The main symptoms for me is exhaustion, heat and excercise intolerence, doing any form of physical activity IMMEDIATELY makes me feel exhausted hot and sweaty, cant leave the house on a hot day, as the sun makes me feel absolutely drained, and i feel like tearing all my clothes off just to cool down, its horrible.
I have been mentioning theses symptoms to my doctors for 30 years. I've even brought up terms like dysautonomia, ehlers danlos, Lyme, pots, fibromyalgia, chronic fatigue, -still don't have officialdiagnosis. Going to new doc in sep. SO glad I found you!
@@j.haulum2444 For some ailments there's still no known lab test to diagnose. Only based on symptoms they will rule out. And thats after ruling out all other ailments thru lab tests. It was difficult to diagnose i had fibromyalgia too. I spent much on lab tests to rule out many ailments. Some prescribed by Doc & some i myself voluntarily did lab tests. At present fibromyalgia medication does work to some limits.
I don’t know where you live, but there is a dysautonomia specialist in Toledo, Ohio. They have an incredible program. I haven’t been there yet, but I got really fortunate to find a neurologist who has patients who have been treated. It’s unfortunately, treatment came far too late for me. I have just a few years left to live because I developed restrictive lung disease from chronic atelectasis (partial to full lung collapse). I was diagnosed at 13. I’m 53. Don’t let them tell you it’s all in your head. Don’t let them tell you it’s nothing.
@@MichiaMakes Trying to get in with the Mayo Clinic. I am fed up with just treating symptoms and being almost agoraphobia! My very best wishes to you❤️❤️
I'm 21 and I remember having symtoms since I was 9, I was diagnosed 3 months ago and it makes so much sense. Somehow I treated myself (before having a diagnosis) by drinking gatorade, eating salt and sitting upside down
I have a question does this sound like Dysautonomia/POTS? Around 2018 of November when I was 15 I caught a stomach bug along with my family that caused Vomiting but then we felt great after a day. Then in January of 2019 I was already 16 I started feeling a little bit weird in the head, then nausea in throat. Next morning woke up and in school started feeling Nauseous and fatigued. Had to call my mom to pick me up. I would start to Yawn excessively like if I didn’t get sleep, then a day later started having frequent Acid Reflux. My pedriatician suspected gastritis or H pylori which I was tested for then it was negative. I was prescribed a PPI which didn’t helped a lot, the nausea and Excessive yawning was still present. Acid reflux was no longer acid now it was just burping gas, They then suspected Gallbladder issues or problems with my liver and again tests came fine which made my mom mad and told me to stop making things up. Fast forward around April burping was less frequent but still dealt with Nausea, Fatigue and developed Head and arms tingling sensations. By June symptoms were less frequent but still dealt with them some days. Around July went on a family trip to San Antonio TX zoo and when I was in the sun, I started to yawn and feeling nauseous like sea sick and felt like throwing up. When I was in the hotel I noticed that my feet were red but didn’t told my mom. So in October is when the Lightheadness after standing started alongwith fast heart rate and my vision got blurry. In December they took me to cardiologist but they didn’t perform TTT. Instead they just attached a bunch of plugs that would track my hr. Cardiologist also said “This is normal because You’re a tall gentlemen but this will go away on its own and just take salt” By 2020 during the pandemic, I no longer had all the symptoms previously mentioned. I felt 100 healed, I caught covid and felt ill for maybe a month but I got recovered. I had been able to live a normal life until a few weeks ago this happened, I was running outside because I started to run ever since February 2024, and that day I felt ill at night and my body was very warm and next day felt like sea sick, I thought maybe dehydration so I started chugging Electrolytes. Felt bad for days but that didn’t stop me from exercising and the one day I went to sleep then felt my head spinning and nausea. Next morning I felt like if I got of a roller coaster. Then I was coughing then I tested positive for Covid 19 and ever since again the Symptoms of 2019 which are Nausea, Fatigue, Burping and Fast heart rate when standing are back.
since i had covid 3 months ago, i have an adrenergic affect, ie, loud noise jerks my whole body and my heart races horribly, and my BP is outta whack. i feel i am always on edge. i learned this was a symptom of ‘long covid’.
I am currently 16 years old and have been dealing with a lot the past 4 years now and just a few weeks ago got a diagnosis. After going to over 20 doctor's and neurologist's, getting yelled at over the phone saying it's not real, and multiple days crying and just wishing I felt better again. I haven't gotten a exact diagnosis at the moment but I got the general dysautonomia diagnosis. I am beyond happy that I got a diagnosis even tho there is a possibility I won't be able to go back to a complete normal life.
Yes, the average length of time to get a Dysautonomia diagnosis is about 3-5 yrs. Finding out the cause of your Dysauto. is another story. I got my Dysauto. diagnosis 7 yrs. ago, and to this day, All of these doctors still haven't determined the cause of it. Altho I've strongly suspected Sjogren's Syndrome, which has the primary symptoms of dry eyes & mouth, Small Fiber Neuropathy (SFN) & joint pain issues. But their blood test for SS is only 65% accurate, which came back Neg. for me, so they won't give me the Sjogren's diagnosis, even though I have most of the symptoms for it. If you have dry eyes & mouth, then you may likely have Sjogren's. If you almost faint or do faint after standing up from sitting or lying down, and your heart rate increases dramatically, then you may have POTS, which a lot of young women have.
@@andrewc3458 I don't faint, I get really dizzy like I'm going to but that's when I'm mid episode. My episodes vary from involuntary head movement feeling pressure on my chest full on panic and a bunch more that I don't want to go in detail
Hi Hope. You poor thing. I feel so sorry for you guys that have gotten this thing so young! 😢 I have the tremors, palpitations and involuntary head movements too. They're so frustrating & debilitating! 😓 Please look up and read everything done/said/written by Dr Driscoll and Dr Nemechek. I'm in Australia, so it's too much $$$ to see/work with Dr Driscoll, but I'm reading her book atm and I'm doing what Dr Nemechek recommends (I do the fish oil with SPM, I actually drink the evoo in water, lol and take the inulin powder too. I don't do the AB though). Research/Google etc and read/watch as much as you can. I do think that all of these Dysautonomias have something in common = inflammation and a lack of acetylcholine (in the body/brain). I just don't think that doctors have figured that out yet. Look up Myasthenia Gravis too! 😉 All the very best to you (all) ❤💪🌹🫂
@@andrewc3458hi there. PLEASE look up Dr Driscoll. She has articles & videos online everywhere. She also makes some products/supps for the things that you're describing. I'm currently reading the pdf (I converted it to a Word document & printed it out) that one of her receptionists emailed to me and it's really good. Imo, I think that Dr Driscoll is onto SO many things re POTS/Dysautonomia/EDS/Sjögren's Syndrome etc. I think she's got a lot of it right! 😉 Good luck! 🙏
Ok so at 35 I’m finally figuring out all my health problems (POTS, Cronic migraines, cyclical vomiting disorder,etc) are probably all due to dysautonomia. My dr referred me to a specialist but I’m he only person in the state who can diagnose this has a 2 yr wait list!
I don’t know where you live, but there is a dysautonomia specialist in Toledo, Ohio. They have an incredible program. I haven’t been there yet, but I got really fortunate to find a neurologist who has patients who have been treated. It’s unfortunately, treatment came far too late for me. I have just a few years left to live because I developed restrictive lung disease from chronic atelectasis (partial to full lung collapse). I was diagnosed at 13. I’m 53. Don’t let them tell you it’s all in your head. Don’t let them tell you it’s nothing.
ANYONE who reads or watches this, have your doctor check your b12 and d3 levels!!! I’ve been suffering for years and it TOOK YEARS Before my doctor thought to check those levels!! I felt like my “ lights” were going out is the best way to explain it. I felt better almost immediately after starting these 2 supplements! I just hope my nerve damage isn’t permanent. It can take 6 months to a year of supplements to get the full benefit ….
I have POTS. I was finally diagnosed after about 7 years. I suspected it and mentioned it to my doctors. I was brushed off until my symptoms became undeniable.
