Thanks. Nicely covered such a complex thingy. Myself autistic so I am researching causes of symptoms not stated here , thinking prolonged anxiety started whatever I developed. The advice is never to run from bears..lol thx
My blood sugar levels crashes into the 50s when I do certain movements or I bend over to pick anything off of the floor and when I lay on my left side.
Interesting Rachel (was that your name? I can't see it now but nice name. That's why I named my daughter that!) I used to get crazy palpitations in the 80's early 90's going to sleep I think on my R side and so I just had to go to sleep on my left side so too bad it was otherwise easier for me to go to sleep on my R side. I've been through hell and back with this diagnosis which naturally I just had to give myself btw. In fact I have a whole pile of mostly totally interrelated diagnoses and there are about zero that I haven't had at least a big part in getting to the bottoms of or just flat-out telling my doctors what it is I have. Obviously I've been right every time and I really don't have any trouble having them believe me anymore. Of course I do have a 30 year medical background myself so have a good understanding of what's going on but it's a good thing I know more than many of my doctors do about almost all of my issues (excepting my immunological and rheumatalogic issues) as you can seriously go to a board certified neurologist to say you want some help dealing with your dysautonomia and he might just say, "Oh we know nothing about dysautonomia! And even if we did there's nothing we can do about it anyway!" Happened to me and then you have to think Well then why did you not feel guilty about me driving 20 miles to get here and wasting my entire day??? Because you know you're going to be exhausted from just having had to even go there! That is just plain nasty!!
@@joeynarciso94 Interesting... I too get palpitations at night if I sleep on my right...which I realise is my ' default' position cos I always wake up with severe palpitations and I find myself sleeping on the right!. I try to sleep on the left but I always end up on the right! I have Pots and I personally suspect also 'brain pressure' ( IIH). Do you have Pots? How did you sort the palpitations sleeping on the right issue?
I have Dermatomyositis and have Dysautonomia. Extremely bad. I have interstitial lung disease. I can tell you very very few people understand what the autonomic nervous system even does. Even when I try and explain it. I can not be out in the heat. Even 70 degrees. We have to keep my room at 50 degrees. I call it hibernation during the summer because I have to stay in my very cold room. My husband freezes but just puts on more clothing. I get palpitations constantly. Have had rapid heartbeat a lot which cardiology says I am getting an extra heartbeat in my lower chambers and an extra heartbeat in my upper chambers of my heart. They say it is the Dysautonomia. I captured the extra heartbeats like 20 minutes after putting the heart monitor on. I have to wear oxygen because of lung disease. I never smoked. Dysautonomia affects most every system in my body. From my eyes to digestion and so much more. It is absolutely terrible to deal with!
My heart goes out to you...I pray to God you get healed....❤ I too have this dreaded dysutonomia..Pots and I suspect ' brain pressure' ( IIH) as a complication of it or due to it. I hope I'm wrong and it turns out to be more of the dysatonomia symptoms. From being very fit & healthy to practically disabled. But I really hope we recover... God bless ..
I’m struggling to find a doctor who deals with this in the Kansas City area. Any suggestions? I was diagnosed with this by two doctors and have numerous symptoms of dysautonomia.
My daughter has been diagnosed with orthostatic intolerance (via tilt-table test), but nothing she's been told to do helps in any way. I have my doubts about the diagnosis because what happens to her is that she is completely fine and normal for 2-4 weeks at a time, then she will suddenly be non-functional; severe brain fog, dizziness, slow speech, irritability, and all she can do is lay around for a week or so. She does not feel "better" when she's laying down. Then, after a week or so, she'll get "better" and be able to function normally again. When we compare these symptoms to others, it doesn't seem like it matches other people's experiences with orthostatic intolerance and POTS. Any advice?
