🤦♀️ you have explained me to the T. I have felt like a broken human and stopped receiving any care due to the high stresses of explaining these symptoms and going from doctor to doctor. I'll use this to talk to someone. Thank you for sharing.
Interesting! Thanks for the wisdom about using a chair as an aide & not to jump to conclusions or a rush to judgement. I worked with the disabled for decades & sometimes people need a gentle reminder. Blessings! Jackie in upstate NY
I recently saw one of a woman with a walking stick and looking at her phone. It was shared as if she was caught pretending to be blind. Phones have so many options, including voice options and extra large fonts with different contrast options. Blindness has such a scale but people often think of disabled as not able to do something in any way shape or form. I thought that years ago too.
Hey, girl! So happy to have found your channel. Here to support! I have my own story with dysautonomia and POTS and it's so good to find others who understand. Subscribing now!
Hello. I have just found your channel and I was looking at going gray for women with short wavy hair and boom there you were. But now I have found this video and it's crazy because I have been diagnosed with tachycardia as a result of having covid-19. So I feel like we are Soul Sisters here girlfriend. I am now going to watch every video that you made and I'm just blessed to have found someone who has so many similarities as myself.
To be honest with you I never needed to go to the PCP in the last three years until C-19 happened. My blood pressure is a bit up, I get dizzy when changing positions. My eyesight is delicate now a bit blurry. I get cold easier, in my extremities. Can’t get hot showers anymore, I fainted in it. My eyes move on their own. I get tired easily now than precovid. Mine is mild. I am happy to have found you.
I have dysautonomia, and have known for a few years now (since around 8th grade?) However ended up completely refusing to acknowledge it as I felt it was simply "impossible" for me to have it (Internalized Ableism I suppose?). So now i'm trying to do all I can to learn more on how to 'care' for myself, Thank you! I feel like this information was very helpful and reassured me of things. Please keep up the Good work!
I have a very rare disorder called hypogammaglobulinanemia. So rare, that there is not a 'month' for it, and most MD's have not even heard of it. I usually have to explain it to docs, unless it's a specialist. So, I understand how hard it is to have an 'ailment'. It's been hard. I appreciate your presentation. Thanks for sharing.
Im 14 and anorexic, and this friday i just got diagnosed with Dysautonomia, and inappropriate sinus tachycardia, and all i wanted to say was thank you. When the doctor had just told me about this i felt like my life had just been ruined but after doing research, i found you, and you have given me so much hope. i connected with you through so many of your experiences and symptoms you listed out and i figured out there are ways to outgrow this, and even though Dysautonomia will always be apart of my life i can learn to live with it. so thank you so so so much
I think this reply is showing from my second channel, but it’s me 💕 You have a lot going on right now and I’m sure it overwhelming at times. You’ll learn what works for you over time, both in medications and just how to better go about doing things. Try not to let rough days define your future and not let good days always go towards catching up. Finding balance is the goal. I’m thinking about you this afternoon and sending lots of good vibes.
You are absolutely fabulous. How often do you do your grocery shopping? Do you ever stock up on water? Can you possibly do some in store grocery shopping videos? It would be awesome if you could show how you do your shopping
I'm almost sure this is what I've been dealing with my whole life! I've been misdiagnosed many times because as far as I know, in my country not many people know about this condition and therefore it's not diagnosed properly. I think I'll have to learn a lot on my own to get myself the help I need :( Thanks for this video, this really helped a lot!!!
I don’t know where you live, but in Toledo, Ohio, there’s a top center for dysautonomia. There’s one in the UK and France. Most recently, there’s one in Bolivia started by the daughter of the doctor who started one in Spain. I know, it’s very random. You desperately need to find a doctor who truly understands this disorder.
I have severe dysautonomia with total body CRPS I enjoyed this video but I am looking for the video where you say you will share home remedies for dysautonomia and I cannot find it!!!
Do extreme emotions or trauma cause an attack that might cause syncope? When I got the call that my dad had a serious accident it was so strange. I felt the worst horror of my life, then my vision went completely white, a felt weak, and folded down starting to pass out. My husband held me up.
