Sore throat, sleep apnea, failing to swallow fully so I cough, or have water swirl back out the mouth, the feeling of a sore lump on the front of neck/throat near the thyroid, hiatal hernia, sinuses with a permanent state of infection, and thin, single nostril thin discharge, etc have all been issues. Had tonsils removed as a child. Find I have fewer infection issues if I eat moderately spicy food a few times a week, especially around or before noon. My eyes water, too. I'm the only person I know that tears up from spicy food...
Thank you so much for all of this!!! I still remember the absolute relief, at the age of 18, of being able to swallow and breathe after having my tonsils, adenoids, uvula, and much of my soft palate removed. My uvula was so long that you couldn’t see the end of it, and my tonsils touched in the middle. This was of course before I had ever heard of EDS.
That was fantastic, thank you so much both! So much useful info. My nasal steroids are now in the bin and I'm going to go back to my Dr to talk about other options
I stopped my Nasonex last year and got worse, so I am sticking with a steroid nasal spray regardless of how bad it is for my collagen. I've been using them for 32 years, but I have both allergic and non-allergic rhinitis. They actually worked great for me until I developed chronic sinusitis, which overrides everything. Good luck.
Thank you for sharing that. I used to be on steroid nasal sprays but now do great without them. It is so important to consult with our own medical team and do what is best for each of us! Have you watched any other episodes?
i learned so much! I find a long hot steamy shower in the morning and again at night helps my sinuses so much when I am fighting off a cold or trying to get over an infection. Thanks so much for this interesting video!
You are most welcome and thank you for your comment! So many of us have sinus problems but do not even realize it is not normal! Have you watched any other episodes?
This is me from birth, 100%. When I had my tonsils removed, the doctor told my mom they were the worst he's ever seen. (This was about 40 years ago) I finally had sinus surgery & tubes in my ears at almost 40. I still have a ton of issues, including vocal cord dysfunction. I also have sleep apnea, but it's central, not obstructive. Nobody talks about or seems to know anything about it. Doctors wonder why I don't use a CPAP. I'd love to see some info about central sleep apnea from you. Thank you for everything!
You are most welcome and thank you for your comment. I have never heard of someone getting tubes at age 40! I will add central sleep apnea to the list of things to mention in the near future.
Yes, tonsil stones, sinusitis from age 13, and tonsillitis often on throughout life. Sleep apnea, possibly at certain times in my life particularly after three disc cervical fusion. Muscles of throat didn’t respond well for years after that. Thank you for this podcast❤
Thank you so much for the kind words!! It means so much to me. Did the sleep apnea improve when you were a bit farther out from surgery? Do you have a favorite Bendy Bodies podcast episode?
Flonase gave me a dry, crusty, bloody nose when they prescribed that for me long ago, so I couldn't use it. I had lots of ear infections as a child in the 70s, so I had a tonsillectomy that I don't even remember. I kept getting sinus infections that didn't want to heal, and I couldn't really breathe through my nose, so I got a turbinate reduction and deviated septum repair in the early 2000s. I stopped getting sinus infections all the time and had less mucus bothering my asthma. I take antihistamines daily and use a steroid inhaler for my asthma. I use a nasal cannula at night, so I do get some bloody crusts in winter. I use the saline gel Ayr to help with that. When the air gets really dry in winter, I use a warm air humidifier in the bedroom. I used to teach and had polyps on my vocal cords. I was given speech therapy and used a microphone during lectures. I don't remember them saying anything about me using the wrong parts of my vocal cords. I think they said the cords were slamming together too hard or something and irritating them. That was almost 15 years ago. I have long had itchy ears. I developed tinnitus, apparently after the first COVID vaccine. There is a range of tones that I couldn't hear in a hearing test that seemed in the range of what the ringing "sounds" like. They tested nerve conducting and that seemed fine. I am interested in trying the drops to see if it does anything. Thanks for explaining the brain's attempt to interpret the absence of a signal in the middle ear and a possible way to address it. I only learned about EDS this year and sought and obtained diagnosis (HSD).
Thank you so much for your comment. Can you share more about using oxygen via cannula at night? I use saline nasal gel also and find it very helpful. I just wish there was a way to administer it without a plastic bottle (regular saline too).
