This brings tears to my eyes because I’m so glad to see that Dysautonomia is gaining so much awareness in the medical field. I’m feeling a lot better but unfortunately, still have setbacks.
No SH*T it took me 6 years to get diagnosed. Heard it all crazy, making it up, doctors let me down to a point of giving up. A wonderful nurse brought it up to me and the neurologist doing my 3rd or 4th nerve test. I had to Dr 4 hours to Memphis to get diagnosed September 2018. I was so happy after all the tests to have a Dr believe me FINALLY and give me a name for the hell I was in. I didn't care that it's noncurable and it has no easy fix, I was so overjoyed to just be believed. Before diagnosis it almost ruined 90% of every part of my life. I started believing I was crazy!!!! Now it's 2022 I just turned 52, on my 50th birthday I promised myself NO MORE I will over come this and stand-up for myself and my health. I will and deserve to be happy and as active as I possibly can be. I have accomplished it! For me I dedicated my life to my MANY MANY pet (kids) many are rescued, have medical or physical problems. It forced me to move, get up, they NEED ME! They saved me. I went from almost complete antisocial, NEVER going shopping or leave the house to being able to go places with and without my babies and not have a panic attack or have 911 called because of my excessive sweating people think I'm having a heart attack or overdoing. Yes it happened.
Took me 7 years to get a diagnosis.I have to move 3 hours from where i lived to a whole nother city before i got diagnosed right. Everybody thought i was crazy smfh. But im still having the episodes not as much but im still in the fight.
I had a whole group of doctors miss this diagnosis. I had long covid which can cause dysautonomia. After following a world class cardiologist's treatment online I started seeing positive results in less than 2 weeks after having long covid for 2 1/2 years.
I've been diagnosed. But not a specific type. Just getting to a doctors office alone is immensely exhausting. Used work full time, exercise and walk around the whole neighborhood. Havent been able to do that in nearly 5 years
Does anybody else here also have that rocking/bobbing/swaying/walking on a suspension bridge type sensation/s (like MDDS) with this too...?? I can’t seem to keep my eyes or brain still - my eyes always go round & round in circles/squiggles. This thing is so tiring! 😭
Yes I have had it since 2009 , I would pass out , get dizzy , sweaty , blood pressure would constantly change. Feels like I am on an elevator sometimes, up and down sensation. Took years and lots of different doctors to get a diagnosis , they say it's PPPD . They treat me with clonazepam , serterline, it masks it but doesn't really stop anything, I just don't pass out anymore. I guess there's nothing that can fix it , I have tried everything, it is awful and people think you're crazy!! Good luck with your issues.
I was diagnosed this year because I started noticing my heartrate being ALL OVER THE PLACE. If you can exercise socially (for motivation), that helps a lot! I'm in a run club that does a relaxed, low-pressure 5k every week--I would totally recommend it (especially for POTS)!
I never had it until I got covid. Haven't been the same since. At 69 and very healthy I not sure how much time I've got to beat this thing. Breathing exercises has helped more than any thing I've tried.
Im a male 24 i got dysautonomia with vitamin b12 i took it 1 1/2 months than my digestive system breaked down and i lost 30 pounds in 2 months. Had anxiety and was really depressed. Now i have orthostatic hypotension, low blood pressure, low heart rate in rest and feel fatigued and always tired. Its a mild form but i cant exercise without pre syncope. Pre syncopes ruin my life. Always feel exhausted
I'm pretty sure that I'm suffering of dysautonomia . Basically I'm presenting most of the symptoms. And everytime I go to the doctor I got diagnosed with anxiety
Bro same. Just got done with a visit from my doctor and he was totally dismissive about all of my symptoms. And I have a good doctor who listens to me, still treated me like I was retarded. So even the good ones are dismissive.
@@devourerofvillages4434 I feel the same way, I actually suffer from anxiety but it has been controlled until now, it has taken me over a year to get an appointment for a tilt table test still 2 months out. Ridiculous to be dismissed because of anxiety.
@priscilla swift I saw a new cardiologist yesterday and he was also super dismissive. Told me to take my blood pressure for 2 months and come back and then he'll discuss my issues. I waited 3 months to see him and I have a years worth of blood pressure logs but he wasn't interested in them. What a joke. I will say my blood pressure pill (Losartan), fish oil (3-4 grams per day) and 81mg of aspirin per day has helped in controlling my blood pressure but my heart still races upon exertion.
