So validating when Dr Hakim is talking about patients knowing the difference between anxiety and when their autonomic system is going wrong, I experience that frequently and have also experienced it with anaphylaxis (due to my MCAS) when doctors thought I was "just" having a panic attack but was actually having my first big allergic reaction.
AMEN! I've been told so many times my symptoms are stress and anxiety.. while my heart races and my BP shoots up and down, passing out when I stand up, broken bones, 2 concussions. One ER doc stood in the doorway of the cubicle and said I was fine, I could go ...oh, and take my own EKG leads off.
People say ‘ why are you anxious ?’ Well I am not but my fight / flight system is extremely faulty , over reactive SO I can be so anxious going through a grocery checkout if it is busy , or walking through food court with children , to much noise , or if running late for anything YET , I can do a random public talk without an extra heartbeat and feel calm and connected not confused Do you get what I am saying ? Also I can appear racy like I I. Have had speed , or meth ( ICE ) Racy or no motivation
Thank you so much! I am Hypermobile type with terrible Dysautonomic symptoms and this is the best explanation I have seen so far, especially for others who don't quite understand the situations I deal with daily.
Sounds like this Doctor could educate many many GP’s who medically gaslight their patients. I’ve had a journey from hell for nearly 4 years due to undereducated lazy GP’s. I’m now with an autonomic function team. I used to be like an athlete now I nearly faint after a short walk!
I'm on year 3 now of feeling like this!! It drives me crazy because I love training yet I can't push hard at all. Still trying to find the proper diagnosis with a GP. I've had countless tests done but none have looked at this.
I have NMH…. So frustrating but basically try to “warn” my coworkers (nurse) friends, family what may possibly happen( I have warnings sometimes/ sometimes not). It seems it has touched just about every bodily function others take for granted. I have accepted that this is just how I am. Interestingly enough, with reading and lectures such as this, apparently there’s a correlation of childhood trauma experience/ response and autonomic disorders(amongst other things). I’ve lived much of my life wondering why I am the way I am. So fortunate to see these disorders being discussed & the enlightenment it has provided to caregivers and general public. I’m living a full life, self aware, but just deal with it daily as best I can which is all anyone can do.
I have a version of this that causes my blood pressure to go from deadly Hypertensive crisis during the day to dropping so low at night randomly that I go into shock. It has destroyed my kidneys and brain. I also have RSD, Tachycardia, have had multiple strokes, gastroparesis, etc. One thing that I have had for a long time had this weird sleep disorder thing that I have never felt comfortable telling a doctor because I thought they would think I was crazy. After watching this I finally think I understand. If I get overtired from overdoing it during the day and I try to sleep that night, not only does my bp and heart rate drop so low (like Heart rate 34 and bp of 60/40) but often when I try to fall asleep I will get this sensation of falling but then I get this weird shocking sensation that is painful all over my body that seems like something is literally shocking me back awake. Because of this I don't get proper sleep. During a sleep study, my neurologist said it showed that my own brain was shocking me back awake over and over again so I was never going into proper sleep. Has anyone else experienced this? My current doctors have no clue how to treat me and seem to have given up. I wish there was a legit doctor near me in NY that was knowledgeable like this man.
@@trulifrea8073 , I'm so sorry you are going through this. It is upsetting and stressful. The number one thing that has helped me is finding hope in Jesus. I should have been dead so many times but it is by the grace of God that I am still here. I will pray for you right now. Feel better and God bless you.
I’ve been suffering for over a year to the point of relocating south . Not only is my immune and B12 high but I have a swollen esophagus , high level of inflammation to the point of chest burning along with pain , and symptoms above . I would run to er and hospitalized 5 times last year. Still no diagnosis or treatment plan yet . My bp will rise to 240/120 easy and drop 110/65 etc . There is no in between for me at all . This sounds promising to me .
Fits me perfectly. 5 er Visits and no diagnosis either I have all of ehat you and this doc explains. They say it's anxiety and it's way more and it causes anxiety.