@bendybodiespodcast I did a breathing study that showed my oxygen levels dropped below 85%, cumulatively, for 70 minutes that night. So I was put on 2L oxygen at night using a nasal cannula. They said I didn't stop breathing enough times for sleep apnea. However, low oxygen can lead to heart problems just the same. I feel I sleep more deeply with the oxygen and don't hurt as much as when I travel and don't have it with me. A couple of times, I've flown to my sister's, and the medical equipment rental company let me borrow a concentrator, but they don't deliver and have limited hours. That means I either have to rent a car or my brother-in-law has to take off work for pick up/drop off. If I drive, I can drag the big beast along, but it's not worth dealing with it for short trips.
@bendybodiespodcast I use Ayr gel from a tube. If I have bag congestion or a bad smell in my sinus, I mix up saline and use a squirt bottle designed for the purpose.
He says not many EDS issues with ears, but I was told as a child that I was getting ear infections in my left ear because the inner ear was shaped weirdly, and it was trapping water when I went swimming.
@bendybodiespodcast The stones are few and far between, so I haven't really worried about them. I've had Long Covid since 2022, so have been working on a dysautonomia/PoTS diagnosis. Cannot be upright, sitting or standing, more than 10 minutes or so. My ENT also told me I am not allowed to blow my nose, as the reason I was seeing her was because I had managed to give myself a black eye from blowing it too forcefully!
@@truecrimenana thank you so much for the comment and the kind words! This episode definitely resonated with more people than I expected! I am thrilled you found it helpful!!!!
Have you experienced recurrent sore throats, tonsil stones, or sleep apnea with EDS?
Sore throat, sleep apnea, failing to swallow fully so I cough, or have water swirl back out the mouth, the feeling of a sore lump on the front of neck/throat near the thyroid, hiatal hernia, sinuses with a permanent state of infection, and thin, single nostril thin discharge, etc have all been issues.
Had tonsils removed as a child.
Find I have fewer infection issues if I eat moderately spicy food a few times a week, especially around or before noon. My eyes water, too. I'm the only person I know that tears up from spicy food...
Some of us didn't need to learn that flies could lay eggs in our sinuses 😅 add that to my list. Seriously, great interview!
Thank you for all of this information! You are making a difference in the lives of many!
Thank you so much for the comment and the extremely kind words!
Thank you so much for all of this!!! I still remember the absolute relief, at the age of 18, of being able to swallow and breathe after having my tonsils, adenoids, uvula, and much of my soft palate removed. My uvula was so long that you couldn’t see the end of it, and my tonsils touched in the middle. This was of course before I had ever heard of EDS.
Wow! I am so glad your surgery was so successful and thank you for your comment! Have you had a chance to watch any of the other episodes?
That was fantastic, thank you so much both! So much useful info. My nasal steroids are now in the bin and I'm going to go back to my Dr to talk about other options
I stopped my Nasonex last year and got worse, so I am sticking with a steroid nasal spray regardless of how bad it is for my collagen. I've been using them for 32 years, but I have both allergic and non-allergic rhinitis. They actually worked great for me until I developed chronic sinusitis, which overrides everything. Good luck.
Thank you for sharing that. I used to be on steroid nasal sprays but now do great without them. It is so important to consult with our own medical team and do what is best for each of us! Have you watched any other episodes?
I really appreciate your comment. Will you come back and let me know how things went?
i learned so much! I find a long hot steamy shower in the morning and again at night helps my sinuses so much when I am fighting off a cold or trying to get over an infection. Thanks so much for this interesting video!
You are most welcome and thank you for your comment! So many of us have sinus problems but do not even realize it is not normal! Have you watched any other episodes?
This is me from birth, 100%. When I had my tonsils removed, the doctor told my mom they were the worst he's ever seen. (This was about 40 years ago) I finally had sinus surgery & tubes in my ears at almost 40. I still have a ton of issues, including vocal cord dysfunction.
I also have sleep apnea, but it's central, not obstructive. Nobody talks about or seems to know anything about it. Doctors wonder why I don't use a CPAP. I'd love to see some info about central sleep apnea from you.
Thank you for everything!
You are most welcome and thank you for your comment. I have never heard of someone getting tubes at age 40! I will add central sleep apnea to the list of things to mention in the near future.
Yes, tonsil stones, sinusitis from age 13, and tonsillitis often on throughout life. Sleep apnea, possibly at certain times in my life particularly after three disc cervical fusion. Muscles of throat didn’t respond well for years after that. Thank you for this podcast❤
Also, my functional doctor recommended never to use steroid nasal sprays because I have a history of mold illness/fungal infection in sinuses.