I've been searching for answers since I was 5. I finally found a doctor that takes me seriously and she believes I have dysautonomia. I have to wait a long time to get tested though.
@2 weeks ago: Do you pass out or nearly pass out? Ask your doctor to have a Tilt-Table test. They’ll likely refer you to a cardiologist first. My cardiologist was able to diagnose me using this test officially.
I used to be able to WALK..4 HOURS!!!! my Best way to exercise..but NOW..i can't even walk to Bus stop that's 5minutes away from my house..its because i feel fatigue, Malaise,tired & overall weak&just NO ENERGY to do things..now i am BED RIDDEN..& among other symptoms..i think This is what's troubling my Health Problems..i never Heard of dysautonomia untill now.....or can it be Covid Symptoms..i feel like my body's been hit by a car..& now its been In so many pain..& not to mention..my back & spine also HURTS.wtf
@Chengfu Saechao: Sounds exactly like my life. It took 14 years to get diagnosed with dysautonomia. You should speak with your doctor about it-bearing in mind many doctors are unfamiliar with the condition.
I'm getting stem cells to repair the damage, don't know when but it's happening. This is just an absolute disgrace how the medical system just ignores these serious problems. The dysautonomia, autonomic nervous system, central nervous system and blood pressure and oxygen issues i bet ms, mg, Parkinsons conditions are what is part of those conditions.
It took me 7 years to get diagnosed. 1st happen in 2015 i thought i was having a heart attack,i did all the test everything was normal. The doctor at that time treated me for anxiety.Years later after moving to snother city i start having “attacks” or “spells” at work again dizzy blurred vision to light,feeling like was i going to pass out,this time in this city i had way better doctors,i had every test ran,head,heart,ear nose and thoart everything was normal but my heart doctor after seeing this diagnosis me with dysautonomia.Boom.I finnaly had s name for the madness.Its life changing. Ill be going to Cleveland Ohio soon to get treatment.If anybody needs treatment Vanderbilt in Nashville and Cleveland Ohio has a place that specializes in this…Stay pushing.
@@trishastargirl Facts…Just gotta stay extremely positive,i know its hard i have episodes daily. But ive seen people that have overcame this as well so i know its possible…🙏🏾
@@The100Edits ether late than never I guess. They thought it was just hypoglycemia before but now we know it was more than that. I’m just glad to be finally getting some answers💯
@Zeyna Nd: Electrolytes help. You do have to drink them daily. I recently began IV fluids twice a week-2 liters over four hours. Before that, I needed a walker to function around my house because of how frequently I fainted. I’ve also prescribed Midodrine for blood pressure, along with a few other things. Supplement-wise, NAC seems to really encourage blood circulation.
So, basically, even if you are diagnosed with dysautonomia, is there a treatment? It looks like there is no cure for it. So what's the point in all of this? Mayo clinic was lighted up in turquoise! This is the only cure?
Hi Victor. I am a 67 year old male. There is no "cure" but there are ways to somewhat manage and treat it to a point. Each person is very different with their symptoms and the experiences they have with Dysautonomia. I do not have POTS but many of my symptoms are the same except for the rapid heart rate increase. Like others who have been so mislead by doctors because of their ignorance about this disease, it took me 15 years to be diagnosed. I can tell you I must have had dozens and dozens of expensive tests done. Each one by a specialist who is only looking for results that pertain to their specialty. So if one or two of their results align... you get mis-diagnosed and treated wrongly. Also like others say, even though there is no cure it was such a relief to finally have a name to what is happening to your body and mind. After passing out one day and while in the hospital, I had a heart specialist suggest to me (probably the only test that I had never had)... A Tilt Test. It should have been my first!! Sure enough "Orthostatic Hypotension" a part of the umbrella group of Dysautonomia. So, now I know it was NOT all in my mind. It is real. But ( I ) knew that all along!!!! Those of us who have it know there's something not right. Even though no cure, that in and of it's self (knowing what I have) helped me. Sorry for the long reply.
@@barrywilbank8593 Thank you for your long reply. I just don't find relief in attaching a name to my disease. If there is no cure, no remedy, I don't care what obscure name the doctors call it. The helplessness and cluelessness of doctors is very frustrating.
