I totally related to that part when you were talking about your heartbeat being like a door sticking and it's pushing to get the missing beat out! I was like OMG, yes that's what I've been trying to describe for so long!! Haha. I do have POTS (not sure yet if I have EDS) and I only get those sticking beats once in a while, but it's scary when it does happen. Makes me wonder when/if my heart is going to beat again. I can't imagine having thousands per day!! I feel for you! 💕
Hugs and/or good vibes to you! This sounds super rough. (Hard to say anything that doesn't sound either like 'oh my gawd!' Or understating the awfulness.) I'm so glad you're able to still pursue your career. At the same time, I wish it was better for you. I have a ton of random moderate health issues that usually get shrugged away or misdiagnosed by medical professionals. Being less than able-bodied is really weird, especially when you don't really know why it's going on. I totally recognize that gallows humor about it.
Absolutely! I'll go into it more in the final video in this series, but for YEARS I just thought my body was "weird" and laughed it off. Gallows humour in the face of an uncontrollable, unknowable problem with a foggy future is a lot of people's way to go. At this point, I treat my body as a fascinating science experiment: every moment is new, and every time the results of the experiment change, my academic brain just goes "Wow! Interesting!" before I move on to manage the change. :P I'm too chipper and perkily positive (as you can probably tell!) a person for much else. There's no right or wrong way to go through the process of accepting one's own body the way it is, and that's become mine. I'm sorry you've been pushed away by medical professionals. Everyone deserves care, and the tendency some doctors have to dismiss concerns because they're not "severe enough" can be so damaging. I hope you're able to surround yourself with supportive, thorough doctors, if not now then very soon in the future, without things having to get worse for them to take you seriously.
@@robinhahnsopran Haha yeah I do a lot of experimenting to see what makes things worse or better. Unfortunately some pieces I've only figured out as they got worse, like food allergies. Now they have things where you can mail away for allergy panels. It's cool that some tests are getting more accessible. But I'm still like; mooore! I have a lot of feels about doctors, but thank you! I hope I figure it all out someday. For now I'm a little more aware of warning signs than I was as a kid, and I manage for the most part. I definitely default to humor when telling people about my limitations. It's usually something along the lines of 'I'm a delicate flower.'
That wrap-up section totally didn't make me cry at all. Nope. No tears. Cry-free zone over here. Who's cutting onions? Seriously though, phenomenal video, thank you for being so detailed! Also LOVE your hair like this.
I have worn a holter monitor. Twice. Always comes out normal healthy heart. I have not had an echocardiogram. I have not been diagnosed with EDS but score 9 on the hyper mobility test, according to a PT. My skin is stretchy my veins roll, I have little fatty looking bumps on my heals when I stand. Although as you mentioned, my hyper mobility is not as significant as yours. However, about my heart and daily habits. I like to stay in bed for several hours after waking. I read and study, or watch TH-cam. 😂 And my heart does feel like it’s flippy flopping around at random times. Sometimes even when I’m horizontal. 🤔 I’ve associated that with stress, or fatigue. I feel like laying down when I feel overwhelm or sadness. I do get lightheaded when I stand quickly. And when my heart is beating weird, it feels like it’s having a seizure, beating hard at not normal two beat rhythms. Sometimes it almost feels like a slow hard vibration, rapid pounding, out of sync. It lasts several minutes, and I feel super lightheaded, need to lay down or sit, and get weird pain shooting up my neck causing a temporary headache. The neck pain feels like multiple huge lump of something are moving up to my head. But doctors say I’m normal. And healthy. I’ll ask my naturopathic doctor when I see him next. 🤔 Thank you for this video explanation. Perhaps there’s an answer to my issues. I don’t remember if I experienced the flippy floppy feeling as a youth, that started in my 30’s. I do remember my vision going tunnel and dark and feeling lightheaded as a youth.