And I use nasal strips almost every night, it helps my sleep 😊
Thank you so much for the kind words!! It means so much to me. Did the sleep apnea improve when you were a bit farther out from surgery? Do you have a favorite Bendy Bodies podcast episode?
@@bendybodiespodcast I find helpful information in all your episodes Dr. Bluestein. Thank you so much.
@@lisabreton9236 thank you so much!!!💜💜💜
Flonase gave me a dry, crusty, bloody nose when they prescribed that for me long ago, so I couldn't use it.
I had lots of ear infections as a child in the 70s, so I had a tonsillectomy that I don't even remember. I kept getting sinus infections that didn't want to heal, and I couldn't really breathe through my nose, so I got a turbinate reduction and deviated septum repair in the early 2000s. I stopped getting sinus infections all the time and had less mucus bothering my asthma. I take antihistamines daily and use a steroid inhaler for my asthma. I use a nasal cannula at night, so I do get some bloody crusts in winter. I use the saline gel Ayr to help with that. When the air gets really dry in winter, I use a warm air humidifier in the bedroom.
I used to teach and had polyps on my vocal cords. I was given speech therapy and used a microphone during lectures. I don't remember them saying anything about me using the wrong parts of my vocal cords. I think they said the cords were slamming together too hard or something and irritating them. That was almost 15 years ago.
I have long had itchy ears. I developed tinnitus, apparently after the first COVID vaccine. There is a range of tones that I couldn't hear in a hearing test that seemed in the range of what the ringing "sounds" like. They tested nerve conducting and that seemed fine. I am interested in trying the drops to see if it does anything. Thanks for explaining the brain's attempt to interpret the absence of a signal in the middle ear and a possible way to address it.
I only learned about EDS this year and sought and obtained diagnosis (HSD).
Thank you so much for your comment. Can you share more about using oxygen via cannula at night? I use saline nasal gel also and find it very helpful. I just wish there was a way to administer it without a plastic bottle (regular saline too).
@bendybodiespodcast I did a breathing study that showed my oxygen levels dropped below 85%, cumulatively, for 70 minutes that night. So I was put on 2L oxygen at night using a nasal cannula. They said I didn't stop breathing enough times for sleep apnea. However, low oxygen can lead to heart problems just the same. I feel I sleep more deeply with the oxygen and don't hurt as much as when I travel and don't have it with me. A couple of times, I've flown to my sister's, and the medical equipment rental company let me borrow a concentrator, but they don't deliver and have limited hours. That means I either have to rent a car or my brother-in-law has to take off work for pick up/drop off. If I drive, I can drag the big beast along, but it's not worth dealing with it for short trips.
@bendybodiespodcast I use Ayr gel from a tube. If I have bag congestion or a bad smell in my sinus, I mix up saline and use a squirt bottle designed for the purpose.
He says not many EDS issues with ears, but I was told as a child that I was getting ear infections in my left ear because the inner ear was shaped weirdly, and it was trapping water when I went swimming.
I have very small eustasian tubes so have had ear problems also. We can have plenty of other problems that are not Ehlers-Danlos Syndromes related 😱😱😱
I'm in my 50s and have occasional tonsil stones.
Also, my ENT a couple of years ago was surprised by the visibility of my adenoids!
Very interesting. Have you found anything that helps? What did you think of this episode?
@bendybodiespodcast The stones are few and far between, so I haven't really worried about them. I've had Long Covid since 2022, so have been working on a dysautonomia/PoTS diagnosis. Cannot be upright, sitting or standing, more than 10 minutes or so.
My ENT also told me I am not allowed to blow my nose, as the reason I was seeing her was because I had managed to give myself a black eye from blowing it too forcefully!
And this episode was excellent, like they all are, but was definitely of special interest to me. Haven't heard/read a lot of ENT hEDS-related info.
@@truecrimenana say WHHHHHAAT? What are you supposed to do if you cannot blow your nose? I understand after surgery but otherwise.... wtf????
@@truecrimenana thank you so much for the comment and the kind words! This episode definitely resonated with more people than I expected! I am thrilled you found it helpful!!!!
My tonsil stones went away suddenly when I quit dairy.
Thank you for sharing that!