I see SSRI (serotonin reuptake inhibitors) on a list in this vid, but what's helped me with spine and rib pain and mobility is an SNRI prescribed for fibromyalgia symptoms, Duloxetine specifically, increasing my norepinephrine. I need to lay down several times a day, and Kineseo Tape on my ankles helps with pain, as well as blood and lymph flow. Compression socks are too painful, but I may try them one more time in a very light compression.
Yes, four or so years after starting it, the SNRI duloxetine still helps with my chronic pain. Facial Counterstrain physical therapy has been helpful, too, when other types of PT and massage have just made things worse. And treating my severe PMS with a daily progesterone-only pill has also helped me. The progesterone pill is also a treatment option for folks with endometriosis (when uterus lining cells grow on the outside of other organs and shed during menstruation). Good luck! 🍀🥄🦓🥄🥄🥄🥄
Had braincancer and elevated blood pressure, thus taking bisoprolol since age 12, and im having poop-syncope since then, blacking out on the toilet. Happened only some 20 times since then, but finally I saw this video and go to the doctor again.
I have Vascular EDS. I have 2 Brain Aneurysms and they found one behind my Heart. I was told the walls are very thin. I also have Heart Disease. I have Panic Attacks in my sleep and throughout the day. I have 3 Strokes. I pass out, like someone flipped a switch. I hate to say this but I have Everything you put up there. My stomach bloats so bad I look very pregnant. My legs become so deformed from water retention ( if you press on my lower legs with a finger or thumb it leaves a big dent that doesn’t go away for at least an hour) from the Heart Disease and High Blood Pressure p. Physical therapy didn’t help me. They told me sorry. Where do I go I can’t walk anymore, I’m in a wheelchair. I also have Severe Hypermobility and Extreme Fatigue. Skin Tearing, My hair is now falling out in clumps. I’m sorry I wrote so much, funny, there is so so much more. I am so scared. I had Brain Surgery on one of my Aneurysms, the other they don’t want to touch. The one behind my heart, the Cardiologist basically told me I was going to die, there is nothing we can do about that one either. I’m defeated and lonely and feel so hopeless. I have no one, friends were afraid watching what is happening to me and slowly drifted away, especially when they saw all the braces I have to wear. Doctors laugh at me, make fun of me.I’m so sorry. I also have had a Retnal Detachment and am left with double vision and Macular problems
It might be a help to talk with others. We have support groups for people with vascular EDS, information is available www.ehlers-danlos.com/virtual-support/ - and perhaps the helpline can assist in finding answers, www.ehlers-danlos.com/eds-helpline/
So sorry you’re suffering, I have most of the same symptoms and am bedridden. You’re so right about how all the friends leave, even family. It’s so lonely that’s the worst. I haven’t left my house since Christmas. Sending you hugs and gratitude 🙏
God bless you! Stay strong you are here for a reason! I got a service dog for my many eds based conditions. He alerts to my blood surgar highs and lows, helps with support when i get shakey, and even alerts me before my heart starts racing and i faint due to the POTS so i can sit down, he is always there for me and it really helps me feel not so alone and afraid when i have an issue by my self, dogs are angels 😇
I'm doomed then as I have at least 5 diagnosed conditions that each can cause fatigue... It's no wonder that my GP said that she doesn't think that I will ever be free of fatigue. I was asked recently by an assessor why I've not been referred to a CF clinic... My response was I didn't know that they existed but more importantly, given my medical history, they probably wouldn't be able to do all that much as the root of the problem wouldn't be all that clear cut. Depressing.
