I have developed swallowing issues in the last ten years I also was recently diagnosed with hmEDS at age 65 All my issues my entire life now make sense after this diagnosis
I am a woman with a late-in-life diagnosis as well. HEDS was the answer to 90% of my life, regardless of having to fight for this diagnosis being denied by multiple doctors. One even said, "Well, it sounds like you've done your research and are confident you have this. You know that the diagnostic criteria changed in 2017?" *This appointment was in 2020.* This "specialist" _gave me a diagnosis, _*_in my medical file,_*_ without ever examining me._ *Not. One. Touch.* We are both here, together, with our later diagnosis. :) I live in a State with doctors who do not know what Ehlers-Danlos Syndrome is and have no idea how to connect to someone who does. Docs here have heard about hEDS and call it bendy body disease. You are not alone. :)
I am almost 66, I was diagnosed couple years ago. I was gaslit by medical professionals all my life. I always knew that I was different from all the people around me. @@OfficialMyxomatosis
Same here. Right now I have hyoid problems, which actually takes away my voice and makes me feel like I’m suffocating though I’m not. Yes swallowing. I get esophagus spasms, or sometimes food goes up the post nasal area. Not as funny as it sounds lol.
@@karlaskitties Oh Karla, life is most definitely strange. My sinuses have not opened that way yet, but we are very similar. Since our Hyoids are our body's only free-floating bone among all that collagen, muscle fibre, ligaments, etc., it is no wonder we have very finicky bodies. On top of this stuff, and my gets worse with stress, I also get provider appointments filled with not being believed, belittled, and labelled mentally ill because I have to persistently self-advocate (for decades even) for tests, labs, and referrals - yet - *there is not a single doctor who knows anything about EDs* in my insurance coverage area, can be driven to and charges less than the value of my house.
@@OfficialMyxomatosis I’m living on the southern Oregon Coast, but lo and behold, my doctors believe me, we have a great PT office, and they have numerous ppl knowledgable. Even though, the hyoid instability was new to them. After years of being crazy, hypochondriac, I was classified as Fibromyalgia, in 1998, at least it was some sort of a credible diagnosis. Ironically, my adult daughter was diagnosed with h-EDS in London a few years ago, so I got a second hand diagnosis. Finally. My mom had it, and nobody knew that existed, my cousin on my mom’s side as well. As the rains have started here and summer finally over, I find the cooler moister air is good for my throat. I think a lot of my problems are caused by mechanical swelling of the larynx, what with the hyoid sitting on it at times, and I also have nefarious post nasal drip, as my ENT as well as my allergy doc state. “Worst I’ve ever seen” haha. Guess it’s a partner in crime. I’ve just taken a vow of silence and have no breathing problems right now, give the throat a rest, maybe some cool compresses.
I have an issue where food gets stuck in my throat and won't go down. This is especially if im stressed or rushing. I think I have EDS, interesting to hear this is related.
hEDS.. have tons of the issues that were mentioned here. Swallowing and choking has become a much more profound ongoing problem. Lump on throat and inability to clear, inability to swallow without holding my hand over my throat. My larynx is very Hypermobile, swings side to side, it wasn’t until this year that I found out this wasn’t normal. It can be horribly painful, it can become out of place, stuck, and cause me to choke, puke, puke and choke.. panic puke choke and manually pop my throat back into place… it’s dreadful.
Have you also been tested for Arnold Chiari. AS OF 2005 , 50% patients w/ hypEDS ALSO had A.Chiari. The Chiari will cause the severe stoppage & no option but to throw up so you can breath. No water will pass. Like a bronchial spasm. This is the first grouping on this EDS forum that I have seen women over 60. Thank goodness, I was afraid I was the last one left. lol
Wow incredible watching this and relating to almost every single symptom. I have a GI appt in October, I think I'll reach out about discussing these additional concerns. I was originally referred due to what I believe is Eosinophilic esophagitis... but I've started having choking episodes lately. He's right it's very scary.
Amazing - thank you so much for this video. It's giving me answers to why I had so many throat and voice production problems as a singer which ultimately forced me to give up the profession. I can't wait to hear more about the results of the current studies! Thank you for specialising in this obscure little niche of hEDS that affects our lives so hugely.