My menstrual cycle effect my dysautonomia symptoms pretty intensely. I’m not sure how old your daughter is but that is definitely something to consider if you notice she has times when her symptoms are worse. Hydration and electrolytes are super important, especially during those times when I am having a bad flare up. I’m sorry your daughter is dealing with this and I hope she finds ways to cope, it’s a very frustrating condition to have 🖤
Try avoiding wireless radiation. Turn off Wi-Fi when not in use, especially at night. Keep cell phone on airplane mode with Wi-Fi and Bluetooth settings switched off. Limit time on wireless devices. Look for other wireless sources in her environment and shield them. Example: utility meters (called smart meters). Educate yourself on the dangers of wireless radiation. Don't believe any sources that tell you it is safe. Industry funding has corrupted and censored this information.
@@Chet_Thornbushel Thank you. Her menstrual cycle definitely affects her, but doesn't predict when she'll be totally wiped out. I know the fluids and electrolytes help. Thank you!
@@kristenwilkinson9199 It looks like my comment got deleted. Here are the websites I sent in my reply: physicians for safe technology; Environmental Health Trust; Magda Havas There are so many more. This should help you get started. I hope this helps!
I had a milder dysautonomia, but after COVID, I'm home bound and completely disabled. Everything hit at once too. Périmenopause, metoo, where I faced my rapist on tv, which unlocked dissociation amnesia I didn't know I had , which brought a severe c-ptsd diagnosis. So yeah, I have been bed bound since 2020. From a pretty active woman who ran a charity with a food bank etc to having the life of a vampire house cat.
Me too!!! I have dysautonomia and Long C. Currently not doing to bad though. Have a few nagging symptoms but lots of water and electrolytes and 3 different meds have helped me for sure.
I have DYSAUTONOMIA..took years to diagnose 🥺😢💔...I suffer with nOH..wish you would have talked about that. Nobody does. Because of DYSAUTONOMIA I also have anxiety disorder..ibs..migraine my entire life..3PD..insomnia. MCAS...dizzy all the time..I mean all the time..I am homebound without a treatment plan because all medications such as midodrine caused too many side effects..as well as meds for ibs and MCAS..I watch video after video..yours at least explain a bit better..I do not renal any doctor tell me causes of DYSAUTONOMIA..I was diagnosed by the only autonomic disorder doctor in the state of Georgia where I happen to live now..woish I didn't 🥺..if you can help me at all I would welcome anything you might say. I am sick of hearing about POTS AND I know it's the most common..my niece has it plus EDS..but there are those like me who can't be helped and I don't accept that..but seems I have no choice..I dont move around much because of the dizziness and lack of motivation due to lack of energy because I don't exercise at all 😢I used to be a runner..now I hardly make it from point a to b...I have driven in 3-1/2 years and haven't been able to read a book on 2 years..I'm a Bob without purpose. My family doesn't better I'm sick or care 💔💔..my bushman's is my caregiver and everyday I cry because I cannot do simple tasks..I can eat minimal good because of migraine triggers and ibs..so I'm low fodmap..not much choice there..migraine is the worst with food triggers do I have limited good choices...so I watch the days and weeks and and years go by thinking death from Dysautonomia is only a matter of time. I'm a faithful follower of Christ however if this is good plan for me..I am not God..I just used to manage better but when family didn't want me around I declined. I see nobody but my bushman's..we are shut ins....I never leave the house..can't walk because of weather...muscles are obviously getting weaker like me...I'm hoping to hear from you..I've reached out to Dysautonomia international..I've talked to the author Kelly Freeman of DYSAUTONOMIA project I've talked to Dr David Goldstein. But pandemic kept me from going anywhere..now I can't because of whetting else..I'm lost in a sea of people..a name on many files but lost and forgotten..God bless you
You may be suffering from EHS or electromagnetic hypersensitivity. You have all the same symptoms that I did. I was disabled by this. I discovered the cause when I went off grid to a cabin in the woods with no electronics, including no cell phone. I had no symptoms of dysautonomia! I hadn't felt better in years! No headache, no brain fog, slept like a baby, heart rate normal, no dizziness, no nausea! I am better since eliminating all sources of wireless radiation -cell phones, wifi, cell towers, smart meter, ect. Absolutely all wireless devices have been eliminated from my life. I cannot function in any public space because my symptoms of dysautonomia recur quickly with any exposure to wireless devices. This is high frequency electricity not contained in wires but is transmitted through the air we breath and this electricity is what transfers data to and from your wireless electronics. It creates a high frequency electromagnetic field. Unfortunately, our bodies are disrupted by these high frequencies on the cellular level. The autonomic nervous system especially. Currently, I am symptom free. The medical profession is clueless. I am a physician and had to diagnose myself after being blown off and labeled with multiple misdiagnosis by my colleagues. The Environmental Health Center in Dallas, TX specializes in this. You can have a telehealth appointment if you can't travel. Their website is: www.ehcd.com Your story sounds so similar to mine. I, too, am a Christ follower. I will be praying for you. Websites: Physicians for safe technology (mdsafetech.org/), Environmental Health Trust (ehtrust.org) there are many more!