@@vparakhin There is no "cure" but there are treatments. For example, lots of lifestyle changes such as drinking more water, increasing salt intake, frequent breaks to lie down, specific exercises etc. can help. There are also some medications which can be prescribed for people with POTS. Another key thing is that if you're a student, like me, getting diagnosed may allow you to access special provisions such as breaks in exams, permission to use the elevator and access to a bed or couch to lie down. These can be pretty big lifestyle improvements and your school/institution may require a proper diagnosis before providing you with any of these extra provisions. For myself, I have to climb 8 flights of stairs to get to class and we aren't allowed to use the elevator. I find this almost impossible and always have to take breaks every two flights of stairs, or I will collapse (I therefore have to spend a long time on the stairs, and am sometimes late to class). I am trying to get diagnosed so that I can get my school to give me access to the elevators so I don't have to climb all those stairs when my body physically can't. So, generally there's two benefits to being diagnosed: 1.) You can get advice on lifestyle changes that can greatly increase your quality of life And 2.) You have a form of proof you can use if you need special accomodations in a school or workplace
Depends on the cause and type ig. I will likely never be cured, as mine developed randomly, and if anything, is caused by something linking to my autism.
WRONG the cure is to treat the cause. And if that is not possible or you have not had that diagnosis to keep digging and in the meanwhile treat the symptoms and try to prevent de conditioning as best you can because that adds to it and snowballs.
I got diagnosed 24 years ago. It is how we are made. Learn to live around it. We are not Superman. Trying to leap tall buildings will result in a slide along the ground. I admit you will still be doing it in the Superman position. We apparently have a higher pain tolerance than the 'stiffies'. It is why diagnosis takes so long. Mention you are a stoic when you go to the doctor, it helps.
Where your "automatic" nervous system doesn't work quite right. Your body should be able to do certain things, but it doesn't - and that's a problem. It has possible causes but as of yet, no cure - only management.
Sorry to hear that…Its tough….This coming from a person that could jog 4-5 miles a day to now can barely walk 1 without feeling like im going to pass out or keep my balance… Did the prescribe you any medication like midodrine?
Diet, proper hydration (EAT the water), exercise, and sound sleep are imperative. I had POTS and many other symptoms all my life until I started working on the fundamentals.....Another part is acceptance of our idiosyncrasies and insistence that others let us make ourselves comfortable in their alien environments.
This brings tears to my eyes because I’m so glad to see that Dysautonomia is gaining so much awareness in the medical field. I’m feeling a lot better but unfortunately, still have setbacks.
Please look up Mary Ruddick on RUclips!
No SH*T it took me 6 years to get diagnosed. Heard it all crazy, making it up, doctors let me down to a point of giving up. A wonderful nurse brought it up to me and the neurologist doing my 3rd or 4th nerve test. I had to Dr 4 hours to Memphis to get diagnosed September 2018. I was so happy after all the tests to have a Dr believe me FINALLY and give me a name for the hell I was in. I didn't care that it's noncurable and it has no easy fix, I was so overjoyed to just be believed. Before diagnosis it almost ruined 90% of every part of my life. I started believing I was crazy!!!! Now it's 2022 I just turned 52, on my 50th birthday I promised myself NO MORE I will over come this and stand-up for myself and my health. I will and deserve to be happy and as active as I possibly can be. I have accomplished it! For me I dedicated my life to my MANY MANY pet (kids) many are rescued, have medical or physical problems. It forced me to move, get up, they NEED ME! They saved me. I went from almost complete antisocial, NEVER going shopping or leave the house to being able to go places with and without my babies and not have a panic attack or have 911 called because of my excessive sweating people think I'm having a heart attack or overdoing. Yes it happened.
Took me 7 years to get a diagnosis.I have to move 3 hours from where i lived to a whole nother city before i got diagnosed right.
Everybody thought i was crazy smfh.
But im still having the episodes not as much but im still in the fight.
It took me nearly 25 years to be diagnosed. It gives me hope that others won’t have to go so long!
We KNOW it’s real. It’s the “professionals” that are clueless.
Yes = the 'specialists'! Specialists my @rse! 😜
Weakness and Temperature intolerance is the worst for me. Literally can not sleep. Ever
Crying! I have this and was diagnosed in Jacksonville! Struggling to breathe at the moment. It's a very lonely isolating disorder.
