying to find that middle ground. How does that feel? Can we keep that feeling going during conversation? Resonation is one of my favorites to work with, and then that tends to affect the other two subsystems.
[20:27] Additionally, you can also just work on getting the air flowing. So if I blow at my finger and then turn my voice on, and then try to keep that same amount of airflow going as I'm talking, my voice is going to sound different than it would if I was really, really tight in my throat.

[20:44] Dr. Linda Bluestein: That's so interesting. Thank goodness we don't have to think about all of that every time we talk.

[20:49] Stacy Menton: Yes.

[20:51] Dr. Linda Bluestein: I think that was my biggest challenge when I was in speech and language therapy. It was so hard to think of all these things. I've been in physical therapy since I was a teenager, so I'm very used to trying to think about the way your body moves in those other ways — that was so much easier than trying to think of what's happening up here in your throat and in your face. So that's really fascinating.

[21:13] Stacy 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. But if you're not a singer, it's a lot more difficult because nobody's ever asked you to focus on those sensations before.

[21:35] Dr. Linda Bluestein: I'm making a note to myself. I want to circle back to singers because I want to get into treatment, but I want to come back to singers because, as you probably know, I've done a lot of episodes and talked a lot about dance, but I have had some singers send me messages saying, "Hey, could you talk about singing?" So I would love to dive into that a little bit later in the program.
[21:57] So right now, if we could pivot to treatment and management — could you explain how you adapt your therapy approaches for someone with EDS, given that their connective tissues are likely more fragile?

[22:09] Stacy Menton: So there are certain exercises that we do in speech pathology, 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.
[22:27] But there's a type of exercise called semi-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.
[22:46] There are certain types of semi-occluded vocal tract exercises that work really well for my hypermobile patients — things like straw phonation 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.
[23:05] And then there's another version of that that I really like for a good portion of my non-hypermobile patients. It's called blowfish, 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 make a lot of noises with that — maybe hum Happy Birthday like that — and then that usually realigns things. When the patient starts talking again, it's better.
[23:42] 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 it doesn't work well for them is because things are not stable here. That exercise provides so much pressure feedback that I think it might even potentially cause an arytenoid subluxation. The arytenoid cartilage sits on the cricoid cartilage and it can kind of fall off. Now, arytenoid subluxations are considered to be super, super rare, and they're usually caused by some kind of trauma to the neck or a traumatic intubation. However, we're actually working on publishing a paper right now about an arytenoid subluxation that happened non-traumatically in 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.
[24:45] That arytenoid subluxation could be one of the things causing the blowfish to be a problem for some of my patients. I've had patients who are hypermobile where I would put my hand on their neck and very gently manipulate their larynx. And there are times when I'll feel a quick pop and all of a sudden their voice is better while my fingers are holding their larynx in that position. Within minutes of me taking my fingers away, the voice goes back to what it was.
[25:22] And so there's something going on, whether it's the hyoid — the hyoid is a free-floating bone, but it attaches to these muscles and it's almost like a muscular joint that's supposed to help move the larynx for swallow and stabilize the larynx in the throat, and tension affects that.
[25:49] Let's get back to the larynx popping. Sometimes I've started to trial use of KT tape with some of my patients, really in an effort to try to provide just a little bit of stability. Sometimes even with 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. I'm struggling to find anything I can for these patients. There's just a paucity of available research to say this is what's effective for this group of patients.
[26:34] And then talking about treatment as well — exercises that I'm also changing — there's an exercise I do a lot with my non-hypermobile 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, Wednesday, swallow, and then repeat the same thing normally. Monday, Tuesday, Wednesday, Thursday. That usually makes the voice really clear because it reduces base-of-tongue tension. And the base of the tongue is attached to that hyoid bone, and the voice box suspends from that hyoid bone. So reducing that base-of-tongue tension creates more space in the throat. It basically takes your mouth and throat from being a room with carpet and ceiling tiles back to the cathedral that it's supposed to be.
[27:24] But with my hypermobile patients, because there's this concern that there's a bit of a hyoid issue — I'm afraid to say hyoid subluxation because it's not attached to anything, 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.
[27:50] I feel like every patient is different because this is a spectrum too. Everything has to be individualized to the patient, and that's how good speech therapy just should be in general. But to individualize it also sometimes means thinking very globally about what the deficit is and what are the potential underlying issues that might come up if I try this exercise or that exercise. And if an exercise isn't working, I completely discontinue it. I 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.