I was just diagnosed with this after a week in the ICU. I have every symptom mentioned here. They had to stop my heart and restart it at one point. I am so sick. I start going to a dysautonomia therapy clinic soon.
I don’t know where you live, but there is a dysautonomia specialist in Toledo, Ohio. They have an incredible program. I haven’t been there yet, but I got really fortunate to find a neurologist who has patients who have been treated. It’s unfortunately, treatment came far too late for me. I have just a few years left to live because I developed restrictive lung disease from chronic atelectasis (partial to full lung collapse). I was diagnosed at 13. I’m 53. Don’t let them tell you it’s all in your head. Don’t let them tell you it’s nothing.
OMG, I have been struggling with these symptoms for years now. The heart doctor thinks it's a heart thing. The PCP thinks it's everything from stress to depression to rheumatoid arthritis. My gastro keeps testing me and scoping me and finding nothing wrong. I've been tested for low T, low Estrogen, polio, Lyme's. I've had 2 colonoscopies, 2 heart attacks and three stents which have not fixed these symptoms. My labs keep coming back normal (this is the most frustrating thing.) I feel like a have a small case of the flu every day of my freaking life. Not sick enough to stay home, but certainly sick enough to make life miserable. I have stopped enjoying anything. My inability to regulate my body temp is the worst symptom. I'll go from wrapped up in a blanket with thermal underwear on sitting on a heating pad to sweating and shucking off clothes and back again all while simply sitting watching TV. My recent heart catheter held promise for relieving this heaviness I feel in my arms and chest and weakness but it didn't get better. I have an appointment with an arthritis doctor in two weeks and hope to get some help. This is miserable.
Please look up Dr Driscoll! After researching this for years and years, I think that most of us have issues with acetylcholine. Best of luck to you. Don't give up! 💝
I used to a jack rabbit, super athletic. Then one day in middle school, I just couldn’t do anything. If I did sprints or weights I would get light headed, blurred vision, and hearing would get muffled. I felt like I was going to pass out. I got testing done, and they said I should take salt tablets. My diet didn’t change from when I was a kid so I know something is wrong. 🙃
I was put on Florinef, and just put on Midodrine. Nasty side effects, I'll do it so I can have surgery on my back and not crash on the operating room table again. Then I'm going off this crap.
Yes, that's what is called 'Exercise Intolerance', one of the symptoms of Dysautonomia. When I first heard of it, I thought it was funny - how can a person be 'intolerant' of exercise. Then I found out what that meant, b/c around the time I was diagnosed w/Dysautonomia, I would be completely wiped out for a whole day just from playing tennis for 1 1/2 hrs, which never happened to me before.
Same. I don’t know where you live, but there is a dysautonomia specialist in Toledo, Ohio. They have an incredible program. I haven’t been there yet, but I got really fortunate to find a neurologist who has patients who have been treated. It’s unfortunately, treatment came far too late for me. I have just a few years left to live because I developed restrictive lung disease from chronic atelectasis (partial to full lung collapse). I was diagnosed at 13. I’m 53. Don’t let them tell you it’s all in your head. Don’t let them tell you it’s nothing.
Living with dysautnomia sucks, it feel like you have the flu every single day! It’ sucks.. I had to give up wrestling because I fainted right on the Matt from emotional distress.. that’s scared me so much.. I’ve fainted a total of 16 times just this year and I can’t walk around for long periods of time without feeling week.. some days I go to work, and I’m tired only after a 4 hour shift sometimes I can’t get through the first hour cause I’m constantly tired and I have lost a total of 20 lbs in only 2 months
@@tomprovan6817 I know you mean well, but, you are not a doctor. and unless you have it, please don't tell a person with it what to do. in most cases people have tried a lot. it's like telling a cancer patient to, "do yoga it'll heal you." No, it will not. She has dysautonomia, not a vitamin deficiency.
@@karmstrong6566 hey, I just wanted to write in my case, I've been diagnosed with Dysautonomia and CFS(Chronic fatigue syndrome) plus, I think, vitamin deficiency, because after I took some vitb&c supplements, I felt better, in a weeks time, I just wanted to inform that if you have Dysautonomia, there may be a secondary problem laying around, but you can't see it, coz it's so mild, so if you have some type of illness, you should think of an underlying problem underneath and get it checked out, I wish you guys well, and this is just my case, but I hope it helps
@@karmstrong6566 Yes, you're right about that. Her doctor needs to have a comprehensive blood work done on her, if haven't been done already, to determine if she does indeed have Any Vit. or Mineral Deficiencies. Every 'body' is different; what works for one person doesn't mean it'll work for you.
Mine started with small fiber peripheral neuropathy. Then started having random symptoms of dysautonomia but each symptom isn’t all the time! It’s trouble swallowing, vertigo, balance problems, sluggish bowels, reflux, weakness, low heart rate usually 50 bpm, high bp,fatigue, all of the symptoms SOMETIMES , except the sluggish bowels, low heart rate and fatigue all the time! If I hadn’t come across this channel I wouldn’t have had any idea what is most likely going on 😳 I’m disappointed that most neurologists aren’t knowledgeable about this. I’ll check your website and hopefully there’s one in my are
I don’t know where you live, but there is a dysautonomia specialist in Toledo, Ohio. They have an incredible program. I haven’t been there yet, but I got really fortunate to find a neurologist who has patients who have been treated. It’s unfortunately, treatment came far too late for me. I have just a few years left to live because I developed restrictive lung disease from chronic atelectasis (partial to full lung collapse). I was diagnosed at 13. I’m 53. Don’t let them tell you it’s all in your head. Don’t let them tell you it’s nothing.
@@MichiaMakes Aw I’m so sorry about your condition! I don’t even remember writing that comment 😳 I live in the south. I can find out if there’s a neurologist that treats it. I thought I needed to go to a functional medicine doctor and I’m 65 and on fixed income. I heard it’s really expensive to get treated with those doctors! If I can find a neurologist that treats it it may be cheaper. Thanks you for the information. I hope it’s not too late for me but I know where I’m going when I die, so either way I’m good ☺️ You are truly a blessing to have taken the time to write me the message that you did. God bless you Boop and again thank you 🙏
@@SusanDayz3912 I haven’t been formally diagnosed but my primary md thinks I do have peripheral neuropathy. I just got Medicare so now that I have insurance maybe I can delve further into it ! I’m sorry it took me so long to respond but I lost your message and couldn’t remember what video I had made the comment on 🙄
@@MichiaMakes shoot sorry I responded then it got deleted by accident. I’m very sorry to hear about your condition and I will keep you in my prayers. I live in Canada and unfortunately they are very conservative about running any tests here because it comes at the cost of the taxpayer. I was diagnosed with fibromyalgia four years ago, and as I’ve come to learn, that is a symptom not a diagnosis.
I has irritable bowel syndrome from almost 10 years...i believe it's related to Dysautonomia...It takes more than 5 years for to know i has ibs...how i would discovered Dysautonomia as well if there is no blood test for this too. Invisible things sucks.
Suzan Serrano Actually not always. I am an example of someone with orthostatic intolerance or POTS, in mine simply gets worse whenever I am vertical including sitting upright. I was very fit before so maybe that’s why. I often have to bail out of the checkout line and rush to the minivan where I keep a bed.. It is a horrible feeling staving off passing out and convulsions. When my PEM is worse from exertion I can also have faster response when getting up or out of bed, And have to crawl to the bathroom…
@@mudslinger888 I only listed 2 ways to diagnose. There are probably other ways, especially when the physician is a specialist in the disorder. I have not met a specialist in my area. My cardiologist just happened to be an awesome research cardiologist that had the ANSAR test, but dysautonomia is not his expertise. I don't even know what type I have, it's something sympathovagal something something. Dysautonomia is complex
@@mudslinger888 I have the convulsions too. I always thought it was neurological. Makes me sad it's because I don't have blood flow to my brain. So scary.