Oh uhhhh hi?! A friend sent me your video last night, after I shared a snippet of a holter ECG report with them. It sounds like we’re having the same thing going! Let me start this of with stating I’ve hEDS as well, and have been going through doctors for a while trying to figure out what’s causing me to lose consciousness. It’s likely linked to my neck instability, but my GP’s first testing was a holter ECG. The initial results of the 24 hour one showed triple PVC spikes that they misinterpreted ad ventricular tachycardia, earning me a 3 day admission for observation until they concluded there was indeed no VT going on, just PVCs. They then proceeded with a 7 day holter ECG. Last night I was looking up something else in my patient record and saw that ECG result. I knew they didn’t find anything, but I also know that my cardiologist hadn’t even heard of EDS before let alone have any information about it, which I’ve learnt is pretty typical for doctors. Anyway, they didn’t find a cardiac cause for the loss of consciousness, but during the admission I had a telemetry nurse do the quick sitting/standing/lying down test while hooked up to the machines, a poor man’s tilt table test and it was also close to POTS, but not as typical like other POTSies are having? Basically exactly what you describe. But the reason my friend remembered and linked your video, is because they listed the number of PVCs: “frequent ectopic beats, maximum at 1328 an hour”, either as duos or triple PVCs (mostly triple in my experience). So I don’t know how many a day I occasionally have, but 8k+ won’t be the exception for me. They didn’t call it a rare/unusual heart condition though. They didn’t call it anything. Just by chance reading about it in my record to find things like this. I’m supposed to get yearly ECG checkups though, this year’s should have been last month but the hospital has yet to invite me for an appointment… so much for proper monitoring…
HI, I actually play games online with a guy that knows you from the Vancouver opera world. He linked me to your channel since you've started talking about EDS since I also have that. I was put into the hEDS category even though I have a tnxb mutation since the mutation wasn't the typical ones that have been associated with clEDS in the past. I have dysautonomia, Inappropriate Sinus Tachycardia, orthostatic hypotension, and PVCs as my main co-morbidities. I actually had a hybrid MAZE procedure with a catheter ablation this past august to try and slow my heart down since the unmedicated resting rate was over 150 bmp. It has helped but I'm not 100% better. I was able to get off medication which is nice since in the states insurance won't cover a lot of heart meds and the no insurance price of corlanor was 850$ a month... so I was ordering it from Canada since the no insurance price there was only 70$. I have prescriptions for ring splints but getting them ordered and paid for is challenging. silver ring I'd have to pay up front and digisplint only seems to work with canadian health care.. so I'm still researching places for that. I also have issues with hips and shoulders and get pinched nerves from them popping out. I actually recently got AFOs and that has helped my hips some. Aside from EDS I had studied music in my undergrad but my focus was on jazz.. and I'm a contralto.. but anyways nice to see another person that has similar conditions... I used to think I was just weak and not as good as others physically and its been nice knowing why and how it isn't my fault.(Am also bi, avid tea drinker, and love my two kitties with their star trek names XD)
Yep! Not really a waltz, because of the wait time between heartbeats, but instead of the normal 1-2-rest-rest I'd feel 1-2-3-rest, followed by that heavy-door feeling. As to the recit video: it may be a while yet, because the way I want to do it will be a pretty large project of a video, but I want to get it up before the end of the year!
@@thetoycollectorofseville6428 Not to give too much away, but I'm planning a large, overarching series of episodes doing Operas Explained, each episode of which will be focussing on a single opera plot presented in a different style, from storybooks to paper dolls. One of the operas I present will be entirely sung in recit style! (Yes, it'll be either a Mozart or a Rossini opera!) As for any more details... well, stay tuned :)
I totally related to that part when you were talking about your heartbeat being like a door sticking and it's pushing to get the missing beat out! I was like OMG, yes that's what I've been trying to describe for so long!! Haha. I do have POTS (not sure yet if I have EDS) and I only get those sticking beats once in a while, but it's scary when it does happen. Makes me wonder when/if my heart is going to beat again. I can't imagine having thousands per day!! I feel for you! 💕
Thanks for sharing this!
I always find that Spoonies are much more chipper than we have any right to be. :P
Sometimes I swear I'm so sunny it alarms even me! XD
When will you do the video sung entirely in recit?
All of this, and yet your attitude is upbeat and awesome!
Respect!
Upbeat may be my middle name! xD Thank you!