Yep! It sure IS!! 👌😢 xo
I had a whole group of doctors miss this diagnosis. I had long covid which can cause dysautonomia. After following a world class cardiologist's treatment online I started seeing positive results in less than 2 weeks after having long covid for 2 1/2 years.
What is the treatment?
@@HdshalomShe probably works for that doctor...
We would all really love to know who that doctor is? 😉
So happy for you that you're making progress ❤❤❤
I've been diagnosed. But not a specific type. Just getting to a doctors office alone is immensely exhausting. Used work full time, exercise and walk around the whole neighborhood. Havent been able to do that in nearly 5 years
Does anybody else here also have that rocking/bobbing/swaying/walking on a suspension bridge type sensation/s (like MDDS) with this too...?? I can’t seem to keep my eyes or brain still - my eyes always go round & round in circles/squiggles. This thing is so tiring! 😭
Yes I have had it since 2009 , I would pass out , get dizzy , sweaty , blood pressure would constantly change. Feels like I am on an elevator sometimes, up and down sensation. Took years and lots of different doctors to get a diagnosis , they say it's PPPD . They treat me with clonazepam , serterline, it masks it but doesn't really stop anything, I just don't pass out anymore. I guess there's nothing that can fix it , I have tried everything, it is awful and people think you're crazy!! Good luck with your issues.
I was diagnosed this year because I started noticing my heartrate being ALL OVER THE PLACE. If you can exercise socially (for motivation), that helps a lot! I'm in a run club that does a relaxed, low-pressure 5k every week--I would totally recommend it (especially for POTS)!
Did you get the covid vaccine?
@@preetshahi21I did and then I got dysautonomia 😮
Please look up Mary Ruddick on RUclips!
I never had it until I got covid. Haven't been the same since. At 69 and very healthy I not sure how much time I've got to beat this thing. Breathing exercises has helped more than any thing I've tried.
Research Thiamine deficiency, popular medications for BV can cause thiamine deficiency 👀
got diagnosed around a year ago, my quality of life has taken a hit but i’m working my way back :)
Please look up Mary Ruddick on RUclips!
Im a male 24 i got dysautonomia with vitamin b12 i took it 1 1/2 months than my digestive system breaked down and i lost 30 pounds in 2 months. Had anxiety and was really depressed. Now i have orthostatic hypotension, low blood pressure, low heart rate in rest and feel fatigued and always tired. Its a mild form but i cant exercise without pre syncope. Pre syncopes ruin my life. Always feel exhausted
How are you now?
I'm pretty sure that I'm suffering of dysautonomia . Basically I'm presenting most of the symptoms. And everytime I go to the doctor I got diagnosed with anxiety
Me too. They treat me like I'm crazy
Bro same. Just got done with a visit from my doctor and he was totally dismissive about all of my symptoms. And I have a good doctor who listens to me, still treated me like I was retarded. So even the good ones are dismissive.
@@devourerofvillages4434 I feel the same way, I actually suffer from anxiety but it has been controlled until now, it has taken me over a year to get an appointment for a tilt table test still 2 months out. Ridiculous to be dismissed because of anxiety.
@priscilla swift I saw a new cardiologist yesterday and he was also super dismissive. Told me to take my blood pressure for 2 months and come back and then he'll discuss my issues. I waited 3 months to see him and I have a years worth of blood pressure logs but he wasn't interested in them. What a joke. I will say my blood pressure pill (Losartan), fish oil (3-4 grams per day) and 81mg of aspirin per day has helped in controlling my blood pressure but my heart still races upon exertion.
Me, too.
I've been searching for answers since I was 5. I finally found a doctor that takes me seriously and she believes I have dysautonomia. I have to wait a long time to get tested though.
I think I may have dysautonomia. I’ve been trying to get a diagnosis for about 1 year now but doctors diagnosed me with anxiety.
Mine just told me I am having vasovagal attacks. I'm 63, it started when I was 14. I don't think they are VVS. They're sending me to a cardiologist.
@@The100Edits are you a 94 baby? If you are that’s cool because I am as well!
@2 weeks ago: Do you pass out or nearly pass out? Ask your doctor to have a Tilt-Table test. They’ll likely refer you to a cardiologist first. My cardiologist was able to diagnose me using this test officially.