@@Sara-world It is Neurological; Dysautonomia is aka Autonomic Dysfunction, which means your Autonomic Nervous System is not functioning properly. Your ANS regulates various bodily systems, inc. cardiovascular, blood pressure. Neurological is your nervous system.
I have this diagnosis and would like to inform you that extraneous background noises make this video very difficult. The trend adding layers of complexity in noises is a hige stressor. It is ignorance. Those of us fighting for our lives, doing our own research, struggle with this very lack of public understanding. Please make informative videos with out extra pollution!
I may be mistaken, but I believe EDS basically includes a diagnosis of dysautonomia, the way autism includes a diagnosis of sensory processing disorder. You only have to get these “add-ons” officially diagnosed if they are separate from a condition that includes them. The reason I came to this conclusion for dysautonomia is from the very good video here on TH-cam from Palm Beach Gardens Medical Center. It is 25 minutes long with a cardiologist in mint green scrubs. He specifically talks about EDS at 22:23
I have almost all of those you stated we except diagnosis of the last one. To add go that, which I think go hand in hand with mine, I found out I had Prolonged QT, which caused my right ventricular hypertrophy and my biggest struggle is hypersomnia ever since.
I live in Canada and canadian health care is just broken. Everytime i go to the dr i either get told i have anxiety or am exaggerating... i just need a diagnosis to get my family off my back with telling me its in my head.
I need help. Im suffering with many of these symptoms including loss of consciousness which resulted in breaking my arm. All 3 of my doctors are lost. Help.
every time. EVERY time i see something on dysautonomia i see more i relate to 😭of the symptoms listed here i don't have three!! though i'm not sure what counts as losing conciousness i black out on my feet sometimes but it doesn't typically last long and i don't usually fall over or anything)
I have this too. My vision goes black and I get lightheaded, need to hold on to something but I don’t faint. Been telling doctors for 30 years. Nothing but blank stares as a reply. I actually hate doctors for this. Hate!
@@twinstarssystem2857 it’s awful because medications can make the difference between having a life or being a shut in. Mestinon/pyridostigmine is supposed to be a help. Read about it. You can get it if you Google around enough
I can totally relate to the "blacking out on my feet", it usually happens to me if I get out of the car and start walking. Takes everything you have to try and not fall down. 😔
What causes this condition? What are the treatments? Do regular doctors recognize this as a Disorder or is it brushed off like other holistic or functional ideas.
I have a question does this sound like Dysautonomia/POTS? Around 2018 of November when I was 15 I caught a stomach bug along with my family that caused Vomiting but then we felt great after a day. Then in January of 2019 I was already 16 I started feeling a little bit weird in the head, then nausea in throat. Next morning woke up and in school started feeling Nauseous and fatigued. Had to call my mom to pick me up. I would start to Yawn excessively like if I didn’t get sleep, then a day later started having frequent Acid Reflux. My pedriatician suspected gastritis or H pylori which I was tested for then it was negative. I was prescribed a PPI which didn’t helped a lot, the nausea and Excessive yawning was still present. Acid reflux was no longer acid now it was just burping gas, They then suspected Gallbladder issues or problems with my liver and again tests came fine which made my mom mad and told me to stop making things up. Fast forward around April burping was less frequent but still dealt with Nausea, Fatigue and developed Head and arms tingling sensations. By June symptoms were less frequent but still dealt with them some days. Around July went on a family trip to San Antonio TX zoo and when I was in the sun, I started to yawn and feeling nauseous like sea sick and felt like throwing up. When I was in the hotel I noticed that my feet were red but didn’t told my mom. So in October is when the Lightheadness after standing started alongwith fast heart rate and my vision got blurry. In December they took me to cardiologist but they didn’t perform TTT. Instead they just attached a bunch of plugs that would track my hr. Cardiologist also said “This is normal because You’re a tall gentlemen but this will go away on its own and just take salt” By 2020 during the pandemic, I no longer had all the symptoms previously mentioned. I felt 100 healed, I caught covid and felt ill for maybe a month but I got recovered. I had been able to live a normal life until a few weeks ago this happened, I was running outside because I started to run ever since February 2024, and that day I felt ill at night and my body was very warm and next day felt like sea sick, I thought maybe dehydration so I started chugging Electrolytes. Felt bad for days but that didn’t stop me from exercising and the one day I went to sleep then felt my head spinning and nausea. Next morning I felt like if I got of a roller coaster. Then I was coughing then I tested positive for Covid 19 and ever since again the Symptoms of 2019 which are Nausea, Fatigue, Burping and Fast heart rate when standing are back.
EDIT: I’m sorry for my typos and bad grammar my phone is glitchy so much! Does anyone else have severe adrenal issues too?? I think adrenals are the extend nervous system kind of right? 🤔 and I Tourette syndrome, sleep apnea and asthma history! I have blood sugar issues but I had two normal a1cs over a year ago and I have been labeled a very extremely massive hypochondriac for 11 years but pretty much ever major claim ended up to come out to be true this year 😭 I’m getting a lot of ableism and gaslighting unfortunately from my family and I absolutely can’t take care of myself. I have extreme urinary excess and loss of bladder control and Brady and tachy almost an arrhythmia if not an arrhythmia. This is fun,lol but I’m grateful despite being told some pretty offensive things and being humiliated and shamed so much that I got diagnosed so quickly. I get my testing done February 2nd . Also the dr that originally diagnosed me , granted he’s very old for a dr and has been working professionally for about 45 years , always said I needed to see a psychiatrist and when I could not walk I forced myself to his office eventually after months in a wheelchair bc I was desperate and he got so frustrated and begged my mom to make me go to a psychiatric hopslital to be assested for a mental breakdown but I got assessed many times lol, it is baffling that a dr who knew of dysautonomia in 2020 didn’t think it could be that bad, plus adrenal issues that are bad too. Wonder if that’s common . What I’ve been through is extremely embarsssing and hurtful from many types of professionals and it has me tearing up thinking about it. And what I go through with people in gereral so often it’s tough. I probably don’t have POTS so idk what all is wrong with me I’m very upset I shut this out my head 247 and am constantly in a freeze state I was in a ginormous insane fight or flight earlier this year and I haven’t gotten therapy still unfortunately. I’m so depressed and I have no one to talk to . It seems everyone just hates that this happened to me and they resent me for it. I literally am in a survival mode so badly constantly and I can’t process or function cognitively either. Feel like I can never have children and prettt much confident I can’t but I wouldn’t anyways being so sick. I lost all contact with my family and they seem to hate me . They just don’t under stand and I just want someone to talk to and the er is the only time I can potentially get support nobody deserves to live worried about everything like that and consumed of any type of sickness. I will pray for our world everyday bc suffering seems inevitable for anyone almost now in all types of ways 🙏🏻
I was diagnosed with Nureocardiogenic syncope. But there are symptoms I have that don't fit that. Also, some of those symptoms I don't have. Plus, I believe that's supposed to be temporary. Recently, I heard TH-camrs describe having POTS. They described those symptoms I have that do not fit NCS. I printed off a symptoms list for both and found that the NCS symptoms I have are all on the POTS list too. The ones I don't have are not. Also, the symptoms I have that are not on the NCS list are on the POTS list. I'd like to make sure I have the correct diagnosis. I tried to talk to my EP specialist who treats me for the NCS. But his nurse won't let me through. She says they are both dysautonomia and it makes no difference which I have. I disagree. I need to know if I have NCS, POTS, both, or some other form of dysautonomia. Even if the treatment doesn't change, I still need to know. Does anybody know how to tell the difference between them? How do I get and make sure I have the correct diagnosis? What tests should I be asking for?
A Tilt Table Test will show if you have POTS and some other forms of Dysautonomia. If there is an increase of 30 bpm or more or in excess of 120 bpm upon standing within 10 minutes, that is the diagnostic criteria for POTS.
I have learned the hard way, if a doctors' office will not listen or treats you as you have described - fire them. Find a new doctor. There are doctors that really do care; search until you find one. Ask around, read reviews, be willing to keep trying. Even different forms of POTS can have different treatments. Listen to Diana Driscoll and Blair Grubb, MD on TH-cam to gain valuable insight.