@@xLovebirdx - yes, I have thought about a functional medicine doctor but I'm not sure if they could help me either. They seem really expensive here in the UK and my faith is waning in there being anyone who can/could help. You see, there's so many things going on and one of the main conditions requires me to ever more be in an iron deficient state. I'm viewed as complex... 🙄
Thank u🙏🏻🙏🏻🙏🏻 I get no help in Sweden about my sickness. I have so many sickness the doc give me here is crazy. I have so many bad disk in my neck and back. diaper every night because I do not have a feeling in the groin due to so many injuries in the back (Spondylosis, spondilites, sciatica lumbago, disc herniation L4 and L5 plus modic type 2) I have disc herniation c4-c6 . due to my disk that crashed (c4) I got permanent nerve damage in my whole body, that pain is the worst I have been and live with. get loss of sensation in the face in arms I have chronic Lyme disease. but receives no treatment in Sweden. I have too high white platelets but the doctors just say we do not know why. I have around 15 diagnos I even have bad fick sickness. My sleep is around 2-4 per night this make me really more sick. When I wake up I have sooo mutch pain🤔
I’m always hearing of POTS or orthostatic hypotension. I think I have a dysautonomia that is actually fatal and I think I’m the only person in the world with this type of dysautonomia. I think I have pure autonomic failure or something along those lines because I am getting worse and not recovering.
@HistoryBuff It’s been about 7 months since my original comment and I still stand by it. I have not worsened but because I have been really careful with what I put inside of my body. I believe my condition can become fatal in a matter of minutes by ingesting the wrong thing. I didn’t mention this in my original comment, but I developed dysautonomia overnight two years ago, from a preworkout supplement I had purchased online. Hence why I believe I have a rare type of dysautonomia.
Same here everyday I get worse. I feel static electricity everywhere randomly in my body. Certain muscles go numb with zero warning and sharp stabbing pains from top of head to bottom of feet. My body has turned into my own living Hell
My daughter has EDS. She is getting worse everyday. She is 21 and this started when she was 14. She has major automatic disfunction. She also gets electric shocks through her chest, arms and head. Her body is burning up but no fever. I don't think she will live a full life. This is the worst thing as a mother I have ever had to witness. I feel so helpless. I wish I could take it away from her.
@@2weeksago642was the supplement high caffeine? it may be that it started noticeable symptoms. do you have EDS/ have they accessed you for the usual causes of AD? Have you investigated other connective tissue disorders? I have no known history of EDS but a family history of Marfan's syndrome- my mother- but it's hardly researched so I usually end up looking at research for EDS. I have dealt with very ignorant doctors so I have yet to be diagnosed with it or a similar condition that it has been mistaken for. I can do both the wrist sign and the thumb sign but literally the doctor refused to look at me doing the latter. 🙄 I get dizzy and faint, have GAD, IC, gastrointestinal issues, the latter as far back as I can remember but getting worse and plateauing now I am 27, and my little sister has had pooling in her legs and high blood pressure. She also was not as premature as me and is 6'2". Being very tall is a very good indicator for these kind of conditions/ much taller than your family (our mother is 5'10") pretty tall for someone with scoliosis if you need a direction to look in. I have to eat high salt and she has to limit. What a strange life we live.
@@Star5dg I don't have dislocations I didn't realise I had hypomobile knees till I twisted it still hurts 12 month later.ive got thumbs little finger flat feet hypomobile knees unsure if it's in the back I can put my hands in praying position up my back.you may have another without realising it's all linked see j Eccles hypomobility
@@johnQTNZ if it doesn't feel good go with your gut. I have seen graphs that shows percentage of people like us have gotten worse or had a flair up afterwards. My heart tells me no.
I have automatic dysfunction now BECAUSE of the vaccine. I can only imagine what it would do to someone who already had autonomic dysfunction. I’ve been healthy my entire life. Now I’m a mess.
I need help i am passing out or as they call it seizing multiple times a night. Tachycardia etc etc. have broken my arm in half from falling and the medi-cal system is failing me. I’m pretty sure its autonomic neuropathy based on my own research and an ER doctors opinion matched mine as well. Someone please help me to find a specialist? I’m begging.