[28:38] Dr. Linda Bluestein: We're going to try to get an image or something because as you were talking about the arytenoids — and I'm an anesthesiologist, but I haven't worked in the OR for a while, so I'm trying to remember my anatomy of the arytenoids and the false cords and the true cords and all this stuff. And of course I remember what the hyoid is, but most people don't know what any of those things are. So they're going to hear "arytenoid subluxation" and think, what? We'll try to get an image that we share somewhere, whether in 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 want to check out this portion at least on the YouTube channel, Bendy Bodies Podcast, because I think that's going to be extra helpful.
[29:17] I think I have subluxed my hyoid or my arytenoids because I have had — only a couple of times — where you feel like something really strange in your throat and you're like, hmm, and you didn't eat anything or anything like that. It's really unusual, right? For a bone not to be connected to anything. The hyoid bone being unconnected to other bones is a really unusual thing. Pretty much every other bone in the body has joints where it's connected to other bones via ligaments.

[29:47] Stacy Menton: It's a wonder. It also is a frustrating piece of things when someone will say, "My hyoid subluxes" or "my hyoid dislocates." I'll usually ask them, tell me what you mean by that. What are the symptoms that you have? And it's frequently like, my swallow gets all wonky, or my voice declines, or I start to have difficulty breathing. And all of those are possibilities. Sometimes it's all three of those things. And how to treat that is difficult to determine at this point.

[30:32] Dr. Linda Bluestein: Yeah. And I really encourage people — I know I just said I think I've had some of these things happen — but I do really encourage people to do exactly what you just said. Describe what you're feeling, because sometimes if we put too much interpretation on it ourselves, then other people get fixated on that and they don't actually try to look for the cause. 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.

[30:57] Stacy Menton: Yeah. And I believe my patients now, as opposed to maybe 7 or 8 years ago, when a patient would come in and be like, "This is what's happening," and rather than just believing them, I would be like, "Oh, well, this seems more functional," or "This seems like it's more psychosomatic." I was definitely guilty, at least at some points, of gaslighting my patients — not knowingly. But because I've become so much more aware of EDS and all of this — the pentad or the septad or whatever you want to call it — I am far more open when a patient comes in and says, "This is what's happening." But I am going to also follow that up with, "Tell me what the symptoms are that are making you think that's what's happening."

[31:49] Dr. Linda Bluestein: Yeah, there's nothing like firsthand knowledge. It really changes your perception so significantly.

[31:52] Stacy Menton: It does, for sure.

[31:54] Dr. Linda Bluestein: 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 swallowing and their voice, what the prognosis is — of course it depends on the underlying problem — but how likely are you to see benefit from doing speech language therapy? And also we'll talk about singing. So we'll be right back.

[33:41] Dr. Linda Bluestein: We are back with Stacy Menton, speech language therapist. Okay, so let's talk about 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 said you don't do that as much with EDS. Could you explain if there are any risks associated with some of these therapies making symptoms worse in EDS and how you avoid those?

[34:06] Stacy 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 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.
[34:30] So keeping your tongue on the roof of your mouth up near the top front teeth — in that bumpy ridge, it's called the alveolar 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 tongue to the roof of their mouth, but with no pressure — you're not pushing. That will also reduce base-of-tongue tension. And the first iteration of that, with just the tip touching that alveolar ridge and the rest falling back, will reduce jaw tension as well.
[35:05] There's also a question though of how much tension these patients need. Do they need a certain amount of tension to hold this area together? In terms of the tongue resting posture, you want to try to keep the tip of the tongue against that alveolar ridge and let the tongue relax down and back. Or that suction cup where you kind of suction cup the tongue to the roof of the mouth — try to focus on releasing the jaw at that point. The first version, the tongue touching the roof of the mouth and relaxing down and back, is more likely to just relax the jaw automatically. The other one takes a little bit of thought to make sure you're relaxing the jaw. Both of them work, 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.
[36:09] So there are risks associated with different exercises we might do, but the risks are pretty low. It's not likely that we're going to cause some kind of permanent damage with speech therapy exercises. But it's important to make sure that you're advocating for yourself — that you say, "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 I have in my back pocket. 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 resonance instead of airflow if they're getting lightheaded or dizzy or anything like that.