Absolutely! Dysautonomia is an unpredictable autonomic nervous system, so your flight, fight or freeze. Panic attacks, to my understanding, are also an elevated fight, flight, or freeze. Processing all of that at once can cause syncope.
Wow I didn't know dysautonomia causes purple hands and feet. I thought I just had a terrible blood circulation. Because sometimes when I'm crocheting or really just doing anything. My hands and geet go purple and even my nails go completely purple.
I also have chronic and progressive dysautonomia with EDS. I was diagnosed at 13. I’m now 53 and I’m going to die within the next 5 years. I developed restrictive lung disease from chronic bilateral atelectasis. Doctors are the most insidious part of the disease/disorder/syndrome or whatever they’re calling it this week. At least 50% say your psycho. Another 25% agree with the diagnosis, but they treat it as being dehydrated. 20% have knowledge of how it works, or in our case doesn’t work lol, then we finally find someone in that rare 5% who legit knows all about, BUT they need to send you to the closest treatment clinic 6 hours away. 🙃🙄🤷🏻♀️ Just for fun, you find out You’re ineligible for the drug trial because now you’re dying. Can’t let us pesky sick people ruin those good data numbers! 🎉 My apologies, but my husband has found me in convulsions, unconscious on the floor too many times. And, this glorious man who loves me regardless of this nonsensical illness gets accused of beating me because I’m constantly bruised up head to toe. I do all the things. I wear the compression garments. I take an entire drawer full of medication throughout the day. I have had 2 surgeries already this year. I’m married to a true stoic who looks like Pierce Brosnan and has occasionally, “shushed” me gently so he could bark at the doctors. It’s criminal how the medical professional, minus that angelic 5%, treat people with this illness. For you, or anyone else who doesn’t know, dysautonomia is actually a secondary disorder. That means they’re also ignore whatever Prime autoimmune disorder triggered your dysautonomia. After 40 years of being called hysterical, my symptoms being ignored to the point my husband literally drove me to another city and hospital system an hour away where I was rushed in for emergency surgery. Last month, I randomly happened to see my actual diagnosis on the computer, Ehlers-Danlos Syndrome with suspected polymyositis. 40 years of being called unstable and irrational finally gets a name, but… there’s no cure.
I was just diagnosed with autonomic neuropathy. The neurologist is in no hurry. My problem right now when I eat, by BP goes up. My upper body stays cold, my thighs stay hot. After listening to Carrie, I wonder if I even have it. I am so confused.
Trying to get a diagnosis- not easy where I live. The healthcare in RI is wretched. The doctors are dismissive and the last year has been hell. Do you have any advise for waking up in the middle of the night, springing to your feet to breathe and so dizzy you’re about to pass out until I finally find a neuro… please..
I was diagnosed with dysautonomia my cardiologist thinks is pots. I’m waiting to see a specialist. Question y when I eat sweets or carbs I feel so drunk? Does anybody know
You mention that you will post a video regarding homeopathic products you have found helpful for Dysautonomia, I have been unable to find that video. Any suggestions.
So could these same symptoms go for NCS? Is dysautonomia an umbrella term? I just got diagnosed with that and this would explain my symptoms you just mentioned.
@@CarrieJessica ok, I see! Thank you 🙏. Do you also know how often you have had VT, and also what have your doctors said about it? Is it dangerous? Have they tried to ablate it? Or fix it in another way. Can you live with VT?