Oh my! So glad I stumbled across this. I’ve been passing out every month or 1 to 2 months for 2 years (with black eyes, fractured ribs, fractured shoulder, etc). My Vitamin B12 has been elevated for a few years. Never an answer from any of my doctors. The only thing I found was that it could indicate cancer. 2-1/2 years ago I was diagnosed with triple negative based cancer. Rare, very invasive & extensive. Most cancers are measured in mm, mine was 7.5 cm X 2.5 cm X 3.0 cm. That’s huge! I had chemo first, then bilateral mastectomy with 9 lymph nodes removed, then radiation. I’m cancer free but I’ve nerver felt “well”. I had a history of paroxysmal atrial fibrillation which recurred after then these syncope (fainting) episodes started but seem unrelated. I was put on Midodrine only to have my BP go to 224/120. My BP still fluctuates significantly but not as bad as it had. I ended up retiring at 65 instead of 68 as I intended. There are some days I just can’t get out of bed. I’m cold all of the time (not sure if that’s related). I’ve had tinnitus for a few years & sometimes I thing I’m going to go crazy! Couple of months ago I found the diagnosis of autonomic dysfunction in my clinic records. I have no idea which doctor put it in but it was never explained to me. I found a journal article from nih about causes of it & exposure to toxins, like chemotherapy was included. I worked in Cardiology for many years as a nurse then nurse practitioner. Tilt Table tests have not been done here for over 20 years. They believe if you have symptoms of orthostatic hypotension to treat that rather then get an unnecessary test.
I had gullian barre syndrome without proper treatment, since then my autonomic nerves have been going haywire and I don‘t know what to do. I would even pay for a course of ivig out of pocket. I have trouble swallowing, breathing and have to cough alot of times breathing deeply, my lungs are those of a 50 year old (Im 24 years old) I have extreme trouble sleeping and myoclonus and twitching. My neck hurts (probably vagus or phrenic nerve) Help me! If anyone has any suggestions how to cure this let me know
I sympathize, a close friend has this. I would suggest getting a diagnosis at least then you are likely to be treated. My friend was in Costa Rica where he must have been infected by a mosquito bite. He was diagnosed at a private clinic there.
I am a retired GP,my friend had this after hospital admission.She was diagnosed as panic attack.at that point I accepted the diagnosis.I gave her TENS on 2 leg acupuncture points,and on Shen men and pinna points on the left ear.At the same time I gave her eye movement desensitisation reprosessing discussing her worries stresses and panic.She is remarkably better after two sessions.I will give her a third on Sunday.I believe I stimulated the parasympathetic nervous system and the endocannabinoid system,which damps down the immune hyperactivity.I believe the cause was spike protein production after 2 COVID-19 mRNA injections.
@@martynphipps9117 Could you provide more information on the recovery of patient? There are so many who are suffering from autonomic dysfunction after the vax and would be good if you could put up a video or post explaining the treatments that you did. It will help a lot of people.
Uk Doctors have a built in BMI for high BP.. ... Why in A&E I was told by a Doctor that some very fit people have a low bpm as I can drop sub 50 why on Doxazosin,, yep Anxiety hell but I need to do something a about my soft tissue being attacked so I asked to be put on it........Then he told me If I have been told by my gp and cardiology that my BMI is probably my problem. ps Cardiology Doctor has not seen me only sent a letter to my gp.lol ... My daily BP is 180! If i pass 200 is like I'm O.Ding BP It can hit 240! Very bad headaches and pain around the eye to wisdom tooth.top body sweats..... I have told them. I had a back injury L5 s1 back is num and hot all the time but still they are blind as people with AD need to be T8! Or higher.. Ps my Dowel is the trigger!!! for part of it.. but Its like my fight or flight is on all the time ..I been in hell for 13? Years.. NHS is a joke.. I'm think and I can work it out....lots more to it like if I put pressure on my vagus my bp will jump from 180! to 200!
@@Truerealism747 yes and nothing! The adrenaline is!! Being triggered probably from a pian that I?? Do not feel and the AD? Is the flag to say there's a problem..Its probably my disc boulging and hitting?? Priching ??the vagus nerve then my dowel pushes against it that gives me AD boosting ?? A double punch?
![Felix "Unfair" | [Stray Kids : SKZ-PLAYER]](http://i.ytimg.com/vi/Oswujxm2Ag0/mqdefault.jpg)
So validating when Dr Hakim is talking about patients knowing the difference between anxiety and when their autonomic system is going wrong, I experience that frequently and have also experienced it with anaphylaxis (due to my MCAS) when doctors thought I was "just" having a panic attack but was actually having my first big allergic reaction.