Nurse is correct. It’s all the same thing. It’s like a Ven diagram. The observation of the symptoms came first. The diagnosis is just a description of most of the symptoms. It’s all dysautonomia.
I have been diagnosed for 10 years and using cannabis every day to get up in the morning and to eat and hold food down i stopped taking the nasty salt tablets got off the tap water and only drink purified water cannabis helps most of my issues and I'm slowly starting to be able to live somewhat of a normal life I'm also slowly but surely starting to gain weight I also don't take anything but cannabis but I'm not going to recommend that ........... I am doing what works for me but it seems to be working
yes, that is possible. dysautonomia is all about extremes. some people have bradycardia, some people have tachycardia, some people have both. some people have hypotension, some people have hypertension, some people have both. i have hypotension (low bp) and bradycardia (low heart rate) but even then i sometimes get tachycardic.
Your best bet is to find a doctor knowledgeable of dysautonomia and bring our Handout with you. Come prepared with a list of symptoms, in order of severity and a list of questions to discuss. Make a log over a week with recorded blood pressure and heart rate readings. Note what you are doing when you take them, sitting and standing and present this too to the doctor. The more you know, the better you can assist your doctor in pursuing testing. Good Luck! ttps://www.dysautonomiasupport.org/wp-content/uploads/2023/03/Dysautonomia-Handout-5_compressed-1.pdf
Wow. The doctor who diagnosed my Idiopathic Orthostatic Hypotension never mentioned that it's part of dysautonomia. I've also encountered a doctor who wanted to prescribe a drug to LOWER my blood pressure even more! When I reminded him about my history of low blood pressure, he replied that everyone in my age group takes this drug. I had to fire that doctor for refusing to listen to me.
I Have Dysautonomia POTS , it's scary at first but now I know what it is , I was diagnosed in 2016 it has been continuously going on lately and stress makes my symptoms worse , I have to relax but it hard to when I get the Tachycara this Disorder is Genetic I'm Ashkinazi Jewish that's why I have it . Who else here I'd Jewish like me , ? 🤗
Yes that is exactly what prompted me to study autonomic dysautonomia. Now I also have a diagnosis for mast cell activation syndrome, why all this data cannot be correlated properly only confirms the reality that profit is denying sufferers a life.. Even after decades of research and solid evidence I get glassy stares from the doctors at Kaiser Permanente. I cannot believe they are all this ignorant, they seem to be brainwashed into only offering drugs and mental health referrals. I can only guess how many suicides as a result of this complete lack of professional acknowledgment. I strongly feel this is an additional injury and stressor. I am grateful for the Facebook support groups I have found. Millions of us have lost all social interaction. Millions missing and extremely lonely. Sad
@@monicaz4949 I just learned about this disorder today so I decided to look it up. I have fibromyalgia, but there are many days where I feel like it must be something else.
What blows my mind is that you don't mention Myalgia encephalomyelitis tied to CFS & PEM?? The most common of the autonomic disorders, and now seen to be found in many Long COVID sufferers. Heck, you didnt even mention EDS. You might consider updating this video, & lose the music. Very agitating to lots of people with ME/ CFS. Btw, it can cause inflammation in the brain, spine, & peripheral nervous systems as well. It is a very serious disease affecting at least 70 million Americans. Might want to mention it since most doctors still dont know about it. Ive had it for well over a decade & have veen misdiagnosed multiple times, & untreated. As such, I’m now in the severe category. Know what you're talking about if your going to put out information on such a serious topic. Otherwise, you can send people down rabbit hole after rabbit hole, not knowing they’re missing the key piece of the puzzle.
No cure? Great 😞 I got diagnosed with this at cardiologist with tests didn’t even know what this was . I had severe b12 issues and nerve damage that went on slowly for years not knowning till too late and many more symptoms Been treating it with shots for a year but it caused much damage and caused dysautomia it seems It could get better with shots or May not cus there is no cure it seems
If you've suffered neuropathy from the b12 deficiency then that can't heal, although other symptoms may reduce with treatment. The problem is getting treatment in the first place as you can be symptomatic for years but still be at the very bottom end of the lab's "normal" range and even an endocrinologist will shrug and load you up with D that your body can't even process instead. Doctors are eternally useless and refuse to listen until it's well past too late.
There is a doctor here on TH-cam who has the exact same last name as you he has his own channel dr. Paul Haider and you should tell him what you have because he knows about a lot of powerful natural Healers
This is one of the single most annoying videos I have seen on TH-cam. The music is both maddeningly repetitious and distracting. The delays in the spoken content to wait for the drawings to happen make for content that is anything but easy to listen to.
TERRIBLE voice over, irritating background music, croaky. erratic, unprofessional....😩 The whole video feels like something the janitorial staff were given $50 to make. This is a TERRIBLE disease that deserves some actual effort to be made in presenting the information ! ☹️
Can people in the comments who don't even have the disorder, stop acting like they have a PhD? Just because they did 5 minutes of research of a conspiracy theory? thanks!
Seriously. Health anxiety is significantly more common than this disorder. Maybe the reason people's doctors haven't diagnosed this is because they don't have it.
A lot of us are already diagnosed. For those still seeking a diagnosis but suffering most or all of the symptoms, it must feel good to finally find something that matches their symptoms, without a diagnosis, we can't even get treatment, that's why it's so hard to wait to find out what's going on, but we all seem to wait far too long, suffering - before we even know what to call what is happening to us. I'm diagnosed, others here are searching for answers, which includes asking questions. remember, there are no stupid questions - only stupid answers. Let's not judge those seeking answers, they're desperate, like we were before we were diagnosed with dysautonomia. (which still very much sucks even after a diagnosis)
The main symptoms for me is exhaustion, heat and excercise intolerence, doing any form of physical activity IMMEDIATELY makes me feel exhausted hot and sweaty, cant leave the house on a hot day, as the sun makes me feel absolutely drained, and i feel like tearing all my clothes off just to cool down, its horrible.
Look up ME and CFS. I suspect you have it bc you have it, but it sounds like earlier stages, which is a positive
I have those symptoms too, I put peppermint oil on the back of my neck when it’s hot outside.
@@81redddddo you have muscle pain do you have heds
I have been mentioning theses symptoms to my doctors for 30 years. I've even brought up terms like dysautonomia, ehlers danlos, Lyme, pots, fibromyalgia, chronic fatigue, -still don't have officialdiagnosis. Going to new doc in sep.
SO glad I found you!
🙄 So you found treatment?
Did you get answers?
No reply yet 😏
Me too. Here take this pill, if that doesn’t kill you we will try another one
@@j.haulum2444 For some ailments there's still no known lab test to diagnose. Only based on symptoms they will rule out. And thats after ruling out all other ailments thru lab tests.
It was difficult to diagnose i had fibromyalgia too. I spent much on lab tests to rule out many ailments. Some prescribed by Doc & some i myself voluntarily did lab tests. At present fibromyalgia medication does work to some limits.
I hate this damn disorder! Tired of no answers and being miserable.
I don’t know where you live, but there is a dysautonomia specialist in Toledo, Ohio. They have an incredible program. I haven’t been there yet, but I got really fortunate to find a neurologist who has patients who have been treated.
It’s unfortunately, treatment came far too late for me. I have just a few years left to live because I developed restrictive lung disease from chronic atelectasis (partial to full lung collapse). I was diagnosed at 13. I’m 53. Don’t let them tell you it’s all in your head. Don’t let them tell you it’s nothing.