Science bless you Prof Birchall and EDS society!❤ I started getting symptoms a few years ago with soreness and losing my voice. More recently I started having swallowing issues, interestingly first triggered by mint. There are so many symptoms that get very little explanation from doctors or not bothersome enough to seek answers. Thanks to videos like these I get possible answers and suggestions (I do make sure nothing else is going on)
Thank you for covering this concerning symptom! It can be very stressful and frightening to have mysterious symptoms like the ones described in this video!
Hi, I’m 63yr old , have many rare conditions since I was an infant. Each one had a name. All Rare. lol. Finally , Dr FRANCOMANO-Geneticist at the Harvey Inst. unveiled EDS to the world. If you need info to show your practitioners, bring in her talks & research thru EDS FOUNDATION. The only thing crueler then this disease ,is to watch your children grow up in pain & then being told that not having offspring is the Kindest & most thoughtful choice you will ever make. I know you hurt in too many ways to count, but you made an Amazing Brave choice. Stay strong, we are example for those that follow. FYI- nothing wrong with a compliment. 🤙🏽🥰
This is so informative! I have most of these symptoms/issues, but the dr's I'm seeing wouldn't know any of this info. Thanks for the awareness and information for treatments.
This was very helpful. After I watched this, the next time I had the throat lump come back i tried some exercises for relaxing the hyoid bone. I'm seeing massive improvements in throat function and areas not directly connected.
I am just being diagnosed with hEDS, and I am now seeing how it might be affecting my children. My son had so many problems with eating as a baby. He would gag so easily, and that sometimes led to vomiting up whatever food he had already eaten. I had to do things like cut a macaroni into 3 pieces for him to eat one at a time at a year old to avoid this. At 18 months old we figured out he had a high palate and severe tongue tie. The tongue tie was cut and it immediately improved everything. He could eat so much better, but 10 years later he still has what we describe as an overactive gag reflex. Just coughing up a little phlegm from a cold can cause him to vomit up an entire meal. This video might explain a lot about what is going on with him. My son also had a severe speech delay with Childhood Apraxia of Speech. I know dyspraxia (which he also had) has been associated with hEDS, but is there any research into an association with Apraxia?
When I talk too long or sing my throat hurts. My two daughters have EDS. I also have other issues but over the years i keep it under control by eating only natural, organic, None GMO food and products on my body. We are not crazy we are special and wonderfully made.
I was diagnosed with VEDS 1.5 years ago. Series of Neck CT scans and MRIs have revealed bi-lateral laryngoceles. First, I was told laryngocele disease was causing my GERD. the left side is almost 4cm and protrudes both inside and out and presents as a large neck lump. I don’t know if they are symptomatic, I have chronic sinusitis and hoarseness, difficulty swallowing food and clearing liquid. I don’t intend to have surgery any time soon. it has been offered. I just think “for science”, lol, someone should study my laryngoceles in context of “hernia” type manifestations in VEDS ?
I have hEDS and a bunch of allergies (especially to corn + man made scents) and sometimes when I am exposed to the wrong scent I get a pulsing pain in the front of my throat (near the thyroid) but my thyroid is ok. The pain pulses to my heartbeat. And if I go away from the area with the smell the pain goes away. I have no idea what this is + it only confuses the doctors.
Central nerve or vagus nerve malfunction. A lot of our food is lace with preservatives that damage our nerves. I got toxins out and I got rid of brain fog, allergies, thyroid problems, hormones and a lot more problems. If possible stay with organic and none GMO foods especially if you have genetic problems like EDS.
What are the tests called for checking my hyoid, larynx and vocal cords? Would I need a referral to go to an ent dr? Ive had my esophagus stretched 5 times, throat pain without swallowing pain, choking on food and even small pills, and my voice has always been too low even when i yell. Going to oral maxillofacial surgeon in October for TMJ. Just diagnosed 3 years ago for hEDS.