Hugs and/or good vibes to you! This sounds super rough. (Hard to say anything that doesn't sound either like 'oh my gawd!' Or understating the awfulness.) I'm so glad you're able to still pursue your career. At the same time, I wish it was better for you.
I have a ton of random moderate health issues that usually get shrugged away or misdiagnosed by medical professionals. Being less than able-bodied is really weird, especially when you don't really know why it's going on. I totally recognize that gallows humor about it.
Absolutely! I'll go into it more in the final video in this series, but for YEARS I just thought my body was "weird" and laughed it off. Gallows humour in the face of an uncontrollable, unknowable problem with a foggy future is a lot of people's way to go.
At this point, I treat my body as a fascinating science experiment: every moment is new, and every time the results of the experiment change, my academic brain just goes "Wow! Interesting!" before I move on to manage the change. :P I'm too chipper and perkily positive (as you can probably tell!) a person for much else. There's no right or wrong way to go through the process of accepting one's own body the way it is, and that's become mine.
I'm sorry you've been pushed away by medical professionals. Everyone deserves care, and the tendency some doctors have to dismiss concerns because they're not "severe enough" can be so damaging. I hope you're able to surround yourself with supportive, thorough doctors, if not now then very soon in the future, without things having to get worse for them to take you seriously.
@@robinhahnsopran Haha yeah I do a lot of experimenting to see what makes things worse or better. Unfortunately some pieces I've only figured out as they got worse, like food allergies. Now they have things where you can mail away for allergy panels. It's cool that some tests are getting more accessible. But I'm still like; mooore! I have a lot of feels about doctors, but thank you! I hope I figure it all out someday. For now I'm a little more aware of warning signs than I was as a kid, and I manage for the most part. I definitely default to humor when telling people about my limitations. It's usually something along the lines of 'I'm a delicate flower.'
That wrap-up section totally didn't make me cry at all. Nope. No tears. Cry-free zone over here. Who's cutting onions?
Seriously though, phenomenal video, thank you for being so detailed! Also LOVE your hair like this.
I have worn a holter monitor. Twice. Always comes out normal healthy heart. I have not had an echocardiogram. I have not been diagnosed with EDS but score 9 on the hyper mobility test, according to a PT. My skin is stretchy my veins roll, I have little fatty looking bumps on my heals when I stand. Although as you mentioned, my hyper mobility is not as significant as yours. However, about my heart and daily habits. I like to stay in bed for several hours after waking. I read and study, or watch TH-cam. 😂 And my heart does feel like it’s flippy flopping around at random times. Sometimes even when I’m horizontal. 🤔 I’ve associated that with stress, or fatigue. I feel like laying down when I feel overwhelm or sadness. I do get lightheaded when I stand quickly. And when my heart is beating weird, it feels like it’s having a seizure, beating hard at not normal two beat rhythms. Sometimes it almost feels like a slow hard vibration, rapid pounding, out of sync. It lasts several minutes, and I feel super lightheaded, need to lay down or sit, and get weird pain shooting up my neck causing a temporary headache. The neck pain feels like multiple huge lump of something are moving up to my head. But doctors say I’m normal. And healthy. I’ll ask my naturopathic doctor when I see him next. 🤔
Thank you for this video explanation. Perhaps there’s an answer to my issues. I don’t remember if I experienced the flippy floppy feeling as a youth, that started in my 30’s. I do remember my vision going tunnel and dark and feeling lightheaded as a youth.
So let me get this straight: If you have no pulse 1/5 of the time does that make you... a ZOMBIE 1/5 of the time...? Cause that's baller!
Better yet: I can transform into that zombie right in front of your very eyes~!
I also have a very mild weird heart thing... Clues! This video was fascinating and validating!
Unrelated, but I just KNOW you're a lovely friend
Oh uhhhh hi?! A friend sent me your video last night, after I shared a snippet of a holter ECG report with them. It sounds like we’re having the same thing going! Let me start this of with stating I’ve hEDS as well, and have been going through doctors for a while trying to figure out what’s causing me to lose consciousness. It’s likely linked to my neck instability, but my GP’s first testing was a holter ECG. The initial results of the 24 hour one showed triple PVC spikes that they misinterpreted ad ventricular tachycardia, earning me a 3 day admission for observation until they concluded there was indeed no VT going on, just PVCs. They then proceeded with a 7 day holter ECG.