@@MichiaMakes Trying to get in with the Mayo Clinic. I am fed up with just treating symptoms and being almost agoraphobia! My very best wishes to you❤️❤️
How are you now@@MichiaMakes
I'm 21 and I remember having symtoms since I was 9, I was diagnosed 3 months ago and it makes so much sense. Somehow I treated myself (before having a diagnosis) by drinking gatorade, eating salt and sitting upside down
I have a question does this sound like Dysautonomia/POTS? Around 2018 of November when I was 15 I caught a stomach bug along with my family that caused Vomiting but then we felt great after a day. Then in January of 2019 I was already 16 I started feeling a little bit weird in the head, then nausea in throat. Next morning woke up and in school started feeling Nauseous and fatigued. Had to call my mom to pick me up. I would start to Yawn excessively like if I didn’t get sleep, then a day later started having frequent Acid Reflux. My pedriatician suspected gastritis or H pylori which I was tested for then it was negative. I was prescribed a PPI which didn’t helped a lot, the nausea and Excessive yawning was still present. Acid reflux was no longer acid now it was just burping gas, They then suspected Gallbladder issues or problems with my liver and again tests came fine which made my mom mad and told me to stop making things up. Fast forward around April burping was less frequent but still dealt with Nausea, Fatigue and developed Head and arms tingling sensations. By June symptoms were less frequent but still dealt with them some days. Around July went on a family trip to San Antonio TX zoo and when I was in the sun, I started to yawn and feeling nauseous like sea sick and felt like throwing up. When I was in the hotel I noticed that my feet were red but didn’t told my mom. So in October is when the Lightheadness after standing started alongwith fast heart rate and my vision got blurry. In December they took me to cardiologist but they didn’t perform TTT. Instead they just attached a bunch of plugs that would track my hr. Cardiologist also said “This is normal because You’re a tall gentlemen but this will go away on its own and just take salt” By 2020 during the pandemic, I no longer had all the symptoms previously mentioned. I felt 100 healed, I caught covid and felt ill for maybe a month but I got recovered. I had been able to live a normal life until a few weeks ago this happened, I was running outside because I started to run ever since February 2024, and that day I felt ill at night and my body was very warm and next day felt like sea sick, I thought maybe dehydration so I started chugging Electrolytes. Felt bad for days but that didn’t stop me from exercising and the one day I went to sleep then felt my head spinning and nausea. Next morning I felt like if I got of a roller coaster. Then I was coughing then I tested positive for Covid 19 and ever since again the Symptoms of 2019 which are Nausea, Fatigue, Burping and Fast heart rate when standing are back.
since i had covid 3 months ago, i have an adrenergic affect, ie, loud noise jerks my whole body and my heart races horribly, and my BP is outta whack. i feel i am always on edge. i learned this was a symptom of ‘long covid’.
Me too
I am currently 16 years old and have been dealing with a lot the past 4 years now and just a few weeks ago got a diagnosis. After going to over 20 doctor's and neurologist's, getting yelled at over the phone saying it's not real, and multiple days crying and just wishing I felt better again. I haven't gotten a exact diagnosis at the moment but I got the general dysautonomia diagnosis. I am beyond happy that I got a diagnosis even tho there is a possibility I won't be able to go back to a complete normal life.
Yes, the average length of time to get a Dysautonomia diagnosis is about 3-5 yrs. Finding out the cause of your Dysauto. is another story. I got my Dysauto. diagnosis 7 yrs. ago, and to this day, All of these doctors still haven't determined the cause of it. Altho I've strongly suspected Sjogren's Syndrome, which has the primary symptoms of dry eyes & mouth, Small Fiber Neuropathy (SFN) & joint pain issues. But their blood test for SS is only 65% accurate, which came back Neg. for me, so they won't give me the Sjogren's diagnosis, even though I have most of the symptoms for it.
If you have dry eyes & mouth, then you may likely have Sjogren's. If you almost faint or do faint after standing up from sitting or lying down, and your heart rate increases dramatically, then you may have POTS, which a lot of young women have.
@@andrewc3458 I don't faint, I get really dizzy like I'm going to but that's when I'm mid episode. My episodes vary from involuntary head movement feeling pressure on my chest full on panic and a bunch more that I don't want to go in detail
@@hopeh472 Just giving you some info. from a lot of research I've done on Dysautonomia. Not expecting you to discuss your symptoms.
Hi Hope.
You poor thing. I feel so sorry for you guys that have gotten this thing so young! 😢
I have the tremors, palpitations and involuntary head movements too. They're so frustrating & debilitating! 😓
Please look up and read everything done/said/written by Dr Driscoll and Dr Nemechek. I'm in Australia, so it's too much $$$ to see/work with Dr Driscoll, but I'm reading her book atm and I'm doing what Dr Nemechek recommends (I do the fish oil with SPM, I actually drink the evoo in water, lol and take the inulin powder too. I don't do the AB though). Research/Google etc and read/watch as much as you can.
I do think that all of these Dysautonomias have something in common = inflammation and a lack of acetylcholine (in the body/brain). I just don't think that doctors have figured that out yet. Look up Myasthenia Gravis too! 😉
All the very best to you (all) ❤💪🌹🫂
@@andrewc3458hi there. PLEASE look up Dr Driscoll. She has articles & videos online everywhere. She also makes some products/supps for the things that you're describing. I'm currently reading the pdf (I converted it to a Word document & printed it out) that one of her receptionists emailed to me and it's really good. Imo, I think that Dr Driscoll is onto SO many things re POTS/Dysautonomia/EDS/Sjögren's Syndrome etc. I think she's got a lot of it right! 😉 Good luck! 🙏
Ok so at 35 I’m finally figuring out all my health problems (POTS, Cronic migraines, cyclical vomiting disorder,etc) are probably all due to dysautonomia. My dr referred me to a specialist but I’m he only person in the state who can diagnose this has a 2 yr wait list!
Oh no !!!! That’s awful 😢
"we know you're dying but please wait 24 months"
I don’t know where you live, but there is a dysautonomia specialist in Toledo, Ohio. They have an incredible program. I haven’t been there yet, but I got really fortunate to find a neurologist who has patients who have been treated.
It’s unfortunately, treatment came far too late for me. I have just a few years left to live because I developed restrictive lung disease from chronic atelectasis (partial to full lung collapse). I was diagnosed at 13. I’m 53. Don’t let them tell you it’s all in your head. Don’t let them tell you it’s nothing.
Go on a low histamine diet
Sounds like body symptoms of CFS/ME withot the cognitive paralization. 🤔🧐
ANYONE who reads or watches this, have your doctor check your b12 and d3 levels!!! I’ve been suffering for years and it TOOK YEARS Before my doctor thought to check those levels!! I felt like my “ lights” were going out is the best way to explain it. I felt better almost immediately after starting these 2 supplements! I just hope my nerve damage isn’t permanent. It can take 6 months to a year of supplements to get the full benefit ….
Same as me! Just started supplements but hoping they work. I have severe heat intolerance and can’t sweat at all!
I have POTS. I was finally diagnosed after about 7 years. I suspected it and mentioned it to my doctors. I was brushed off until my symptoms became undeniable.
I was just diagnosed with this after a week in the ICU. I have every symptom mentioned here. They had to stop my heart and restart it at one point. I am so sick. I start going to a dysautonomia therapy clinic soon.
I don’t know where you live, but there is a dysautonomia specialist in Toledo, Ohio. They have an incredible program. I haven’t been there yet, but I got really fortunate to find a neurologist who has patients who have been treated.
It’s unfortunately, treatment came far too late for me. I have just a few years left to live because I developed restrictive lung disease from chronic atelectasis (partial to full lung collapse). I was diagnosed at 13. I’m 53. Don’t let them tell you it’s all in your head. Don’t let them tell you it’s nothing.
Where are you located?
@@kellyo8718 Raleigh, NC. I go to UNC Hospitals for care.
OMG, I have been struggling with these symptoms for years now. The heart doctor thinks it's a heart thing. The PCP thinks it's everything from stress to depression to rheumatoid arthritis. My gastro keeps testing me and scoping me and finding nothing wrong. I've been tested for low T, low Estrogen, polio, Lyme's. I've had 2 colonoscopies, 2 heart attacks and three stents which have not fixed these symptoms. My labs keep coming back normal (this is the most frustrating thing.) I feel like a have a small case of the flu every day of my freaking life. Not sick enough to stay home, but certainly sick enough to make life miserable. I have stopped enjoying anything.
