Choking and drooling: Embarrassing EDS symptoms we don’t talk about
After a busy summer, my autonomic nervous system is completely dysregulated
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You’re going about your day when, all of a sudden, it feels like your body has completely forgotten how to swallow properly, and you start choking. It’s been happening to me a lot lately!
I might be doing housework or talking to someone, and I’ll inhale just as my throat relaxes too much. Saliva will slide down into my windpipe, and before I know it, I’m choking on it. That’s bad enough, but drooling is even more embarrassing. Recently, while I’ve been deep in thought or busy doing something, I’ll notice drool start spilling out of the corner of my mouth. Pretty cringe, even if no one’s around in that awkward moment to see me collect myself.
The ebb and tide of swallowing and drooling
I like to think I’m aware of my body and its functions, whether they’re purposeful or automatic daily processes, so this increase in dysphagia and drooling has really alarmed me. It’s a strange, humbling experience to think you’re in control of your own body and then it starts to go a little rogue on you. It’s also unsettling to lose your breath because you’re choking on your own half-swallowed saliva.
I know this can be a gross topic, and it isn’t easy for me to write about these embarrassing moments, but I think it’s necessary to bring up a fairly unspoken reality of living with Ehlers-Danlos syndrome (EDS). I like to know why my body is doing what it’s doing and what I can do to support it more, if possible. The fear of the unknown can unsettle the mind, but answers can sometimes help soothe it.
When you’re born with the connective tissue laxity that many of us EDSers have, the ligaments and tissues in the neck and jaw are prone to structural weakness. It can also affect proprioception, which is like our internal GPS, and disrupt the timing and coordination of things like swallowing, which involves a remarkable amount of precise timing and fluid motion. No pun intended.
As I reflected on why I’m having so many issues with swallowing, choking, and drooling, I realized it’s likely because I’m in the middle-to-tail end of a bad mast cell activation syndrome (MCAS) flare wherein an army of histamine and other chemicals is sent directly into my tissues, causing widespread inflammation throughout my body. This can also cause overproduction of saliva, swelling, and worsening of swallowing issues. My EDS specialist validated this.
These swallowing, choking, and drooling episodes, which have occurred in the past due to my lax connective tissues, are exacerbated right now during this flare. If you’ve read my previous columns, you’ll see how my go-go-go mentality with my family over the summer has landed me in this uncomfortable flare. Thankfully, as I said earlier, I’m at the tail end of it, but that doesn’t make these experiences any less real and scary.
This bendy body
Navigating life with what I call the trifecta of EDS, MCAS, and postural orthostatic tachycardia syndrome has been nothing short of a roller-coaster ride, and I’m not the only one on it. Several of our children were born with EDS, too. As a family, we’ve survived more choking experiences than I’d have liked, so I’ve had to learn to become confident in aiding or calming a panicking child having swallowing difficulties because it happens frequently.
Life is never dull. Now that I better understand why these issues ebb and flow, I feel more prepared to handle each episode as it comes. As for the MCAS flare, I’m now taking cromolyn, so hopefully, between that, pyridostigmine, famotidine, and the antihistamines, my swallowing, choking, and drooling will get controlled soon. For now, I am learning to be more intentional about swallowing.
From my experience of living with this bendy body, EDS affects more than just our joints. It affects some very important functions inside our body, too. I hope this helps bring awareness to another interesting part of life with EDS. More than anything, let it remind us that these symptoms are real and worth paying attention to.
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
Shelley Kapach
I have EDS hypermobile type and was recently diagnosed by barium swallow with Zenker's diverticulum, which is an outpouching in the esophagus that catches food and feels like choking, as well as causing bad breath and heartburn. Hoarseness too. Supposedly it's rare but I bet that once more women are treated and diagnosed, they will find it's not so rare-kinda like EDS!
Kristy
Did they recommend you see a speech therapist for swallowing therapy? If they have it, I would ask your primary care doctor if that's a possibility for you. There might be a variety of compensatory positions that you can use while swallowing to help food and liquid bypass that out pouching. Or they might recommendations of things like always making sure that you alternate taking a bite of food and taking a drink of something so that way you're washing the food out of that out pouching if possible. I was a speech therapist, I worked with adults with swallowing issues at the beginning of my career, but my specialty was working with kids under the age of three, especially those with oral motor issues and oral facial sensitivities. So I unfortunately have never worked with anyone with your specific issue. But 100% willing to bet that there are strategies that you could use that would just help make you more comfortable and safer in your swallow. It sounds like it must feel awful, I am so sorry that you're going through this. I hope that there's a way that someone can help you feel more comfortable. Sending love and gentle hugs.