@@savedbygrace338 I agree with this. The brain is allllll connected through small amounts of electrical impulses. Same with our spinalcord and nervous system there are signals transmitted from our body to our brains and vice-versa. Cell phones and EMF deffinitley travel hlthrough walls so we can recieve an internet connection right? Makes sense this could interrupt our own neurology.
@@savedbygrace338 Very nice of you to give her a detailed explanation and info. I think your mission will be or is.. to research further and publicise this...
Eliminating wireless radiation from my life cured my dysautonomia. I was disabled from work due to the severity of my symptoms. I was a board certified general surgeon. I no longer use a cell phone, ipad, laptop, or wifi. Our computer is hardwired with an ethernet cable. We reinstalled a landline phone. My husband keeps his cell phone on airplane mode while he is at home. We got rid of our wireless security system and shielded our house from the local cell tower. I am now symptom free unless exposed to wireless devices. The medical profession is unaware that electromagnetic fields emitted from wireless technology/electronics disrupts the autonomic nervous system in susceptible individuals.
@@janetjones1456 I am so sorry you are suffering through this with no help! I was homebound for 1 1/2 years. It is such a long story. I am writing a book. I can now go out and about about once a week as wireless radiation is cumulative in the body, so I limit my exposure. The more exposure, the more sensitive you become. The less exposure, the less sensitive you are. When I have to go out in public and be exposed to people's wireless devices and cell towers, I premedicate with Adderall which prevents all of the symptoms that I get with dysautonomia-the list of symptoms I get is long, but what I notice first on exposure is dizziness, nausea, pressure in my head, tachycardia. Then that is followed by a severe migraine, depression, anxiety and inability to think or concentrate. Your story sounds similar to mine. If I hadn't figured out the cause, I suspect I would no longer be here. It was that severe. None of my medical colleagues could help me. I have gained my health back but it was a battle restructuring my environment to eliminate as much of the microwave radiation (all of our wireless electronics function in the microwave range of the electromagnetic spectrum) as I possibly could. Most days now, I am symptom free. I do not let anyone into my house unless they turn off their cell phone or put it on airplane mode with Bluetooth and WIFI setting turned off. Websites to educate yourself: Physicians for Safe technology; EHTrust.org (environmental health trust); weepinitiative.org; magdahavas.com There are so many more resources. I would recommend you start by turning off all wireless devices in your home; cell phone, wifi, printers, scanners, faxes, apple watches, tablets, cordless phones, security systems... anything that transmits a wireless signal. This portion of the electromagnetic spectrum can and will disrupt the very low frequency of our autonomic nervous system. It's called electromagnetic interference. Many people are suffering and my profession is of no help. In fact they are a hindrance to getting the help you need.
![Felix "Unfair" | [Stray Kids : SKZ-PLAYER]](http://i.ytimg.com/vi/Oswujxm2Ag0/mqdefault.jpg)
Thanks for the overview. Last month discovered I have a form of dysautonomia, and this over is great background.
Thst was an excellent overall description. The only suggestion I'd make is adding ME/CFS, PEM, & OI.
Thank you so informative
Thanks. Nicely covered such a complex thingy. Myself autistic so I am researching causes of symptoms not stated here , thinking prolonged anxiety started whatever I developed. The advice is never to run from bears..lol thx
Good quick synopsis
I was just diagnosed with Dysautonomia February of 2023.