[36:59] 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, "It made me worse." And I say, "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. But a lot of times what unfortunately ends up happening is people don't go back — which I also understand, because if you feel like it made you worse, the last thing you want to 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 observe whether you're doing the exercises correctly. Would that apply here as well?

[37:43] Stacy Menton: Absolutely. And I think most speech pathologists don't know a lot about EDS, so it makes sense to say, "Hey, this isn't working really well. How can we make this better? Is there another option?" There almost always is. And I think it takes 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 and upper airway specialist, because speech pathology is very broad. I mean, we treat from birth to death essentially.
[38:19] We have lots of different specialties. I have colleagues who work in schools, colleagues who work in the hospital with stroke patients, colleagues who work with patients with ALS. And I myself am more of a voice, upper airway, and the littlest bit of swallowing specialist.

[38:47] Dr. Linda Bluestein: Yeah, that's a good point that there might be a wide difference. And of course, if someone lives in a bigger city, they could have a lot more access to different specialists, maybe even within the same group. But if you're in a small town and there's not a lot of options — it's not like you have a choice of five different people with different specialties to work with — do you have any suggestions? Are there any resources or anything that a person could bring to their speech therapist to help them understand what EDS is all about?

[39:23] Stacy Menton: Yeah. I think a lot of 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, "There are several papers that demonstrate the increased prevalence of voice, breathing, and swallowing issues in this population when we compare it to the general population." And so taking that information to them — one of them's my paper, so I'm being self-serving here, but showing that there's this increased risk and that things might need to be different because connective tissue is part of the issue.
[40:08] And then additionally, it's also possible for a patient to say, if the speech pathologist is like, "I don't have anything else to offer you" — telehealth has become a big thing. And so being able to see somebody, at least in the state that you're in currently. Right now, a lot of states have the requirement that you have to be licensed in the state that the patient is in. But that seems like it might be changing sometime this summer, where we'll be able to see more patients across state lines because there's this whole interstate compact that about 34 states have signed on to.
[40:52] Once that goes live, it might also be possible to see somebody over state lines. Because I'm in Jacksonville, we are very, very close to South Georgia — I can probably get to Georgia in about 30 minutes from where I am right now. And so my colleague and I got licensed in Georgia so that we can see these patients virtually when they come to us for an in-person evaluation and then follow up virtually for therapy. So that is another alternative if you're not getting what you feel like you need. But I am all for educating these speech pathologists as well.

[41:33] Dr. Linda Bluestein: 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 — you're going to know that better than anybody else. So that's perfectly fine.
[41:46] So are there actual guidelines when it comes to treating voice, breathing, and swallowing issues in patients with EDS and HSD?

[41:58] Stacy Menton: Not currently. But I have a group of colleagues and we meet about quarterly — it's an international group. We're working on a paper for one of the speech pathology journals in an effort to try to create at least some initial guidelines on what we're seeing. And we've got a lot of stuff in the works there.

[42:22] Dr. Linda Bluestein: And are there specific exercises or therapies for voice or swallowing issues that you think are especially helpful for EDS patients?

[42:35] Stacy Menton: Yeah. So that straw phonation exercise I was talking about before with the bubbles — I love that exercise for my hypermobile patients. I also really like some kind of relaxation exercise. One of my favorites is something along the lines of a non-sleep deep rest, even if it's as short as 6 to 8 minutes. The relaxation piece and the fact that it seems to also activate the vagus nerve — it seems like it also makes their voice better, because 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. Getting the vagus activated so that the voice is easier — the breathing tends to become a little bit easier too, and swallow sometimes also feels a bit easier. Those are probably my two favorites.