I used to be able to
WALK..4 HOURS!!!! my
Best way to exercise..but
NOW..i can't even walk to
Bus stop that's 5minutes away from my house..its
because i feel fatigue,
Malaise,tired & overall
weak&just NO ENERGY
to do things..now i am
BED RIDDEN..& among
other symptoms..i think
This is what's troubling my
Health Problems..i never
Heard of dysautonomia
untill now.....or can it be
Covid Symptoms..i feel
like my body's been hit
by a car..& now its been
In so many pain..& not
to mention..my back
& spine also HURTS.wtf
I’m being tested for it
You have fybro tms
@Chengfu Saechao: Sounds exactly like my life. It took 14 years to get diagnosed with dysautonomia. You should speak with your doctor about it-bearing in mind many doctors are unfamiliar with the condition.
I'm getting stem cells to repair the damage, don't know when but it's happening. This is just an absolute disgrace how the medical system just ignores these serious problems. The dysautonomia, autonomic nervous system, central nervous system and blood pressure and oxygen issues i bet ms, mg, Parkinsons conditions are what is part of those conditions.
I was thinking about that. Will it fix or is it supposed to fix the problem at the cellular level?
It took me 7 years to get diagnosed.
1st happen in 2015 i thought i was having a heart attack,i did all
the test everything was normal.
The doctor at that time treated me for anxiety.Years later after moving to snother city i start having “attacks” or “spells” at work again dizzy blurred vision to light,feeling like was i going to pass out,this time in this city i had way better doctors,i had every test ran,head,heart,ear nose and thoart everything was normal but my heart doctor after seeing this diagnosis me with dysautonomia.Boom.I finnaly had s name for the madness.Its life changing.
Ill be going to Cleveland Ohio soon to get treatment.If anybody needs treatment Vanderbilt in Nashville and Cleveland Ohio has a place that specializes in this…Stay pushing.
Great! I am also suffering same. Cardiologist, gastrologist failed.
If anyone who needs treatment doesn’t have money, you feel hopeless.
@@trishastargirl Facts…Just gotta stay extremely positive,i know its hard i have episodes daily.
But ive seen people that have overcame this as well so i know its possible…🙏🏾
Where at in Cleveland oh
@@robinwilliams7343 I think its called Cleveland Clinic.They specifically specialize in treatment for it:
Do you get hot sweats after eating ?
Took me 20+ years to get diagnosed
it just took me 10 😭 It’s been HORRIBLE!
@@camelback20183 I feel your pain. I’m going to the Mayo Clinic in June
@@The100Edits ether late than never I guess. They thought it was just hypoglycemia before but now we know it was more than that. I’m just glad to be finally getting some answers💯
@@camelback20183 that’s kind of scary I told my doctor u don’t what ur talking about can u take me to a neurologist this stuff not a joke
What cures it? I read electrolytes makes you feel better but then you have to keep taking it?
@Zeyna Nd: Electrolytes help. You do have to drink them daily. I recently began IV fluids twice a week-2 liters over four hours. Before that, I needed a walker to function around my house because of how frequently I fainted. I’ve also prescribed Midodrine for blood pressure, along with a few other things. Supplement-wise, NAC seems to really encourage blood circulation.
B vitamins. Potassium pills and magnesium powder.
Research Thiamine deficiency, popular medications for BV can cause thiamine deficiency 👀
Nothing cures it. Just treat the symptoms. Hate to tell you it just gets worse. Sorry
@@iamsean92 I've only gotten better ! Best wishes
Lyme disease, tick diseases, mold illnesses after long term of no help cause these nuerological problems too.
So, basically, even if you are diagnosed with dysautonomia, is there a treatment? It looks like there is no cure for it. So what's the point in all of this? Mayo clinic was lighted up in turquoise! This is the only cure?