So now are u fine ?
I have multiple system Dysautonomia
My blood sugar levels crashes into the 50s when I do certain movements or I bend over to pick anything off of the floor and when I lay on my left side.
Interesting Rachel (was that your name? I can't see it now but nice name. That's why I named my daughter that!) I used to get crazy palpitations in the 80's early 90's going to sleep I think on my R side and so I just had to go to sleep on my left side so too bad it was otherwise easier for me to go to sleep on my R side. I've been through hell and back with this diagnosis which naturally I just had to give myself btw. In fact I have a whole pile of mostly totally interrelated diagnoses and there are about zero that I haven't had at least a big part in getting to the bottoms of or just flat-out telling my doctors what it is I have. Obviously I've been right every time and I really don't have any trouble having them believe me anymore. Of course I do have a 30 year medical background myself so have a good understanding of what's going on but it's a good thing I know more than many of my doctors do about almost all of my issues (excepting my immunological and rheumatalogic issues) as you can seriously go to a board certified neurologist to say you want some help dealing with your dysautonomia and he might just say, "Oh we know nothing about dysautonomia! And even if we did there's nothing we can do about it anyway!"
Happened to me and then you have to think Well then why did you not feel guilty about me driving 20 miles to get here and wasting my entire day??? Because you know you're going to be exhausted from just having had to even go there! That is just plain nasty!!
@@joeynarciso94
Interesting...
I too get palpitations at night if I sleep on my right...which I realise is my ' default' position cos I always wake up with severe palpitations and I find myself sleeping on the right!.
I try to sleep on the left but I always end up on the right!
I have Pots and I personally suspect also 'brain pressure' ( IIH).
Do you have Pots?
How did you sort the palpitations sleeping on the right issue?
Do you have Pots Rachel?
I've never heard of such ' fluctuating' sugar levels as you describe...
I have Dermatomyositis and have Dysautonomia. Extremely bad. I have interstitial lung disease. I can tell you very very few people understand what the autonomic nervous system even does. Even when I try and explain it. I can not be out in the heat. Even 70 degrees. We have to keep my room at 50 degrees. I call it hibernation during the summer because I have to stay in my very cold room. My husband freezes but just puts on more clothing. I get palpitations constantly. Have had rapid heartbeat a lot which cardiology says I am getting an extra heartbeat in my lower chambers and an extra heartbeat in my upper chambers of my heart. They say it is the Dysautonomia. I captured the extra heartbeats like 20 minutes after putting the heart monitor on. I have to wear oxygen because of lung disease. I never smoked. Dysautonomia affects most every system in my body. From my eyes to digestion and so much more. It is absolutely terrible to deal with!
My heart goes out to you...I pray to God you get healed....❤
I too have this dreaded dysutonomia..Pots and I suspect ' brain pressure' ( IIH) as a complication of it or due to it. I hope I'm wrong and it turns out to be more of the dysatonomia symptoms.
From being very fit & healthy to practically disabled.
But I really hope we recover...
God bless ..
This happens to me
I’m struggling to find a doctor who deals with this in the Kansas City area. Any suggestions? I was diagnosed with this by two doctors and have numerous symptoms of dysautonomia.
My daughter has been diagnosed with orthostatic intolerance (via tilt-table test), but nothing she's been told to do helps in any way. I have my doubts about the diagnosis because what happens to her is that she is completely fine and normal for 2-4 weeks at a time, then she will suddenly be non-functional; severe brain fog, dizziness, slow speech, irritability, and all she can do is lay around for a week or so. She does not feel "better" when she's laying down. Then, after a week or so, she'll get "better" and be able to function normally again. When we compare these symptoms to others, it doesn't seem like it matches other people's experiences with orthostatic intolerance and POTS. Any advice?