Kathi
I too choke on my own saliva, it happens at odd moments, and is unpredictable. Very concerning, don't know if anything can be done. Just had barium swallow test and endoscopy comingup next week due to GERD symptoms and a sensation of mucus in the back of my throat. We shall see
Mindy Paolini
Don’t feel bad, unfortunately I have been there too. I was diagnosed with hEDS earlier this year after a friend was diagnosed and told me she thought I had it too. Sure enough after following up with my providers I was also diagnosed. It made so many things from early childhood on that always made me feel just a little different than other people make sense. Still learning about managing my energy levels and taking it easy when I need to due to HEDS symptoms, CRPS, Graves Disease, and Hashimotos. Thank you for being honest and sharing some of the not so glamorous things that can occur.
Diane M Smith
I hope my comment is acceptable in terms of the moderation criteria; if not, that's ok, thank you for your consideration anyway.
Oh, Lacy, I am so glad you published this column!
I have everything you mentioned, and it was such a relief just to see that I'm not the .
only one, though I'm very sorry for your deep discomfort, as well as my own.
I have hEDS, some degree of POTS, and an autoimmune condition that is probably MCAS, though the immunologist has labeled it urticarial vasculitis because he's not sure. He also thinks either lupus or Sjogren's could be present, but my ANA has not been positive so he can't be sure.
And now he's moved a long way out of town, so I can't get in to see him any more.
Lacy, thank you again for writing this column. As I read it, I kept saying "Yes! That's it!"
This was so helpful. I wish you every possible improvement in your health.
Sincerely, Diane Smith
Anne Downs
My mother used to have terrible choking at meals and throw up. Dr gave her tranquilizers—Her father had very bendy joints as do I —no one back then knew about EDS. I have recently been choking on my own saliva at meals or on food fumes. I never knew it was related to my EDS. I am dealing with MCAS. Thanks for your article
Kristy
Hi, before I became two disabled to work, I was a speech language pathologist. In addition to the things people typically think of as part of our job, we evaluate swallowing and can do therapy for it as well. If anyone here is having choking issues due to an increase in saliva, please tell your primary care doctor and ask if you can get a modified barium swallow study (or even a FEES).
The reason I recommend this is that sometimes people will silently aspirate. That means that food, liquid, saliva are going into your lungs without you coughing or knowing. And that can cause pneumonia, which obviously none of us want to have to do with because we all know what our bodies will do to us if we end up in pneumonia. So I would recommend getting one of those tests done just to confirm that you're swallowing is okay. If it's not, then you'll likely get put into swallowing therapy where you go and see speech therapist. Things we can work on are ways to help try to strengthen the throat if that's something that's necessary, but also there are lots of different compensatory positions that a person can put themselves into to reduce the chances of aspiration when swallowing. A doctor might even be able to give a medication to reduce excess saliva in the mouth.
I'm hoping this isn't happening to anybody, but I just wanted to put it out there as soon as I hear drooling and choking I instantly think of aspiration and pneumonia risk. So please just play it on the safe side and talk to your primary care doctors about it.
On a side note, drooling can be very embarrassing. I understand that and I'm sorry for anybody going through that. I tend to go the other way where I have a very very dry mouth. And that has caused a lot of problems with my teeth in addition to taking various medications as well. I feel like our bodies just are always going to do things that are going to make our lives more embarrassing than they need to be. As if our body just not cooperating isn't enough. Okay sending love and gentle hugs to anyone who is dealing with this.
Kristy
This shouldn't count as medical advice because I'm not a doctor but I'm not sure if it'll be posted but I'm going to try anyway.
If you swallowed something the wrong way, and you start coughing a lot because of it. See if you can get yourself to stop coughing long enough that you can bring your chin close to your chest, stick your tongue out a little bit and hold it between your teeth, and try swallowing in that position. It is hard to do and honestly I would also recommend just practicing, especially the tongue thing. So it's basically like you're sticking your tongue out a little and then using your teeth to hold your tongue out of your mouth. Doing that helps pull your esophagus up a little bit, so it closes off some parts of your throat that can be collecting and pulling liquids. We can also help with liquid that's collecting around your vocal folds, which is causing the choking. It is very hard to get yourself to stop choking when you're in the middle of a choking fit. So I understand that. And I try to use the strategy as much as I can for on myself, and I admit it is hard to do. But if you can get yourself into that position doing those things it can really help. Again it does pay to practice doing it. And you might feel silly doing it, but it actually does have another benefit in that swallowing with your tongue out a bit is actually a lovely exercise for your swallowing muscles. It makes them work a little bit harder when you're not swallowing anything so that you're safer because you're not swallowing anything in that moment. But it can help build up the strength of the muscles a little bit. Which those of us with Lucy goosey muscles tend to need a little bit help with that sometimes. Again this is not technically medical advice because I am not a doctor. It's just a friendly suggestion of ways to help yourself stop choking. If anyone here has suggestions on ways to help yourself stop hiccuping I would appreciate that. I know doing a spoonful of sugar can help, but when it's in the middle of the night I don't like eating a lot of sugar in the middle of the night. So if anybody else has suggestions or strategies for that I would appreciate that in return lol.