When I saw this video on Facebook I was hoping that you were going to talk about the collar bones and the sternum around the throat and how hypermobility EDS can affect the structure there resulting in a choking feeling. My daughter has been diagnosed with hypermobility EDS and I'm certain that I have it as well I have issues all over my body. Two or three months ago I felt like my right collarbone was out of place and raising too high on the front of my body. In other words I'm losing throat space. I have no idea where to turn. I was blowing up a balloon for my granddaughter yesterday and I had to look up at the ceiling to clear the space in my throat so that I could breathe enough to blow up a balloon. I'm certain that there is some structural changes going on. I had a CT scan that showed some disproportion on the right side collarbone and degenerative disc disease in my C2 and C3 vertebrae. Right now I don't have any of the problems you're describing here, except a feeling that I can't swallow food like steak and food that doesn't change shape when you eat it even well-chewed. I forced the food down before I realized what was going on. Can you advise what type of doctor I need to see. I've tried the emergency room at my local hospital and I saw an orthopedist who took x-rays and could not understand what I was trying to tell him. I've heard of problems where the ligaments with EDS don't support the head. And that's terrifying. Any advice on how to move forward would be appreciated. Thank you so much. I live in the United States and I know EDS diagnosis is behind the times here. ❤
I have classical eds, and my kyphoscoliosis is causing my kneck to collapse and push forward, resulting in what I believe is cranial instability. My throat reflex is really slow and have all these symptoms..
Whats the estimate prevalence of achalasia type disorders in EDS overall? Not sure if i missed that or not. Not a super official diagnosis but i am getting my esophagus stretched soon. I have a lot of gi issues as well (hEDS diagnosis) which included dysmotility from esophagus to colon, ruptures of congenital AVM's and history of bowel blockages, etc. My whole gi system is a mess. The AVM they told me i have are apparently called angioectasia. Weird part is im 22 with gastric angioectasia instead of intestinal. I also have the weird EDS issue that causes urinary retention and I have to self catheterize often.
This is a really useful video. I have HEDS and for the last 3 years I have had problems swallowing my saliva, it's noisy like squeezing a sponge. I choke, have phlegm in my throat all of the time and I struggle to breathe when I lay down. I also stop breathing in my sleep. My voice is always hoarse and I lose my voice completely when I have a cold. I can't get anyone to take me seriously, my Dr prescribed a ridiculous dose of omeprazole which made no difference. Ive had sleep studys done but I haven't been able to sleep long enough to get an accurate reading because the noise from my throat wakes me up and constantly swallowing to stop myself choking and I have had a lung function test. What would you suggest that I do as so far nobody seems to get it?
I have hEDS & PoTS & I have a glued up throat all the time. This causes severe choking but I can't find any medical people who understand...or who can help.
This would explain a lot! But what about the issue i seem to be having where, my throat feels squished and like it relaxes too much in various laying positions, sitting leaning my head down? Likewise, i can't lay on my back.
I have eds and often have to deal with what I believe is a hyoid bone dislocation? feels like Im being stabbed under my chin, and that my throat is popped to the left. To get it back I have to swallow super hard and push it back to the right. Extremely painful and scary though so far Im able to solve it myself. Does that sound like the hyoid? the symptoms dont match a larynx deviation from what Ive read
I randomly gasp for air for about 20 seconds. I am not eating when it happens. It is starting to last longer which is starting to make me wonder if this is how i will die.
@@mollyrosen2573 yes I feel bad for her always choking. She has so much trouble with constant headaches, eczema and celiac too. She’s been homeschooled for 4 years now because of her health
I have developed swallowing issues in the last ten years
I also was recently diagnosed with hmEDS at age 65
All my issues my entire life now make sense after this diagnosis
I am a woman with a late-in-life diagnosis as well.
HEDS was the answer to 90% of my life, regardless of having to fight for this diagnosis being denied by multiple doctors. One even said, "Well, it sounds like you've done your research and are confident you have this. You know that the diagnostic criteria changed in 2017?"
*This appointment was in 2020.*
This "specialist" _gave me a diagnosis, _*_in my medical file,_*_ without ever examining me._
*Not. One. Touch.*
We are both here, together, with our later diagnosis. :)
I live in a State with doctors who do not know what Ehlers-Danlos Syndrome is and have no idea how to connect to someone who does. Docs here have heard about hEDS and call it bendy body disease.
You are not alone.