[43:45] Dr. Linda Bluestein: Okay. And if you activate your parasympathetic nervous system, that probably reduces whole-body tension, which probably really affects a lot of these things, I would imagine.

[43:54] Stacy Menton: Yeah. Well, my hypermobile patients are also having voice issues because they go into glottal fry because they're in pain, and because they have some kind of fatigue factor going on as well. So when there's chronic fatigue syndrome plus voice issues plus breathing issues, and you've got chronic pain too — I don't know many people who aren't talking down here when they're not feeling well. I think we all just try to hide it more.
[44:29] And so vocal pacing is also something I work on a ton with my patients. When do you have to use your voice? When can you be quiet and have 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.

[44:50] Dr. Linda Bluestein: That's so interesting. So vocal nap — that's a fascinating term. I love that. And I'm thinking, is that different from vocal rest?

[45:01] Stacy Menton: Yes.

[45:02] Dr. Linda Bluestein: Okay.

[45:03] Stacy Menton: Yeah. So vocal rest to me is like, don't talk for hours or days on end. The only times I would recommend complete voice rest are really only two: after surgery on the vocal folds, for whatever time your laryngologist tells you to, and if you have a vocal fold hemorrhage — it's going to be a couple of weeks of no talking. Otherwise, vocal pacing is really more the goal, and only as needed, because there's risk of deconditioning of the muscles inside the larynx, which is going to actually lead to even more issues.
[45:40] The same is true with swallowing. There's a risk of deconditioning if we're not swallowing. And I have a colleague who has told me that he has asked lots of his hypermobile patients about their swallow, and they sometimes forget to swallow. They don't swallow as frequently as our non-hypermobile counterparts, which would also lead to deconditioning over time.

[46:12] Dr. Linda Bluestein: Wow. There were several things I wanted to pick up on in there. So one was the deconditioning piece — that's so interesting. I'm thinking if someone is chronically ill and let's say they live alone, they could maybe go a while without talking. So what do they do then?

[46:31] Stacy Menton: Voice exercises, read out loud, talk to the TV, your cat, your dog, whatever it is. Talk as you can, because then you're still working your voice out. You can do some straw bubbles once an hour or so — something with the voice turning on, doing pitch glides, that kind of thing. Reading out loud is a favorite of mine. So having a patient read out loud with focus on, before deciding to read it out loud, looking through and going, where am I going to breathe so I can make sure I have enough air to make my vocal folds vibrate? And then focusing on, can I keep my voice up in the front of my face when I need to?
[47:14] But also recognizing that there is nothing pathologic about using glottal 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 — you're talking down here, and this gets very fatiguing very quickly. It's also a protective mechanism for the body. We're trying to protect ourselves from overusing too much energy. How many spoons do you have?

[47:46] Dr. Linda Bluestein: And I literally didn't think about that until just this second. Because you're probably so trained to listen to people's voices that you might be listening to my voice and being like, she still does glottal fry. I don't know.

[47:58] Stacy Menton: No, no. I mean, I can't turn it off, but no.

[48:03] Dr. Linda Bluestein: You can't. I know sometimes my family would like for me to turn it off, but you just can't. Can you back up though and tell us again what glottal fry is? Because we've talked about it a couple of times now, and I feel like it would be good to just go over what that is again and why we want to avoid it. Is that—

[48:20] Stacy Menton: We don't have to avoid it. We just want to choose when we need it and when we don't. So glottal 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 when you're talking down here in glottal fry, it doesn't take as much air and 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 going to take you there.
[48:50] But when that becomes the motor plan of choice — when that's what your brain is choosing to do day in and day out — it is actually fatiguing in and of itself. So using it long-term isn't ideal, but using it in 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 — that's fine. You just need it to work enough to get across what you need to communicate. But you can't make glottal fry louder either. So if I'm talking down here in glottal fry, it's harder to hear me. And when I try to make it louder, all I'm really doing is pushing, but from a loudness level, it doesn't make it significantly louder.