Last night I was looking up something else in my patient record and saw that ECG result. I knew they didn’t find anything, but I also know that my cardiologist hadn’t even heard of EDS before let alone have any information about it, which I’ve learnt is pretty typical for doctors. Anyway, they didn’t find a cardiac cause for the loss of consciousness, but during the admission I had a telemetry nurse do the quick sitting/standing/lying down test while hooked up to the machines, a poor man’s tilt table test and it was also close to POTS, but not as typical like other POTSies are having? Basically exactly what you describe. But the reason my friend remembered and linked your video, is because they listed the number of PVCs: “frequent ectopic beats, maximum at 1328 an hour”, either as duos or triple PVCs (mostly triple in my experience). So I don’t know how many a day I occasionally have, but 8k+ won’t be the exception for me.
They didn’t call it a rare/unusual heart condition though. They didn’t call it anything. Just by chance reading about it in my record to find things like this. I’m supposed to get yearly ECG checkups though, this year’s should have been last month but the hospital has yet to invite me for an appointment… so much for proper monitoring…
HI, I actually play games online with a guy that knows you from the Vancouver opera world. He linked me to your channel since you've started talking about EDS since I also have that. I was put into the hEDS category even though I have a tnxb mutation since the mutation wasn't the typical ones that have been associated with clEDS in the past. I have dysautonomia, Inappropriate Sinus Tachycardia, orthostatic hypotension, and PVCs as my main co-morbidities. I actually had a hybrid MAZE procedure with a catheter ablation this past august to try and slow my heart down since the unmedicated resting rate was over 150 bmp. It has helped but I'm not 100% better. I was able to get off medication which is nice since in the states insurance won't cover a lot of heart meds and the no insurance price of corlanor was 850$ a month... so I was ordering it from Canada since the no insurance price there was only 70$. I have prescriptions for ring splints but getting them ordered and paid for is challenging. silver ring I'd have to pay up front and digisplint only seems to work with canadian health care.. so I'm still researching places for that. I also have issues with hips and shoulders and get pinched nerves from them popping out. I actually recently got AFOs and that has helped my hips some. Aside from EDS I had studied music in my undergrad but my focus was on jazz.. and I'm a contralto.. but anyways nice to see another person that has similar conditions... I used to think I was just weak and not as good as others physically and its been nice knowing why and how it isn't my fault.(Am also bi, avid tea drinker, and love my two kitties with their star trek names XD)
Welcome! What a small world
@@robinhahnsopran haha same! So far my only super power is “party tricks” to gross out friends. Even though we’re not supposed to do them >.>
Great share. Thanks my new friend
I used to be able to physically feel my heart was skipping beats, thankfully it was a medication reaction and cleared after I stopped taking it
Did you ever have A Mitral valve prolapse?
Wow! I need an update video! And do you think that maybe a peacemaker would help your heart?
Have you ever kissed someone and told them your heart just skipped a beat? :P
DEFINITELY using that line! :D
You said it felt like it was beating in threes. You mean like like Jingle Bells?
Yep! Not really a waltz, because of the wait time between heartbeats, but instead of the normal 1-2-rest-rest I'd feel 1-2-3-rest, followed by that heavy-door feeling.
As to the recit video: it may be a while yet, because the way I want to do it will be a pretty large project of a video, but I want to get it up before the end of the year!
Exactly what will that video be sung about in Mozart/Rossini recit?
@@thetoycollectorofseville6428 Not to give too much away, but I'm planning a large, overarching series of episodes doing Operas Explained, each episode of which will be focussing on a single opera plot presented in a different style, from storybooks to paper dolls. One of the operas I present will be entirely sung in recit style! (Yes, it'll be either a Mozart or a Rossini opera!) As for any more details... well, stay tuned :)
@@robinhahnsopran That sounds cool. But it would be even cooler if you did a video sung in recit that had nothing to do with opera at all.
+