:)
I am almost 66, I was diagnosed couple years ago. I was gaslit by medical professionals all my life. I always knew that I was different from all the people around me. @@OfficialMyxomatosis
Same here. Right now I have hyoid problems, which actually takes away my voice and makes me feel like I’m suffocating though I’m not. Yes swallowing. I get esophagus spasms, or sometimes food goes up the post nasal area. Not as funny as it sounds lol.
@@karlaskitties Oh Karla, life is most definitely strange. My sinuses have not opened that way yet, but we are very similar. Since our Hyoids are our body's only free-floating bone among all that collagen, muscle fibre, ligaments, etc., it is no wonder we have very finicky bodies.
On top of this stuff, and my gets worse with stress, I also get provider appointments filled with not being believed, belittled, and labelled mentally ill because I have to persistently self-advocate (for decades even) for tests, labs, and referrals - yet - *there is not a single doctor who knows anything about EDs* in my insurance coverage area, can be driven to and charges less than the value of my house.
@@OfficialMyxomatosis I’m living on the southern Oregon Coast, but lo and behold, my doctors believe me, we have a great PT office, and they have numerous ppl knowledgable. Even though, the hyoid instability was new to them.
After years of being crazy, hypochondriac, I was classified as Fibromyalgia, in 1998, at least it was some sort of a credible diagnosis. Ironically, my adult daughter was diagnosed with h-EDS in London a few years ago, so I got a second hand diagnosis. Finally. My mom had it, and nobody knew that existed, my cousin on my mom’s side as well.
As the rains have started here and summer finally over, I find the cooler moister air is good for my throat.
I think a lot of my problems are caused by mechanical swelling of the larynx, what with the hyoid sitting on it at times, and I also have nefarious post nasal drip, as my ENT as well as my allergy doc state. “Worst I’ve ever seen” haha. Guess it’s a partner in crime.
I’ve just taken a vow of silence and have no breathing problems right now, give the throat a rest, maybe some cool compresses.
I have an issue where food gets stuck in my throat and won't go down. This is especially if im stressed or rushing. I think I have EDS, interesting to hear this is related.
Can you breathe normally with it?
I know someone who experiences this, they have diagnosed eosinophilic esophagitus.
I have EDS and my food gets stuck and will only go down with fluid.
My whole EDS search started with a swallowing issues! Turns out I was right and I have EDS. All of my health issues finally made sense!!
What is EDS
hEDS.. have tons of the issues that were mentioned here. Swallowing and choking has become a much more profound ongoing problem. Lump on throat and inability to clear, inability to swallow without holding my hand over my throat. My larynx is very Hypermobile, swings side to side, it wasn’t until this year that I found out this wasn’t normal. It can be horribly painful, it can become out of place, stuck, and cause me to choke, puke, puke and choke.. panic puke choke and manually pop my throat back into place… it’s dreadful.
Yes! That pain is awful. Like a ripping tearing feeling. Like a dry, rough stone trying to get down.
Have you also been tested for Arnold Chiari. AS OF 2005 , 50% patients w/ hypEDS ALSO had A.Chiari. The Chiari will cause the severe stoppage & no option but to throw up so you can breath. No water will pass. Like a bronchial spasm. This is the first grouping on this EDS forum that I have seen women over 60.
Thank goodness, I was afraid I was the last one left. lol
Wow incredible watching this and relating to almost every single symptom. I have a GI appt in October, I think I'll reach out about discussing these additional concerns. I was originally referred due to what I believe is Eosinophilic esophagitis... but I've started having choking episodes lately. He's right it's very scary.
Amazing - thank you so much for this video. It's giving me answers to why I had so many throat and voice production problems as a singer which ultimately forced me to give up the profession. I can't wait to hear more about the results of the current studies! Thank you for specialising in this obscure little niche of hEDS that affects our lives so hugely.
Science bless you Prof Birchall and EDS society!❤
I started getting symptoms a few years ago with soreness and losing my voice. More recently I started having swallowing issues, interestingly first triggered by mint.
There are so many symptoms that get very little explanation from doctors or not bothersome enough to seek answers.
Thanks to videos like these I get possible answers and suggestions (I do make sure nothing else is going on)
Thank you for covering this concerning symptom! It can be very stressful and frightening to have mysterious symptoms like the ones described in this video!