My inability to regulate my body temp is the worst symptom. I'll go from wrapped up in a blanket with thermal underwear on sitting on a heating pad to sweating and shucking off clothes and back again all while simply sitting watching TV. My recent heart catheter held promise for relieving this heaviness I feel in my arms and chest and weakness but it didn't get better. I have an appointment with an arthritis doctor in two weeks and hope to get some help. This is miserable.
Please look up Dr Driscoll!
After researching this for years and years, I think that most of us have issues with acetylcholine. Best of luck to you. Don't give up! 💝
Me too. I’m gonna finally mention this at my sept annual checkup. It’s so frustrating
I used to a jack rabbit, super athletic. Then one day in middle school, I just couldn’t do anything. If I did sprints or weights I would get light headed, blurred vision, and hearing would get muffled. I felt like I was going to pass out. I got testing done, and they said I should take salt tablets. My diet didn’t change from when I was a kid so I know something is wrong. 🙃
Happened to me one day out of the blue. Haven't been the same since.
Have you looked into May Thurner or Pelvic Congestion?
My IR thinks POTS may be linked to venous Insufficiency and compression.
I was put on Florinef, and just put on Midodrine. Nasty side effects, I'll do it so I can have surgery on my back and not crash on the operating room table again. Then I'm going off this crap.
@@lilaworley8935 how do they treat those conditions?
Yes, that's what is called 'Exercise Intolerance', one of the symptoms of Dysautonomia. When I first heard of it, I thought it was funny - how can a person be 'intolerant' of exercise. Then I found out what that meant, b/c around the time I was diagnosed w/Dysautonomia, I would be completely wiped out for a whole day just from playing tennis for 1 1/2 hrs, which never happened to me before.
I got hit pretty bad with a double whammy concussion. In Sept and just recently got diagnosed. My lowest body temp this week was 92.9.
Same. I don’t know where you live, but there is a dysautonomia specialist in Toledo, Ohio. They have an incredible program. I haven’t been there yet, but I got really fortunate to find a neurologist who has patients who have been treated.
It’s unfortunately, treatment came far too late for me. I have just a few years left to live because I developed restrictive lung disease from chronic atelectasis (partial to full lung collapse). I was diagnosed at 13. I’m 53. Don’t let them tell you it’s all in your head. Don’t let them tell you it’s nothing.
@@MichiaMakes oh jeez. Hope for the best for you. I’m in Denver and it was 6 months before I got any real treatment at all
Living with dysautnomia sucks, it feel like you have the flu every single day! It’ sucks.. I had to give up wrestling because I fainted right on the Matt from emotional distress.. that’s scared me so much.. I’ve fainted a total of 16 times just this year and I can’t walk around for long periods of time without feeling week.. some days I go to work, and I’m tired only after a 4 hour shift sometimes I can’t get through the first hour cause I’m constantly tired and I have lost a total of 20 lbs in only 2 months
Have you tried increasing your vitamin b1 intake? If not try that let me know if that helps. tkx
@@tomprovan6817 I know you mean well, but, you are not a doctor. and unless you have it, please don't tell a person with it what to do. in most cases people have tried a lot. it's like telling a cancer patient to, "do yoga it'll heal you." No, it will not. She has dysautonomia, not a vitamin deficiency.
@@karmstrong6566 hey, I just wanted to write in my case, I've been diagnosed with Dysautonomia and CFS(Chronic fatigue syndrome) plus, I think, vitamin deficiency, because after I took some vitb&c supplements, I felt better, in a weeks time, I just wanted to inform that if you have Dysautonomia, there may be a secondary problem laying around, but you can't see it, coz it's so mild, so if you have some type of illness, you should think of an underlying problem underneath and get it checked out, I wish you guys well, and this is just my case, but I hope it helps
@@karmstrong6566 I have dysautonomia and some supplements do help with all the different organ issues.
@@karmstrong6566 Yes, you're right about that. Her doctor needs to have a comprehensive blood work done on her, if haven't been done already, to determine if she does indeed have Any Vit. or Mineral Deficiencies. Every 'body' is different; what works for one person doesn't mean it'll work for you.
Mine started with small fiber peripheral neuropathy. Then started having random symptoms of dysautonomia but each symptom isn’t all the time! It’s trouble swallowing, vertigo, balance problems, sluggish bowels, reflux, weakness, low heart rate usually 50 bpm, high bp,fatigue, all of the symptoms SOMETIMES , except the sluggish bowels, low heart rate and fatigue all the time! If I hadn’t come across this channel I wouldn’t have had any idea what is most likely going on 😳 I’m disappointed that most neurologists aren’t knowledgeable about this. I’ll check your website and hopefully there’s one in my are
How were you diagnosed with small fibre neuropathy? That is what I think I have. What specialist did you see?
I don’t know where you live, but there is a dysautonomia specialist in Toledo, Ohio. They have an incredible program. I haven’t been there yet, but I got really fortunate to find a neurologist who has patients who have been treated.
It’s unfortunately, treatment came far too late for me. I have just a few years left to live because I developed restrictive lung disease from chronic atelectasis (partial to full lung collapse). I was diagnosed at 13. I’m 53. Don’t let them tell you it’s all in your head. Don’t let them tell you it’s nothing.
@@MichiaMakes Aw I’m so sorry about your condition! I don’t even remember writing that comment 😳 I live in the south. I can find out if there’s a neurologist that treats it. I thought I needed to go to a functional medicine doctor and I’m 65 and on fixed income. I heard it’s really expensive to get treated with those doctors! If I can find a neurologist that treats it it may be cheaper. Thanks you for the information. I hope it’s not too late for me but I know where I’m going when I die, so either way I’m good ☺️ You are truly a blessing to have taken the time to write me the message that you did. God bless you Boop and again thank you 🙏
@@SusanDayz3912 I haven’t been formally diagnosed but my primary md thinks I do have peripheral neuropathy. I just got Medicare so now that I have insurance maybe I can delve further into it ! I’m sorry it took me so long to respond but I lost your message and couldn’t remember what video I had made the comment on 🙄
@@MichiaMakes shoot sorry I responded then it got deleted by accident. I’m very sorry to hear about your condition and I will keep you in my prayers. I live in Canada and unfortunately they are very conservative about running any tests here because it comes at the cost of the taxpayer. I was diagnosed with fibromyalgia four years ago, and as I’ve come to learn, that is a symptom not a diagnosis.
I has irritable bowel syndrome from almost 10 years...i believe it's related to Dysautonomia...It takes more than 5 years for to know i has ibs...how i would discovered Dysautonomia as well if there is no blood test for this too. Invisible things sucks.
ANSAR test or Table Tilt Test can diagnose dysautonomia
Suzan Serrano Actually not always. I am an example of someone with orthostatic intolerance or POTS, in mine simply gets worse whenever I am vertical including sitting upright. I was very fit before so maybe that’s why. I often have to bail out of the checkout line and rush to the minivan where I keep a bed.. It is a horrible feeling staving off passing out and convulsions. When my PEM is worse from exertion I can also have faster response when getting up or out of bed, And have to crawl to the bathroom…
@@mudslinger888 I only listed 2 ways to diagnose. There are probably other ways, especially when the physician is a specialist in the disorder. I have not met a specialist in my area. My cardiologist just happened to be an awesome research cardiologist that had the ANSAR test, but dysautonomia is not his expertise. I don't even know what type I have, it's something sympathovagal something something. Dysautonomia is complex
@@mudslinger888 I have the convulsions too. I always thought it was neurological. Makes me sad it's because I don't have blood flow to my brain. So scary.
@@Sara-world It is Neurological; Dysautonomia is aka Autonomic Dysfunction, which means your Autonomic Nervous System is not functioning properly. Your ANS regulates various bodily systems, inc. cardiovascular, blood pressure.
Neurological is your nervous system.
I have this diagnosis and would like to inform you that extraneous background noises make this video very difficult. The trend adding layers of complexity in noises is a hige stressor. It is ignorance. Those of us fighting for our lives, doing our own research, struggle with this very lack of public understanding. Please make informative videos with out extra pollution!