How did you treat your vision issues? That’s what’s bothering me the most. I’m going to see the doctor soon. I think I have this going on when you broke it down it makes sense! I thought it was adie syndrome, but I think it’s combination of things, my symptoms all started after covid vaccine
Hi Carrie my daughter is suffering from this debilitating illness, she has suffered through home schooling from 10th grade and her freshman college year she seemed to turn the corner only to have it resurface this July stopping her from attending in person classes at Pratt in New York along with her twin sister who doesn’t have the disorder. She has a RUclips channel called “LifeisBAI”. It would mean a lot if you could offer her some emotional support , these are very tough times trying to keep her motivated and engaged she is also wheel chair bound until we can find a therapy that works for her extreme symptoms. Thanks
@@CarrieJessica totally feel ya. I get all sorts of extras as well. I hope you have better luck than me getting treated. Make sure you drink twice as much water as a normal person and try to intake insane amounts of salt and electrolytes. Compression socks don't do much for me other than give me an extra few seconds to sit before I hit the ground. This is all we can do really. It sucks, But if you keep up on it it's worth it
🤦♀️ you have explained me to the T.
I have felt like a broken human and stopped receiving any care due to the high stresses of explaining these symptoms and going from doctor to doctor.
I'll use this to talk to someone.
Thank you for sharing.
I hope this helped in some small way, chronic illness can be so overwhelming and getting help seems like a part time job. Keep me posted.
Was recently diagnosed with dysautonomia. Looking forward to learning more! Thank you for sharing!
You are so welcome! Feel free to find me on my social media stuff if you're looking for support!
2 years later, me too. Haven't pinpointed any specific variety yet so I'm researching everything.
Interesting! Thanks for the wisdom about using a chair as an aide & not to jump to conclusions or a rush to judgement. I worked with the disabled for decades & sometimes people need a gentle reminder. Blessings! Jackie in upstate NY
I recently saw one of a woman with a walking stick and looking at her phone. It was shared as if she was caught pretending to be blind. Phones have so many options, including voice options and extra large fonts with different contrast options. Blindness has such a scale but people often think of disabled as not able to do something in any way shape or form. I thought that years ago too.
Hey, girl! So happy to have found your channel. Here to support! I have my own story with dysautonomia and POTS and it's so good to find others who understand. Subscribing now!
I have been in a flare for a month now, so frustrating!
Hi Carrie, I also have POTs , it's not a fun thing to have but we are Blessed to be here 💜💜💜
Hi Margo. Ugh, this Dysautonomia life can be rough!
Hello. I have just found your channel and I was looking at going gray for women with short wavy hair and boom there you were. But now I have found this video and it's crazy because I have been diagnosed with tachycardia as a result of having covid-19. So I feel like we are Soul Sisters here girlfriend. I am now going to watch every video that you made and I'm just blessed to have found someone who has so many similarities as myself.
To be honest with you I never needed to go to the PCP in the last three years until C-19 happened. My blood pressure is a bit up, I get dizzy when changing positions. My eyesight is delicate now a bit blurry. I get cold easier, in my extremities. Can’t get hot showers anymore, I fainted in it. My eyes move on their own. I get tired easily now than precovid. Mine is mild. I am happy to have found you.
Same after covid
Same after getting sick. Not alone.
@@mjenks85 8 months later im still not normal
I have dysautonomia, and have known for a few years now (since around 8th grade?) However ended up completely refusing to acknowledge it as I felt it was simply "impossible" for me to have it (Internalized Ableism I suppose?). So now i'm trying to do all I can to learn more on how to 'care' for myself, Thank you! I feel like this information was very helpful and reassured me of things. Please keep up the Good work!
I have a very rare disorder called hypogammaglobulinanemia. So rare, that there is not a 'month' for it, and most MD's have not even heard of it. I usually have to explain it to docs, unless it's a specialist. So, I understand how hard it is to have an 'ailment'. It's been hard. I appreciate your presentation. Thanks for sharing.
Anna, thanks for giving me something to google and get familiar with.
Im 14 and anorexic, and this friday i just got diagnosed with Dysautonomia, and inappropriate sinus tachycardia, and all i wanted to say was thank you. When the doctor had just told me about this i felt like my life had just been ruined but after doing research, i found you, and you have given me so much hope. i connected with you through so many of your experiences and symptoms you listed out and i figured out there are ways to outgrow this, and even though Dysautonomia will always be apart of my life i can learn to live with it.
so thank you so so so much
I think this reply is showing from my second channel, but it’s me 💕 You have a lot going on right now and I’m sure it overwhelming at times. You’ll learn what works for you over time, both in medications and just how to better go about doing things. Try not to let rough days define your future and not let good days always go towards catching up. Finding balance is the goal. I’m thinking about you this afternoon and sending lots of good vibes.