My menstrual cycle effect my dysautonomia symptoms pretty intensely. I’m not sure how old your daughter is but that is definitely something to consider if you notice she has times when her symptoms are worse. Hydration and electrolytes are super important, especially during those times when I am having a bad flare up. I’m sorry your daughter is dealing with this and I hope she finds ways to cope, it’s a very frustrating condition to have 🖤
Try avoiding wireless radiation. Turn off Wi-Fi when not in use, especially at night. Keep cell phone on airplane mode with Wi-Fi and Bluetooth settings switched off. Limit time on wireless devices. Look for other wireless sources in her environment and shield them. Example: utility meters (called smart meters). Educate yourself on the dangers of wireless radiation. Don't believe any sources that tell you it is safe. Industry funding has corrupted and censored this information.
@@Chet_Thornbushel Thank you. Her menstrual cycle definitely affects her, but doesn't predict when she'll be totally wiped out. I know the fluids and electrolytes help. Thank you!
@@savedbygrace338 Thank you! It's something I've looked into for my son, but not my daughter. I appreciate the input!
@@kristenwilkinson9199 It looks like my comment got deleted. Here are the websites I sent in my reply: physicians for safe technology; Environmental Health Trust; Magda Havas There are so many more. This should help you get started. I hope this helps!
Covid gave me dysautonomia
Me too
X3
I had a milder dysautonomia, but after COVID, I'm home bound and completely disabled. Everything hit at once too. Périmenopause, metoo, where I faced my rapist on tv, which unlocked dissociation amnesia I didn't know I had , which brought a severe c-ptsd diagnosis.
So yeah, I have been bed bound since 2020. From a pretty active woman who ran a charity with a food bank etc to having the life of a vampire house cat.
Me too!!! I have dysautonomia and Long C. Currently not doing to bad though. Have a few nagging symptoms but lots of water and electrolytes and 3 different meds have helped me for sure.
Mee too...practically disabled now 😢
I have DYSAUTONOMIA..took years to diagnose 🥺😢💔...I suffer with nOH..wish you would have talked about that. Nobody does. Because of DYSAUTONOMIA I also have anxiety disorder..ibs..migraine my entire life..3PD..insomnia.
MCAS...dizzy all the time..I mean
all the time..I am homebound without a treatment plan because all medications such as midodrine caused too many side effects..as well as meds for ibs and MCAS..I watch video after video..yours at least explain a bit better..I do not renal any doctor tell me causes of DYSAUTONOMIA..I was diagnosed by the only autonomic disorder doctor in the state of Georgia where I happen to live now..woish I didn't 🥺..if you can help me at all I would welcome anything you might say. I am sick of hearing about POTS AND I know it's the most common..my niece has it plus EDS..but there are those like me who can't be helped and I don't accept that..but seems I have no choice..I dont move around much because of the dizziness and lack of motivation due to lack of energy because I don't exercise at all 😢I used to be a runner..now I hardly make it from point a to b...I have driven in 3-1/2 years and haven't been able to read a book on 2 years..I'm a Bob without purpose. My family doesn't better I'm sick or care 💔💔..my bushman's is my caregiver and everyday I cry because I cannot do simple tasks..I can eat minimal good because of migraine triggers and ibs..so I'm low fodmap..not much choice there..migraine is the worst with food triggers do I have limited good choices...so I watch the days and weeks and and years go by thinking death from Dysautonomia is only a matter of time. I'm a faithful follower of Christ however if this is good plan for me..I am not God..I just used to manage better but when family didn't want me around I declined. I see nobody but my bushman's..we are shut ins....I never leave the house..can't walk because of weather...muscles are obviously getting weaker like me...I'm hoping to hear from you..I've reached out to Dysautonomia international..I've talked to the author Kelly Freeman of DYSAUTONOMIA project I've talked to Dr David Goldstein.