Thank you for your feedback, feel free to mute the video.
Space Force Um, ageism much lol? Sorry, but it’s true you made an ageist comment.
@@DysSupport how can i mute the video to get rid of the horrible background noise and still be able to hear the narrator?
@@SuperGuanine you'd have to use captions
Oh wow! I’ve noticed that background music in videos bother me too! I sure didn’t relate it to the dysautonomia tho
Just got diagnosed either EDS by my doctor and suspect I have disautonomia since I have a lot of the issues mentioned here. Thanks for the video
I may be mistaken, but I believe EDS basically includes a diagnosis of dysautonomia, the way autism includes a diagnosis of sensory processing disorder. You only have to get these “add-ons” officially diagnosed if they are separate from a condition that includes them. The reason I came to this conclusion for dysautonomia is from the very good video here on TH-cam from Palm Beach Gardens Medical Center. It is 25 minutes long with a cardiologist in mint green scrubs. He specifically talks about EDS at 22:23
I have Lupus, pjogren POTS Gastroperisis, enlarged right ventrical, Autonomic Neuropathy, Dysphagia, Psjogrens, Pancriatitis. A total of 19 diseases.
I have almost all of those you stated we except diagnosis of the last one. To add go that, which I think go hand in hand with mine, I found out I had Prolonged QT, which caused my right ventricular hypertrophy and my biggest struggle is hypersomnia ever since.
Oh my gosh I’m sooo sorry 😢
Tanya you sound like me how did you finally get diagnosed my heart dr told me I had pots but refused to do the tilt table test 🤦🏻♀️
I live in Canada and canadian health care is just broken. Everytime i go to the dr i either get told i have anxiety or am exaggerating... i just need a diagnosis to get my family off my back with telling me its in my head.
Gaslighting supreme. It is so demoralizing.
Same here in Australia x
I need help. Im suffering with many of these symptoms including loss of consciousness which resulted in breaking my arm. All 3 of my doctors are lost. Help.
Any progress?
every time. EVERY time i see something on dysautonomia i see more i relate to 😭of the symptoms listed here i don't have three!! though i'm not sure what counts as losing conciousness i black out on my feet sometimes but it doesn't typically last long and i don't usually fall over or anything)
I have this too. My vision goes black and I get lightheaded, need to hold on to something but I don’t faint. Been telling doctors for 30 years. Nothing but blank stares as a reply. I actually hate doctors for this. Hate!
@@elsagrace3893 mine straight up said "yeah you have all the symptoms of pots but we're not going to test you because you're young" and im. -.-
@@twinstarssystem2857 it’s awful because medications can make the difference between having a life or being a shut in. Mestinon/pyridostigmine is supposed to be a help. Read about it. You can get it if you Google around enough
@@elsagrace3893 thank you very much :)
I can totally relate to the "blacking out on my feet", it usually happens to me if I get out of the car and start walking. Takes everything you have to try and not fall down. 😔
What causes this condition? What are the treatments? Do regular doctors recognize this as a Disorder or is it brushed off like other holistic or functional ideas.
I have a question does this sound like Dysautonomia/POTS? Around 2018 of November when I was 15 I caught a stomach bug along with my family that caused Vomiting but then we felt great after a day. Then in January of 2019 I was already 16 I started feeling a little bit weird in the head, then nausea in throat. Next morning woke up and in school started feeling Nauseous and fatigued. Had to call my mom to pick me up. I would start to Yawn excessively like if I didn’t get sleep, then a day later started having frequent Acid Reflux. My pedriatician suspected gastritis or H pylori which I was tested for then it was negative. I was prescribed a PPI which didn’t helped a lot, the nausea and Excessive yawning was still present. Acid reflux was no longer acid now it was just burping gas, They then suspected Gallbladder issues or problems with my liver and again tests came fine which made my mom mad and told me to stop making things up. Fast forward around April burping was less frequent but still dealt with Nausea, Fatigue and developed Head and arms tingling sensations. By June symptoms were less frequent but still dealt with them some days. Around July went on a family trip to San Antonio TX zoo and when I was in the sun, I started to yawn and feeling nauseous like sea sick and felt like throwing up. When I was in the hotel I noticed that my feet were red but didn’t told my mom. So in October is when the Lightheadness after standing started alongwith fast heart rate and my vision got blurry. In December they took me to cardiologist but they didn’t perform TTT. Instead they just attached a bunch of plugs that would track my hr. Cardiologist also said “This is normal because You’re a tall gentlemen but this will go away on its own and just take salt” By 2020 during the pandemic, I no longer had all the symptoms previously mentioned. I felt 100 healed, I caught covid and felt ill for maybe a month but I got recovered. I had been able to live a normal life until a few weeks ago this happened, I was running outside because I started to run ever since February 2024, and that day I felt ill at night and my body was very warm and next day felt like sea sick, I thought maybe dehydration so I started chugging Electrolytes. Felt bad for days but that didn’t stop me from exercising and the one day I went to sleep then felt my head spinning and nausea. Next morning I felt like if I got of a roller coaster. Then I was coughing then I tested positive for Covid 19 and ever since again the Symptoms of 2019 which are Nausea, Fatigue, Burping and Fast heart rate when standing are back.
EDIT: I’m sorry for my typos and bad grammar my phone is glitchy so much!
Does anyone else have severe adrenal issues too?? I think adrenals are the extend nervous system kind of right? 🤔 and I Tourette syndrome, sleep apnea and asthma history! I have blood sugar issues but I had two normal a1cs over a year ago and I have been labeled a very extremely massive hypochondriac for 11 years but pretty much ever major claim ended up to come out to be true this year 😭 I’m getting a lot of ableism and gaslighting unfortunately from my family and I absolutely can’t take care of myself. I have extreme urinary excess and loss of bladder control and Brady and tachy almost an arrhythmia if not an arrhythmia. This is fun,lol but I’m grateful despite being told some pretty offensive things and being humiliated and shamed so much that I got diagnosed so quickly. I get my testing done February 2nd . Also the dr that originally diagnosed me , granted he’s very old for a dr and has been working professionally for about 45 years , always said I needed to see a psychiatrist and when I could not walk I forced myself to his office eventually after months in a wheelchair bc I was desperate and he got so frustrated and begged my mom to make me go to a psychiatric hopslital to be assested for a mental breakdown but I got assessed many times lol, it is baffling that a dr who knew of dysautonomia in 2020 didn’t think it could be that bad, plus adrenal issues that are bad too. Wonder if that’s common . What I’ve been through is extremely embarsssing and hurtful from many types of professionals and it has me tearing up thinking about it. And what I go through with people in gereral so often it’s tough. I probably don’t have POTS so idk what all is wrong with me I’m very upset I shut this out my head 247 and am constantly in a freeze state I was in a ginormous insane fight or flight earlier this year and I haven’t gotten therapy still unfortunately. I’m so depressed and I have no one to talk to . It seems everyone just hates that this happened to me and they resent me for it. I literally am in a survival mode so badly constantly and I can’t process or function cognitively either. Feel like I can never have children and prettt much confident I can’t but I wouldn’t anyways being so sick. I lost all contact with my family and they seem to hate me . They just don’t under stand and I just want someone to talk to and the er is the only time I can potentially get support nobody deserves to live worried about everything like that and consumed of any type of sickness. I will pray for our world everyday bc suffering seems inevitable for anyone almost now in all types of ways 🙏🏻
I was diagnosed with Nureocardiogenic syncope. But there are symptoms I have that don't fit that. Also, some of those symptoms I don't have. Plus, I believe that's supposed to be temporary. Recently, I heard TH-camrs describe having POTS. They described those symptoms I have that do not fit NCS. I printed off a symptoms list for both and found that the NCS symptoms I have are all on the POTS list too. The ones I don't have are not. Also, the symptoms I have that are not on the NCS list are on the POTS list. I'd like to make sure I have the correct diagnosis. I tried to talk to my EP specialist who treats me for the NCS. But his nurse won't let me through. She says they are both dysautonomia and it makes no difference which I have. I disagree. I need to know if I have NCS, POTS, both, or some other form of dysautonomia. Even if the treatment doesn't change, I still need to know. Does anybody know how to tell the difference between them? How do I get and make sure I have the correct diagnosis? What tests should I be asking for?