I hate EDS. No children, system wide defects and constantly being told how great I look. Flares. It’s soul crushing at times.
🫂 hugs. Hang in there!
Hi, I’m 63yr old , have many rare conditions since I was an infant. Each one had a name. All Rare. lol. Finally , Dr FRANCOMANO-Geneticist at the Harvey Inst.
unveiled EDS to the world. If you need info to show your practitioners, bring in her talks & research thru EDS FOUNDATION.
The only thing crueler then this disease ,is to watch your children grow up in pain & then being told that not having offspring is the Kindest & most thoughtful
choice you will ever make. I know you hurt in too many ways to count, but you made an Amazing Brave choice. Stay strong, we are example for those that follow. FYI- nothing wrong with a compliment. 🤙🏽🥰
Thank you so much for explaining., can't explain how helpful this information is for care givers / parents !!
I cannot count the number of times I have thought
This is it
I have had three times where I thought this and it’s happening more frequently now. It’s terrifying
Have you found anything that helps?
@@meisemahleeHave you found anything that helps?
This is so informative! I have most of these symptoms/issues, but the dr's I'm seeing wouldn't know any of this info. Thanks for the awareness and information for treatments.
I am very sorry .🙏🏼🌺. You haven’t given up & that shows “everyone”, that the impossible is possible.
This was very helpful. After I watched this, the next time I had the throat lump come back i tried some exercises for relaxing the hyoid bone. I'm seeing massive improvements in throat function and areas not directly connected.
I am just being diagnosed with hEDS, and I am now seeing how it might be affecting my children. My son had so many problems with eating as a baby. He would gag so easily, and that sometimes led to vomiting up whatever food he had already eaten. I had to do things like cut a macaroni into 3 pieces for him to eat one at a time at a year old to avoid this. At 18 months old we figured out he had a high palate and severe tongue tie. The tongue tie was cut and it immediately improved everything. He could eat so much better, but 10 years later he still has what we describe as an overactive gag reflex. Just coughing up a little phlegm from a cold can cause him to vomit up an entire meal. This video might explain a lot about what is going on with him.
My son also had a severe speech delay with Childhood Apraxia of Speech. I know dyspraxia (which he also had) has been associated with hEDS, but is there any research into an association with Apraxia?
When I talk too long or sing my throat hurts. My two daughters have EDS. I also have other issues but over the years i keep it under control by eating only natural, organic, None GMO food and products on my body. We are not crazy we are special and wonderfully made.
I was diagnosed with VEDS 1.5 years ago.
Series of Neck CT scans and MRIs have revealed bi-lateral laryngoceles. First, I was told laryngocele disease was causing my GERD.
the left side is almost 4cm and protrudes both inside and out and presents as a large neck lump. I don’t know if they are symptomatic, I have chronic sinusitis and hoarseness, difficulty swallowing food and clearing liquid.
I don’t intend to have surgery any time soon. it has been offered.
I just think “for science”, lol, someone should study my laryngoceles in context of “hernia” type manifestations in VEDS
?
I have hEDS and just got diagnosed with Vocal Cord Dysfunction.
I have hEDS and a bunch of allergies (especially to corn + man made scents) and sometimes when I am exposed to the wrong scent I get a pulsing pain in the front of my throat (near the thyroid) but my thyroid is ok. The pain pulses to my heartbeat. And if I go away from the area with the smell the pain goes away. I have no idea what this is + it only confuses the doctors.
Central nerve or vagus nerve malfunction. A lot of our food is lace with preservatives that damage our nerves. I got toxins out and I got rid of brain fog, allergies, thyroid problems, hormones and a lot more problems. If possible stay with organic and none GMO foods especially if you have genetic problems like EDS.
Have you been tested for mast cell activation syndrome?
What are the tests called for checking my hyoid, larynx and vocal cords? Would I need a referral to go to an ent dr? Ive had my esophagus stretched 5 times, throat pain without swallowing pain, choking on food and even small pills, and my voice has always been too low even when i yell. Going to oral maxillofacial surgeon in October for TMJ. Just diagnosed 3 years ago for hEDS.