Do you have familial dysautonomia?
You are absolutely fabulous. How often do you do your grocery shopping? Do you ever stock up on water? Can you possibly do some in store grocery shopping videos? It would be awesome if you could show how you do your shopping
I’m actually finding out foods I’m sensitive to as well as being more digestive easy for my gastroparesis. I’d be happy to share how that goes.
Thank you. I have post covid dysautonomia. It is good to know that it is not simple crazy,.
Are you doing better now
I'm almost sure this is what I've been dealing with my whole life! I've been misdiagnosed many times because as far as I know, in my country not many people know about this condition and therefore it's not diagnosed properly. I think I'll have to learn a lot on my own to get myself the help I need :(
Thanks for this video, this really helped a lot!!!
I don’t know where you live, but in Toledo, Ohio, there’s a top center for dysautonomia. There’s one in the UK and France. Most recently, there’s one in Bolivia started by the daughter of the doctor who started one in Spain. I know, it’s very random. You desperately need to find a doctor who truly understands this disorder.
@@MichiaMakes Thanks for the information, but I live in El Salvador 😭 and I don't think I could travel😭
This was insanely helpful, I would love to chat and ask you so many questions
Oh God Bless you !!!! I am there with you and the vision issues. Have they resolved for you ??
I have severe dysautonomia with total body CRPS I enjoyed this video but I am looking for the video where you say you will share home remedies for dysautonomia and I cannot find it!!!
i first heard about spoons from ME/CFS channels. i guess ME/CFS and dysautonomia are related.
5:17 "mild curve or sway" sounds like Irlen Syndrome
I was diagnosed 4 years ago and still some people think it’s all in my mind 🙃
Same :( like ah yes, the blood pooling in my arms and legs is all in my mind..
Do extreme emotions or trauma cause an attack that might cause syncope? When I got the call that my dad had a serious accident it was so strange. I felt the worst horror of my life, then my vision went completely white, a felt weak, and folded down starting to pass out. My husband held me up.
Absolutely! Dysautonomia is an unpredictable autonomic nervous system, so your flight, fight or freeze. Panic attacks, to my understanding, are also an elevated fight, flight, or freeze. Processing all of that at once can cause syncope.
I was just diagnosed with this last week along with it yet to be identified neurological issue. Sidenote you look like my sister
Wow I didn't know dysautonomia causes purple hands and feet. I thought I just had a terrible blood circulation. Because sometimes when I'm crocheting or really just doing anything. My hands and geet go purple and even my nails go completely purple.
Omg i did know know either I have all these issues after covid.
I also have chronic and progressive dysautonomia with EDS. I was diagnosed at 13. I’m now 53 and I’m going to die within the next 5 years. I developed restrictive lung disease from chronic bilateral atelectasis. Doctors are the most insidious part of the disease/disorder/syndrome or whatever they’re calling it this week. At least 50% say your psycho. Another 25% agree with the diagnosis, but they treat it as being dehydrated. 20% have knowledge of how it works, or in our case doesn’t work lol, then we finally find someone in that rare 5% who legit knows all about, BUT they need to send you to the closest treatment clinic 6 hours away. 🙃🙄🤷🏻♀️ Just for fun, you find out You’re ineligible for the drug trial because now you’re dying. Can’t let us pesky sick people ruin those good data numbers! 🎉
My apologies, but my husband has found me in convulsions, unconscious on the floor too many times. And, this glorious man who loves me regardless of this nonsensical illness gets accused of beating me because I’m constantly bruised up head to toe. I do all the things. I wear the compression garments. I take an entire drawer full of medication throughout the day. I have had 2 surgeries already this year. I’m married to a true stoic who looks like Pierce Brosnan and has occasionally, “shushed” me gently so he could bark at the doctors.