Kristy
Gonna try again because this is SO important. This is NOT medical advice as I'm not a doctor. I was a Speech-Language Pathologist for 15yrs, but sadly had to stop working due to disability due to my heds, pots/dysautonomia, MCAS, and atypical trigeminal neuralgia that affects my supraorbital nerve 😭 . So I have not been a practicing SLP since 2019. So again, I am not giving medical advice. These are just suggestions based on previous experiences.
If anyone here is having choking issues due to an increase in saliva, please tell your primary care doctor and ask if you can get a modified barium swallow study (or even a FEES).
The reason I recommend this is that sometimes people will silently aspirate. That means that food, liquid, or saliva are going into your lungs without you coughing or knowing. And that can cause pneumonia, which obviously none of us want to get, because we all know what our bodies will do to us if we end up in pneumonia.
So I suggest getting one of those tests done just to confirm that you're swallowing is OK. If it's not, then you'll likely get put into swallowing therapy where you go and see speech therapist who can work on ways to help strengthen the throat if that's something that's necessary, but also there are lots of different compensatory positions that a person can put themselves into to reduce the chances of aspiration.
I would also just in general suggest making sure that your primary care doctor is aware of the fact that you do have an excess of saliva. That knowledge is good for them to have in general just so they can keep an eye on you for that. But they're also might be different medications or treatments that they can provide you to help decrease it so that you're not having to deal with drooling or choking.
Again not Medical advice just suggestions. I just wanted to put it out there because as soon as I hear drooling and choking, I instantly think of the potential for aspiration, and the pneumonia risk. I am 100% not trying to scare anybody here. I just think that knowing how crazy our bodies are, that anytime we have something like this going on that we talk to our primary care doctors, or to whichever doctor you feel is managing your care of the most. Just Having excess saliva and coughing on it every swollen is definitely not always going to lead to pneumonia. Again I'm not trying to scare anybody here. Everybody has moments where they accidentally cough on their own saliva or on a drink. I've been having a hard time swallowing my pills lately. I usually take two big ones and four little ones to all together and then I take a big capsule and a solid dry pill together. Been doing this for years. And never had a problem in lately they've been getting stuck in my throat so I'm having to use my own strategies to try to get the pills down. So again all I'm trying to do here is just give some information and some suggestions that maybe will help people reading this. I must say again this is not medical advice I am not a doctor, and I am no longer a practicing slp. I'm just another person who is living with the trifecta and just trying to help if I can.
Please just play it on the safe side and talk to your primary care doctors about it.
On a side note, drooling can be very embarrassing. I understand that and I'm sorry for anybody going through that. I tend to go the other way, where I have a very very dry mouth. That alone has caused a lot of problems with my teeth, in addition to taking various medications as well, with one mad that is a film I have to let dissolve under my tongue and then keep it in there for about 20 minutes. That's done a doozy on my teeth as well. *sigh* I feel like our bodies just are always going to do things that are going to make our lives more embarrassing than they need to be. As if our body just not cooperating isn't enough. Ok sending love and gentle hugs to anyone who is dealing with this.
Bonnie Wright
Before I was diagnosed with hEDS, I found that when I was drinking (i.e. water!), I frequently choked, and spit it up. When I ate foods, it felt like food was stuck in my throat, and I would cough it up. it got so that I couldn't eat with friends.
My Dad had a similar issue. They found nothing on an endoscopy, but I insisted on a barium swallow test, which immediately showed a pouch in my esophagus where food or liquids would collect. The pouch is similar to the pouches in the colon, called diverticulitis. What I had was called Zenker's Diverticulum.
I had surgery at Mass General in Boston. My surgeon said it was fairly uncommon, and usually found in people in their 80's -- never as young as I was. (Mid 60's). The Surgeon taught students at Harvard University how to do this procedure. He said he does about 12 such surgeries per year, more than any other Mass General doctors except one.
The surgery closed up the pouch, and I haven't had issues since. Except for diverticulosis and diverticulitis. (Same problem, different end of the digestive system!)
Caley NH
I had 1 speech therapy session focused on Vocal Cord Dysfunction/ VCD, and the exercises they taught me have reduced choking fits to maybe a few times a year if that. It's still scary when they occur but I have a couple emergency tactics that reset my throat and breathing pretty quickly. It helped with the sporadic drooling too.
Thanks for writing this brave article.
Adrienne
Oh my. I worked out my kids had hypermobility issues years ago then in the last couple of years its become obvious they have adhd then it was clear i have these issues too. As a teen I would regularly choke when eating crackers at school and I would wonder why i kept inhaling them. In the last year I started chocking spontaneously on nothing. This makes sense. The throat will close and suddenly I am struggling to inhale so i can cough to try and resume breathing!