Please do reach out to our helpline with your questions - www.ehlers-danlos.com/eds-helpline/
When I saw this video on Facebook I was hoping that you were going to talk about the collar bones and the sternum around the throat and how hypermobility EDS can affect the structure there resulting in a choking feeling.
My daughter has been diagnosed with hypermobility EDS and I'm certain that I have it as well I have issues all over my body.
Two or three months ago I felt like my right collarbone was out of place and raising too high on the front of my body. In other words I'm losing throat space. I have no idea where to turn. I was blowing up a balloon for my granddaughter yesterday and I had to look up at the ceiling to clear the space in my throat so that I could breathe enough to blow up a balloon. I'm certain that there is some structural changes going on.
I had a CT scan that showed some disproportion on the right side collarbone and degenerative disc disease in my C2 and C3 vertebrae.
Right now I don't have any of the problems you're describing here, except a feeling that I can't swallow food like steak and food that doesn't change shape when you eat it even well-chewed. I forced the food down before I realized what was going on.
Can you advise what type of doctor I need to see. I've tried the emergency room at my local hospital and I saw an orthopedist who took x-rays and could not understand what I was trying to tell him.
I've heard of problems where the ligaments with EDS don't support the head. And that's terrifying.
Any advice on how to move forward would be appreciated. Thank you so much.
I live in the United States and I know EDS diagnosis is behind the times here.
❤
I have classical eds, and my kyphoscoliosis is causing my kneck to collapse and push forward, resulting in what I believe is cranial instability.
My throat reflex is really slow and have all these symptoms..
Whats the estimate prevalence of achalasia type disorders in EDS overall? Not sure if i missed that or not. Not a super official diagnosis but i am getting my esophagus stretched soon. I have a lot of gi issues as well (hEDS diagnosis) which included dysmotility from esophagus to colon, ruptures of congenital AVM's and history of bowel blockages, etc. My whole gi system is a mess. The AVM they told me i have are apparently called angioectasia. Weird part is im 22 with gastric angioectasia instead of intestinal.
I also have the weird EDS issue that causes urinary retention and I have to self catheterize often.
Who diagnosed you with this? I think I need my esophagus stretched as well. It’s all slumping.
@@garystaudinger9034 my GI doctor
This is a really useful video. I have HEDS and for the last 3 years I have had problems swallowing my saliva, it's noisy like squeezing a sponge. I choke, have phlegm in my throat all of the time and I struggle to breathe when I lay down. I also stop breathing in my sleep. My voice is always hoarse and I lose my voice completely when I have a cold. I can't get anyone to take me seriously, my Dr prescribed a ridiculous dose of omeprazole which made no difference. Ive had sleep studys done but I haven't been able to sleep long enough to get an accurate reading because the noise from my throat wakes me up and constantly swallowing to stop myself choking and I have had a lung function test. What would you suggest that I do as so far nobody seems to get it?
Please reach out to our helpline for resources and support! www.ehlers-danlos.com/eds-helpline/
I have hEDS & PoTS & I have a glued up throat all the time. This causes severe choking but I can't find any medical people who understand...or who can help.
This would explain a lot! But what about the issue i seem to be having where, my throat feels squished and like it relaxes too much in various laying positions, sitting leaning my head down? Likewise, i can't lay on my back.
I have eds and often have to deal with what I believe is a hyoid bone dislocation? feels like Im being stabbed under my chin, and that my throat is popped to the left. To get it back I have to swallow super hard and push it back to the right. Extremely painful and scary though so far Im able to solve it myself. Does that sound like the hyoid? the symptoms dont match a larynx deviation from what Ive read
Yes!!
I randomly gasp for air for about 20 seconds. I am not eating when it happens. It is starting to last longer which is starting to make me wonder if this is how i will die.
Interesting that there’s not a lot of data on children. My 13 year old definitely has problems with eating and swallowing with hEDS
Had??
@@mollyrosen2573 typo. She has
@@Recusant_ That’s a relief! I thought something awful had happened. Sorry they are having problems eating and swallowing though.
@@mollyrosen2573 yes I feel bad for her always choking. She has so much trouble with constant headaches, eczema and celiac too. She’s been homeschooled for 4 years now because of her health