A Tilt Table Test will show if you have POTS and some other forms of Dysautonomia. If there is an increase of 30 bpm or more or in excess of 120 bpm upon standing within 10 minutes, that is the diagnostic criteria for POTS.
I have learned the hard way, if a doctors' office will not listen or treats you as you have described - fire them. Find a new doctor. There are doctors that really do care; search until you find one. Ask around, read reviews, be willing to keep trying. Even different forms of POTS can have different treatments. Listen to Diana Driscoll and Blair Grubb, MD on TH-cam to gain valuable insight.
Nurse is correct. It’s all the same thing. It’s like a Ven diagram. The observation of the symptoms came first. The diagnosis is just a description of most of the symptoms. It’s all dysautonomia.
I have been diagnosed for 10 years and using cannabis every day to get up in the morning and to eat and hold food down i stopped taking the nasty salt tablets got off the tap water and only drink purified water cannabis helps most of my issues and I'm slowly starting to be able to live somewhat of a normal life I'm also slowly but surely starting to gain weight I also don't take anything but cannabis but I'm not going to recommend that ........... I am doing what works for me but it seems to be working
Cbd oil helps me too!
Whatever works!! At least it’s natural!!
It causes ms as well ???
Is it possible to have this and have high blood pressure and tachycardia?
yes, that is possible. dysautonomia is all about extremes. some people have bradycardia, some people have tachycardia, some people have both. some people have hypotension, some people have hypertension, some people have both. i have hypotension (low bp) and bradycardia (low heart rate) but even then i sometimes get tachycardic.
I do.
Yes definitely possible.
Yep. My BP is either very high or very low. Same with heart rate.
You will know it when you have it.
So we're and how do you get a proper diagnosis from
Your best bet is to find a doctor knowledgeable of dysautonomia and bring our Handout with you. Come prepared with a list of symptoms, in order of severity and a list of questions to discuss. Make a log over a week with recorded blood pressure and heart rate readings. Note what you are doing when you take them, sitting and standing and present this too to the doctor. The more you know, the better you can assist your doctor in pursuing testing. Good Luck! ttps://www.dysautonomiasupport.org/wp-content/uploads/2023/03/Dysautonomia-Handout-5_compressed-1.pdf
www.dysautonomiasupport.org/healthcare-provider-map/
So, perhaps we could finally look at long list of symptoms and see we have 1 or2 diseases rather than a 2 page list the doctor rolls his eyes at!
Is this symptomatic of tethered cord ? It sounds like what I go through.
Is Idiopathic Orthostatic Hypotension under the umbrella of dysautonomia?
Neurogenic orthostatic hypotension is
Wow. The doctor who diagnosed my Idiopathic Orthostatic Hypotension never mentioned that it's part of dysautonomia. I've also encountered a doctor who wanted to prescribe a drug to LOWER my blood pressure even more! When I reminded him about my history of low blood pressure, he replied that everyone in my age group takes this drug. I had to fire that doctor for refusing to listen to me.
I just got diagnosed
I Have Dysautonomia POTS , it's scary at first but now I know what it is , I was diagnosed in 2016 it has been continuously going on lately and stress makes my symptoms worse , I have to relax but it hard to when I get the Tachycara this Disorder is Genetic I'm Ashkinazi Jewish that's why I have it . Who else here I'd Jewish like me , ? 🤗
I'm genetically ashkinazi jewish from my mom's side, but I always thought this was from my Italian side. No askinazi jewish there.
hey cousin!
DNRS!!
My cardiologist thinks I have this
I’ve got all these symptoms and is awful shit
What if I smell bad?
Shower.
This sounds a WHOLE LOT like ME/CFS. Hmmmmm.
It can be part of ME, Jeannie. That's the case with me.... Wish you well!
Yes that is exactly what prompted me to study autonomic dysautonomia. Now I also have a diagnosis for mast cell activation syndrome, why all this data cannot be correlated properly only confirms the reality that profit is denying sufferers a life.. Even after decades of research and solid evidence I get glassy stares from the doctors at Kaiser Permanente. I cannot believe they are all this ignorant, they seem to be brainwashed into only offering drugs and mental health referrals. I can only guess how many suicides as a result of this complete lack of professional acknowledgment. I strongly feel this is an additional injury and stressor. I am grateful for the Facebook support groups I have found. Millions of us have lost all social interaction. Millions missing and extremely lonely. Sad
This is exactly what I’ve been saying. I have a cfs diagnosis but I most certainly have dysautonomia.
Dysautonomia encompasses ME/CFS.
@@monicaz4949 I just learned about this disorder today so I decided to look it up. I have fibromyalgia, but there are many days where I feel like it must be something else.
What blows my mind is that you don't mention Myalgia encephalomyelitis tied to CFS & PEM?? The most common of the autonomic disorders, and now seen to be found in many Long COVID sufferers. Heck, you didnt even mention EDS. You might consider updating this video, & lose the music. Very agitating to lots of people with ME/ CFS. Btw, it can cause inflammation in the brain, spine, & peripheral nervous systems as well. It is a very serious disease affecting at least 70 million Americans. Might want to mention it since most doctors still dont know about it. Ive had it for well over a decade & have veen misdiagnosed multiple times, & untreated. As such, I’m now in the severe category.
Know what you're talking about if your going to put out information on such a serious topic. Otherwise, you can send people down rabbit hole after rabbit hole, not knowing they’re missing the key piece of the puzzle.
Yes.
No cure? Great 😞 I got diagnosed with this at cardiologist with tests didn’t even know what this was . I had severe b12 issues and nerve damage that went on slowly for years not knowning till too late and many more symptoms
Been treating it with shots for a year but it caused much damage and caused dysautomia it seems
It could get better with shots or May not cus there is no cure it seems
If you've suffered neuropathy from the b12 deficiency then that can't heal, although other symptoms may reduce with treatment. The problem is getting treatment in the first place as you can be symptomatic for years but still be at the very bottom end of the lab's "normal" range and even an endocrinologist will shrug and load you up with D that your body can't even process instead. Doctors are eternally useless and refuse to listen until it's well past too late.
I have mvp syndrome. It just keeps getting worse and worse
How did you find out you have it? Do you have to take meds?
There is a doctor here on TH-cam who has the exact same last name as you he has his own channel dr. Paul Haider and you should tell him what you have because he knows about a lot of powerful natural Healers
This is one of the single most annoying videos I have seen on TH-cam. The music is both maddeningly repetitious and distracting. The delays in the spoken content to wait for the drawings to happen make for content that is anything but easy to listen to.
TERRIBLE voice over, irritating background music, croaky. erratic, unprofessional....😩
The whole video feels like something the janitorial staff were given $50 to make.
This is a TERRIBLE disease that deserves some actual effort to be made in presenting the information ! ☹️
I had no idea that this could cause weight loss.
Can people in the comments who don't even have the disorder, stop acting like they have a PhD? Just because they did 5 minutes of research of a conspiracy theory? thanks!
Seriously. Health anxiety is significantly more common than this disorder. Maybe the reason people's doctors haven't diagnosed this is because they don't have it.
AMEN
A lot of us are already diagnosed. For those still seeking a diagnosis but suffering most or all of the symptoms, it must feel good to finally find something that matches their symptoms, without a diagnosis, we can't even get treatment, that's why it's so hard to wait to find out what's going on, but we all seem to wait far too long, suffering - before we even know what to call what is happening to us. I'm diagnosed, others here are searching for answers, which includes asking questions.
remember, there are no stupid questions - only stupid answers. Let's not judge those seeking answers, they're desperate, like we were before we were diagnosed with dysautonomia. (which still very much sucks even after a diagnosis)