It’s criminal how the medical professional, minus that angelic 5%, treat people with this illness. For you, or anyone else who doesn’t know, dysautonomia is actually a secondary disorder. That means they’re also ignore whatever Prime autoimmune disorder triggered your dysautonomia. After 40 years of being called hysterical, my symptoms being ignored to the point my husband literally drove me to another city and hospital system an hour away where I was rushed in for emergency surgery. Last month, I randomly happened to see my actual diagnosis on the computer, Ehlers-Danlos Syndrome with suspected polymyositis. 40 years of being called unstable and irrational finally gets a name, but… there’s no cure.
I was just diagnosed with autonomic neuropathy. The neurologist is in no hurry. My problem right now when I eat, by BP goes up. My upper body stays cold, my thighs stay hot. After listening to Carrie, I wonder if I even have it. I am so confused.
Trying to get a diagnosis- not easy where I live. The healthcare in RI is wretched. The doctors are dismissive and the last year has been hell.
Do you have any advise for waking up in the middle of the night, springing to your feet to breathe and so dizzy you’re about to pass out until I finally find a neuro… please..
After covid my resting heart rate is around 60-70... my heart doesnt go as high as before when exercising . I feel like crap
Do you have issues with stop of breathing, especially when falling asleep?
Yes, i have some times i cannot fall asleep, because i stop breathing automatically and have to do it manually
I was diagnosed with dysautonomia my cardiologist thinks is pots. I’m waiting to see a specialist. Question y when I eat sweets or carbs I feel so drunk? Does anybody know
What is the treatment for this?
It widely depends person to person. You’re treating the symptoms and those can fluctuate so much.
You mention that you will post a video regarding homeopathic products you have found helpful for Dysautonomia, I have been unable to find that video. Any suggestions.
Mine comes along with small fiber neuropathy very painful
So could these same symptoms go for NCS? Is dysautonomia an umbrella term? I just got diagnosed with that and this would explain my symptoms you just mentioned.
Yes, dysautonomia is an umbrella term for autonomic dysfunction conditions. I have NCS as well as other types of dysautonomia.
Can you have VT ventricular tachycardia when you have Dysautonomia?
I have been diagnosed with both VT and Dysautonomia. While I’m not a medical professional at all I can say that my medical records have them both.
@@CarrieJessica ok, I see! Thank you 🙏. Do you also know how often you have had VT, and also what have your doctors said about it? Is it dangerous? Have they tried to ablate it? Or fix it in another way. Can you live with VT?
How did you treat your vision issues? That’s what’s bothering me the most. I’m going to see the doctor soon. I think I have this going on when you broke it down it makes sense! I thought it was adie syndrome, but I think it’s combination of things, my symptoms all started after covid vaccine
I do MFBF therapy for my vision.
I doubt they all started afterwards. If you keep researching and think back I’m confident you can connect more dots.
How is ur pots?
Hi Carrie my daughter is suffering from this debilitating illness, she has suffered through home schooling from 10th grade and her freshman college year she seemed to turn the corner only to have it resurface this July stopping her from attending in person classes at Pratt in New York along with her twin sister who doesn’t have the disorder. She has a RUclips channel called “LifeisBAI”. It would mean a lot if you could offer her some emotional support , these are very tough times trying to keep her motivated and engaged she is also wheel chair bound until we can find a therapy that works for her extreme symptoms. Thanks
Sometimes I pass out 3 times a week, sometimes I can make it a year. My teeth hate me.
Relatable! I haven't been passing out lately but now I have a new group os symptoms. its exhausting
@@CarrieJessica totally feel ya. I get all sorts of extras as well. I hope you have better luck than me getting treated.
Make sure you drink twice as much water as a normal person and try to intake insane amounts of salt and electrolytes. Compression socks don't do much for me other than give me an extra few seconds to sit before I hit the ground. This is all we can do really. It sucks, But if you keep up on it it's worth it
Antidepressants caused my dysautonomia
How did you find that out? Been on the a long time and just diagnosed? Ty