[49:28] Dr. Linda Bluestein: That's so interesting. We haven't even talked yet about mast cell activation syndrome and other concomitant conditions like dysautonomia or POTS — postural orthostatic tachycardia syndrome — autoimmune syndromes. I imagine that all of these also affect the voice, breathing, and swallowing. I'm sure we could have an entire podcast episode on this topic alone. But what should we know about this?

[49:55] Stacy Menton: Well, they're all so interconnected. It's hard to parse out which one's which. But I know with mast cell flares and POTS flares, voice tends to come down into glottal fry. Is that because of the pain? Is there a bit more mucus that day? What's causing the change? I don't know.
But we're feeling unwell and we're going to talk down in glottal fry. And then with POTS, there's also that breathing thing we were talking about — 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.
[50:49] I've had singers do voice lessons on the floor in the past. I let them just lie down and sing, because they show up for their lesson but they're not prepared to stand for the hour of their lesson. I think everybody's a little bit different.
[51:11] I've also had a patient tell me that her voice is the first sign that she's going to have a flare. And so I think that warrants 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 talk into it every day, it might pick up that my voice is suddenly changing, and I will know to change my medication regimen or whatever it is my doctor's telling me to do to manage my symptoms better before the flare actually happens. I think that would be really cool if that's true.

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

[52:05] Stacy Menton: That's a good question. I don't know that there are, as far as being specific to EDS, POTS, and MCAS. I do sometimes have patients record their voices in an effort to — hey, it was really good on Monday. In terms of coming to me with data, it can help to have that piece of data. It was good on Monday, Tuesday it wasn't so great, and Monday night I had a big fight with my boyfriend. Or Tuesday morning I woke up feeling really awful and still had to go into work anyway, and my voice was just terrible all day Tuesday but it got better on Wednesday. Monitoring that for yourself and seeing if there might be a pattern. Listening to your voice itself and going, what am I hearing?
[53:00] It also helps to track improvement with voice therapy. Being able to listen to recordings from right before you started therapy, and then at the end of therapy, it can be really nice to say, oh, see, I did make progress. Because sometimes that progress can be so slow.

[53:18] Dr. Linda Bluestein: Yeah, I think that's a really good idea. And are there any accommodations that people should request for work or school settings, or modifications or anything that they can do, especially if they use their voice a lot at work?

[53:31] Stacy Menton: Yes, I write those letters fairly regularly. Things like using a microphone — if you're a teacher, you should be using a microphone every day in your classroom.

[53:45] Dr. Linda Bluestein: Really?

[53:45] Stacy Menton: They make wearable microphones. They're not terribly expensive on Amazon. But also, school districts frequently will provide these if they have a letter from a medical provider. So getting the microphone is really important.
[54:05] If your job requires a ton of talking, in some cases it's worth finding a job that requires less talking, because if your voice is already fatiguing, it's going to be really hard to get it to the point where you can talk all day and work in a call center. That's going to be difficult.
[54:24] Sometimes it's a matter of writing an accommodations letter asking for the company to allow the employee to take a 5-minute break every 30 minutes. Sometimes that'll be acceptable, and other companies will be like, that really affects our bottom line too much. So I think it just depends on what the issue is, what the company is willing to do, and what they're required to do by law.

[55:02] Dr. Linda Bluestein: Yeah, because accommodations have to be reasonable, right? So if you're a one-person show, you're not expected to build a wheelchair ramp because it might be financially just not feasible. As you were talking about that, another thing I was thinking of is water breaks. Like I know even in college, students aren't always allowed to have water on them. But I think that would be something that would also be important if you're a student in school. And I would hope at the workplace you can always have water. But I wonder if that's something that would also be helpful because, at least for me, I've had a lot of problems with dryness and things like that.