Hi Victor. I am a 67 year old male. There is no "cure" but there are ways to somewhat manage and treat it to a point. Each person is very different with their symptoms and the experiences they have with Dysautonomia. I do not have POTS but many of my symptoms are the same except for the rapid heart rate increase. Like others who have been so mislead by doctors because of their ignorance about this disease, it took me 15 years to be diagnosed. I can tell you I must have had dozens and dozens of expensive tests done. Each one by a specialist who is only looking for results that pertain to their specialty. So if one or two of their results align... you get mis-diagnosed and treated wrongly. Also like others say, even though there is no cure it was such a relief to finally have a name to what is happening to your body and mind. After passing out one day and while in the hospital, I had a heart specialist suggest to me (probably the only test that I had never had)... A Tilt Test. It should have been my first!! Sure enough "Orthostatic Hypotension" a part of the umbrella group of Dysautonomia. So, now I know it was NOT all in my mind. It is real. But ( I ) knew that all along!!!! Those of us who have it know there's something not right. Even though no cure, that in and of it's self (knowing what I have) helped me. Sorry for the long reply.
@@barrywilbank8593 Thank you for your long reply. I just don't find relief in attaching a name to my disease. If there is no cure, no remedy, I don't care what obscure name the doctors call it. The helplessness and cluelessness of doctors is very frustrating.
@@vparakhin There is no "cure" but there are treatments. For example, lots of lifestyle changes such as drinking more water, increasing salt intake, frequent breaks to lie down, specific exercises etc. can help. There are also some medications which can be prescribed for people with POTS.
Another key thing is that if you're a student, like me, getting diagnosed may allow you to access special provisions such as breaks in exams, permission to use the elevator and access to a bed or couch to lie down. These can be pretty big lifestyle improvements and your school/institution may require a proper diagnosis before providing you with any of these extra provisions.
For myself, I have to climb 8 flights of stairs to get to class and we aren't allowed to use the elevator. I find this almost impossible and always have to take breaks every two flights of stairs, or I will collapse (I therefore have to spend a long time on the stairs, and am sometimes late to class). I am trying to get diagnosed so that I can get my school to give me access to the elevators so I don't have to climb all those stairs when my body physically can't.
So, generally there's two benefits to being diagnosed: 1.) You can get advice on lifestyle changes that can greatly increase your quality of life
And 2.) You have a form of proof you can use if you need special accomodations in a school or workplace
Depends on the cause and type ig. I will likely never be cured, as mine developed randomly, and if anything, is caused by something linking to my autism.
WRONG the cure is to treat the cause. And if that is not possible or you have not had that diagnosis to keep digging and in the meanwhile treat the symptoms and try to prevent de conditioning as best you can because that adds to it and snowballs.
How do you get diagnosed?
I got diagnosed 24 years ago. It is how we are made. Learn to live around it. We are not Superman. Trying to leap tall buildings will result in a slide along the ground. I admit you will still be doing it in the Superman position. We apparently have a higher pain tolerance than the 'stiffies'. It is why diagnosis takes so long. Mention you are a stoic when you go to the doctor, it helps.
You are wrong, very wrong.
@@Bellissima2 explain your comment please
@@debbiesimmons3081don't say stoic. They'll just think you're weird.
Omg this is amazing!!!!!
Thanks China
I got it from covid long haulers and it controls my life
It literally controls every aspect of your life. It’s torturous 😞.
@@LM-is2ryDid you improve?
I’m being tested for it
Where your "automatic" nervous system doesn't work quite right. Your body should be able to do certain things, but it doesn't - and that's a problem. It has possible causes but as of yet, no cure - only management.
I was just diagnosed with it last week!!!
Sorry to hear that…Its tough….This coming from a person that could jog 4-5 miles a day to now can barely walk 1 without feeling like im going to pass out or keep my balance…
Did the prescribe you any medication like midodrine?
It took me just over 14 years to get diagnosed with dysautonomia.
I had fainted twice already and Everytime I feel dizzy I get scared of fainting. I well ask my doctor about this. My counselor told me I may have it
I'm on iv hydration 3 days a week at home. It's horrible to deal with 😢
This is what they are saying I have 😢
this has been me. talk to me if you want!
I have it.
Take vitamin B1.
Omg 😮😢please someone help me
Diet, proper hydration (EAT the water), exercise, and sound sleep are imperative. I had POTS and many other symptoms all my life until I started working on the fundamentals.....Another part is acceptance of our idiosyncrasies and insistence that others let us make ourselves comfortable in their alien environments.
C1 vertebrae is pinching your nerves. Look into c1 adjustment
Did it help you ?
If only it were that simple 😂
Food additives in the 70s and 80s