But pandemic kept me from going anywhere..now I can't because of whetting else..I'm lost in a sea of people..a name on many files but lost and forgotten..God bless you
You may be suffering from EHS or electromagnetic hypersensitivity. You have all the same symptoms that I did. I was disabled by this. I discovered the cause when I went off grid to a cabin in the woods with no electronics, including no cell phone. I had no symptoms of dysautonomia! I hadn't felt better in years! No headache, no brain fog, slept like a baby, heart rate normal, no dizziness, no nausea! I am better since eliminating all sources of wireless radiation -cell phones, wifi, cell towers, smart meter, ect. Absolutely all wireless devices have been eliminated from my life. I cannot function in any public space because my symptoms of dysautonomia recur quickly with any exposure to wireless devices. This is high frequency electricity not contained in wires but is transmitted through the air we breath and this electricity is what transfers data to and from your wireless electronics. It creates a high frequency electromagnetic field. Unfortunately, our bodies are disrupted by these high frequencies on the cellular level. The autonomic nervous system especially. Currently, I am symptom free. The medical profession is clueless. I am a physician and had to diagnose myself after being blown off and labeled with multiple misdiagnosis by my colleagues. The Environmental Health Center in Dallas, TX specializes in this. You can have a telehealth appointment if you can't travel. Their website is: www.ehcd.com Your story sounds so similar to mine. I, too, am a Christ follower. I will be praying for you. Websites: Physicians for safe technology (mdsafetech.org/), Environmental Health Trust (ehtrust.org) there are many more!
@@savedbygrace338 what form of DYSAUTONOMIA did you have??
@@savedbygrace338 I agree with this. The brain is allllll connected through small amounts of electrical impulses. Same with our spinalcord and nervous system there are signals transmitted from our body to our brains and vice-versa. Cell phones and EMF deffinitley travel hlthrough walls so we can recieve an internet connection right? Makes sense this could interrupt our own neurology.
@@savedbygrace338
Very nice of you to give her a detailed explanation and info.
I think your mission will be or is.. to research further and publicise this...
God bless you Janet...I pray for your recovery...❤
❤
Eliminating wireless radiation from my life cured my dysautonomia. I was disabled from work due to the severity of my symptoms. I was a board certified general surgeon. I no longer use a cell phone, ipad, laptop, or wifi. Our computer is hardwired with an ethernet cable. We reinstalled a landline phone. My husband keeps his cell phone on airplane mode while he is at home. We got rid of our wireless security system and shielded our house from the local cell tower. I am now symptom free unless exposed to wireless devices. The medical profession is unaware that electromagnetic fields emitted from wireless technology/electronics disrupts the autonomic nervous system in susceptible individuals.
I didn't see this message from you until today..they both did not come together
Then are you homebound like me?? How can you leave your home without getting sick??
@@janetjones1456 I am so sorry you are suffering through this with no help! I was homebound for 1 1/2 years. It is such a long story. I am writing a book. I can now go out and about about once a week as wireless radiation is cumulative in the body, so I limit my exposure. The more exposure, the more sensitive you become. The less exposure, the less sensitive you are. When I have to go out in public and be exposed to people's wireless devices and cell towers, I premedicate with Adderall which prevents all of the symptoms that I get with dysautonomia-the list of symptoms I get is long, but what I notice first on exposure is dizziness, nausea, pressure in my head, tachycardia. Then that is followed by a severe migraine, depression, anxiety and inability to think or concentrate. Your story sounds similar to mine. If I hadn't figured out the cause, I suspect I would no longer be here. It was that severe. None of my medical colleagues could help me. I have gained my health back but it was a battle restructuring my environment to eliminate as much of the microwave radiation (all of our wireless electronics function in the microwave range of the electromagnetic spectrum) as I possibly could. Most days now, I am symptom free. I do not let anyone into my house unless they turn off their cell phone or put it on airplane mode with Bluetooth and WIFI setting turned off. Websites to educate yourself: Physicians for Safe technology; EHTrust.org (environmental health trust); weepinitiative.org; magdahavas.com There are so many more resources. I would recommend you start by turning off all wireless devices in your home; cell phone, wifi, printers, scanners, faxes, apple watches, tablets, cordless phones, security systems... anything that transmits a wireless signal. This portion of the electromagnetic spectrum can and will disrupt the very low frequency of our autonomic nervous system. It's called electromagnetic interference. Many people are suffering and my profession is of no help. In fact they are a hindrance to getting the help you need.
Dysautonomia SUCKS for me... and no one takes me serious. Makes me not want to be here.
So, do you never leave your house?
i might have it happins wen im sleeping wake up increased hr
Though you said Ass doctor nick ha.