[55:42] Stacy Menton: Yeah, water is also very important because hydration helps with the vocal folds in terms of mucus secretion. So the secretions aren't as thick if you're hydrated, and that will help your voice. And just in general, hydration is so important for the body as a whole. So definitely having the ability to have water — even if it's not something that's allowed generally, having that accommodation would be helpful.
[56:19] A lot of it really comes down to that vocal pacing and vocal naps kind of situation. And then being able to use certain exercises as reset buttons for your voice. That straw phonation exercise — I keep coming back to it because I like it so much — is really good at realigning the subsystems of voicing. So it's something I will encourage my patients to do. It takes about 15 seconds to get through the exercise. I'll have them do a glide up, a glide down, a set of 3 hills, and hum Happy Birthday through the straw. About 15 seconds to get through, but I'll tell them to do it 8 different times per day. So it's a little reset button each time, and then you're resetting your voice.
[57:01] And then as we progress through therapy, we also work on other strategies that can bring the voice back forward so it's not hanging out feeling like it's down in their throats. That 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 takes all the weight off and that tends to make your voice last longer. So accommodations are really helpful, and also having things in your back pocket that are good strategies to make your voice better when you need it to be.

[57:37] Dr. Linda Bluestein: And can you explain one more time about the straw and the hills you mentioned?

[57:44] Stacy Menton: Sure. I meant to have a straw here and I forgot. So you put the straw in the water — it's just about an inch of water, not a ton. Blow bubbles, and then you kind of do whoop, whoop, and then 3 hills: woo, woo, woo, and then hum a little song, keeping the bubbles going nice and steady the whole way through.

[58:09] Dr. Linda Bluestein: Okay, great. Excellent. And what are your top couple of tips for singers who are hypermobile?

[58:16] Stacy Menton: Try not to stretch your range further than you should, because we find that hypermobile patients, when we do that stroboscopy we were talking about, have a tendency to have very long stretchability, and the arytenoids tend to move open and closed a lot wider. 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.

[58:49] Dr. Linda Bluestein: I was just going to ask you that, right?

[58:51] Stacy Menton: Which is awesome. And also can be frustrating because the stability is difficult. I've had plenty of singers who did an undergrad in music for voice performance and pedagogy — 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 do all the things.
[59:23] There is an amazing group out there right now of singing teachers that are addressing this. They just started a new social media campaign called Chronically Singing. It's really impressive what they're doing right now — they're working on making it work for singers so that singers can continue singing and have the careers that they want.

[59:55] Dr. Linda Bluestein: Fabulous. We will look for a link to that and share it in the show notes as well, because I'm sure people will be very interested in that. 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?

[1:00:09] Stacy Menton: Yes. So I met the first other speech pathologist — actually he's a speech language therapist based in London. I met him through Dr. Knight at Mayo, who connected the two of us, and we started chatting about how interested we are in voice, breathing, and swallowing in this population.
[1:00:39] Then I started talking about it at conferences and found a couple of other like-minded speech pathologists here in the States. We've expanded to include 2 speech pathologists in Australia as well. Meeting is becoming a bit more difficult, but we've determined that our meetings will have to be at 7 o'clock in the morning Eastern time to accommodate all the time zones.
[1:01:09] But we're working on developing guidelines that will help other speech pathologists learn what to do. We're working on education ideas and materials and courses to teach speech pathologists how to work with the hypermobile population. And we're working on research on what the best options are for these patients when it comes to voice, breathing, swallowing, and possibly even cognition.

[1:01:40] Dr. Linda Bluestein: Well, that's so desperately needed. I'm so grateful to you for doing that important work and really appreciate your efforts, because I know that with any of these things, it's always more time-consuming than you think it's going to be, especially when you're trying to coordinate across oceans. That can be very challenging.
[1:01:58] So as you may know, we always end every episode with a hypermobility hack. Do you have a hack you can share with us?

[1:02:04] Stacy Menton: Yes. I think the one I was originally planning was the straw phonation, but I feel like I've harped on that a whole bunch. Honestly, as far as the hypermobility hack, doing things that really help you get that low centered breath — where you feel like your 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. If you do that for a couple of minutes, it's going to relax all of the muscles around the voice box. It's also going to calm everything down a little bit, and it tends to help, especially when you're feeling like things aren't working the way you want them to.

[1:02:59] Dr. Linda Bluestein: Okay. And I think you may have given us another hack in your guest information, something about sniffing to stop ILO.

[1:03:10] Stacy Menton: Oh my goodness. We didn't talk about ILO.

[1:03:14] Dr. Linda Bluestein: I have no idea what ILO is, but it looks kind of cool. I saw it written up here.

[1:03:19] Stacy Menton: ILO is 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. Laryngospasm, essentially. But happening throughout the day as opposed to just during extubation and aspiration.
[1:03:43] So in inducible laryngeal obstruction, the vocal folds slam shut because they perceive a threat to the airway, whether that threat is real or not. And a lot of times it tends to be things like exercise 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. And sniffing through the nose actually creates a brainstem response that will automatically open the vocal folds. You might have to sniff 3 to 7 times to get the attack to stop, but those attacks can be super scary. Oxygenation is usually normal — if you check O2, it's going to be in the mid-90s. But the sense that you can't get air in and you're making this sound on the inhale is super scary.
[1:04:39] If you sniff, sniff, sniff, sniff, and then exhale on "shh," there's a pressure feedback that keeps the vocal folds open on exhale. Or you could even blow out through pursed lips. You're blowing the air out of your mouth slowly, and then try to take a couple of what we call open-throat breaths after that — just a single breath in through the nose, out through pursed lips. You do about 5 of those and things will settle enough that when you go to talk next, it's not going to set off another attack.

[1:05:14] Dr. Linda Bluestein: Okay, that's huge. Being an anesthesiologist, I have of course seen laryngospasm in a different context, as you said, and it is terrifying. Closed vocal cords is a bad thing. Airway, breathing, circulation — airway and breathing right up there. And I have patients that have this happen to them spontaneously. So this is a huge, huge thing.
[1:05:38] So you're saying if you feel that — and of course that can be very confusing, because anaphylaxis can involve swelling and closure of the airway. But regardless of which one it is, the 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, you can be thinking about getting that as well. But this sniffing sounds like — you always have that available, right?

[1:06:09] Stacy Menton: Right. You always have the sniffing available to you. There are other breathing techniques too, but inducible laryngeal obstruction is usually treated by a speech pathologist. So as a voice and upper airway specialist, the 3 things I treat the most are voice, inducible laryngeal obstruction and disordered breathing, and chronic cough.

[1:06:28] Dr. Linda Bluestein: And do you see inducible laryngeal obstruction very often in this group of patients?

[1:06:38] Stacy Menton: Yes. Actually, our research that we published in February of '24 — when we published that, we found it was over 20% of our EDS clinic patients reported symptoms of this. And I am seeing more and more of them now.

[1:07:04] Dr. Linda Bluestein: Wow. That's so interesting. And last thing — can you tell people where they can learn more about you, and if there's any particular research you're involved with that you haven't already shared with us?

[1:07:19] Stacy Menton: Sure. Best place to find me is probably my professional page on Facebook: Stacy Menton Soprano SLP. And I think I still have an Instagram with that same name. I don't check that one as often, so Facebook would be the better place. And then I also have a website, stacymenton.com.
[1:07:50] As far as research that I have going — the goal right now is eventually to develop a protocol for patients who are hypermobile and who need voice, breathing, swallowing, or possibly cognitive therapy. I have a couple of planned projects related to the development of that, and that will probably be the subject of my dissertation.

[1:08:23] Dr. Linda Bluestein: 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.

[1:08:42] Stacy Menton: Thank you so much for having me and thanks for all that you do for this population.

[1:09:44] Dr. Linda Bluestein: Well, I really enjoyed that conversation with Stacy Menton, and I hope you 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.
[1:10:03] 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 at hypermobilitymd.com. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, and LinkedIn at hypermobilitymd. You can find Human Content, my producing team, at humancontentpods on TikTok and Instagram. You can find full video episodes up every week on YouTube at Bendy Bodies Podcast.
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