AMEN! I've been told so many times my symptoms are stress and anxiety.. while my heart races and my BP shoots up and down, passing out when I stand up, broken bones, 2 concussions. One ER doc stood in the doorway of the cubicle and said I was fine, I could go ...oh, and take my own EKG leads off.
People say ‘ why are you anxious ?’
Well I am not but my fight / flight system is extremely faulty , over reactive SO I can be so anxious going through a grocery checkout if it is busy , or walking through food court with children , to much noise , or if running late for anything
YET , I can do a random public talk without an extra heartbeat and feel calm and connected not confused
Do you get what I am saying ? Also I can appear racy like I I. Have had speed , or meth ( ICE )
Racy or no motivation
Why can't doctors HEAR us? Why won't they LISTEN? We don't have diplomas. Sorry dear, but I am the expert of how I feel.
I just got diagnosed with POTS! This video was helpful and very empathetic and lovely! Stand up, Dr. Hakim!
Thank you so much! I am Hypermobile type with terrible Dysautonomic symptoms and this is the best explanation I have seen so far, especially for others who don't quite understand the situations I deal with daily.
Sounds like this Doctor could educate many many GP’s who medically gaslight their patients. I’ve had a journey from hell for nearly 4 years due to undereducated lazy GP’s. I’m now with an autonomic function team. I used to be like an athlete now I nearly faint after a short walk!
I'm on year 3 now of feeling like this!! It drives me crazy because I love training yet I can't push hard at all. Still trying to find the proper diagnosis with a GP. I've had countless tests done but none have looked at this.
Same here is there a cure ??
@@josephineapple7883 not a direct cure. Various treatments and trials can possibly help. Graded exercise, supplements etc.
@@pumpedhealthfitness210 it took me 4 years to come across people who looked in to this. I’m very unwell but I now know what it is. Life changing.
Just happened to me at an actual hospital. Twice.
This is great, a lot of doctors don’t understand when I’m explaining my EDS, autonomic dysfunction, and P.O.T.S
I have NMH…. So frustrating but basically try to “warn” my coworkers (nurse) friends, family what may possibly happen( I have warnings sometimes/ sometimes not). It seems it has touched just about every bodily function others take for granted. I have accepted that this is just how I am. Interestingly enough, with reading and lectures such as this, apparently there’s a correlation of childhood trauma experience/
response and autonomic disorders(amongst other things).
I’ve lived much of my life wondering why I am the way I am. So fortunate to see these disorders being discussed & the enlightenment it has provided to caregivers and general public.
I’m living a full life, self aware, but just deal with it daily as best I can which is all anyone can do.
Do you have fybromyalgia symptoms do you have eds or hsd
Dr hakim is an amazing doctor.
I have a version of this that causes my blood pressure to go from deadly Hypertensive crisis during the day to dropping so low at night randomly that I go into shock. It has destroyed my kidneys and brain. I also have RSD, Tachycardia, have had multiple strokes, gastroparesis, etc. One thing that I have had for a long time had this weird sleep disorder thing that I have never felt comfortable telling a doctor because I thought they would think I was crazy. After watching this I finally think I understand. If I get overtired from overdoing it during the day and I try to sleep that night, not only does my bp and heart rate drop so low (like Heart rate 34 and bp of 60/40) but often when I try to fall asleep I will get this sensation of falling but then I get this weird shocking sensation that is painful all over my body that seems like something is literally shocking me back awake. Because of this I don't get proper sleep. During a sleep study, my neurologist said it showed that my own brain was shocking me back awake over and over again so I was never going into proper sleep. Has anyone else experienced this? My current doctors have no clue how to treat me and seem to have given up. I wish there was a legit doctor near me in NY that was knowledgeable like this man.
Yes, I think this wakes me up, abs it's upsetting, I wake up upset, not just in pain.
@@trulifrea8073 , I'm so sorry you are going through this. It is upsetting and stressful. The number one thing that has helped me is finding hope in Jesus. I should have been dead so many times but it is by the grace of God that I am still here. I will pray for you right now. Feel better and God bless you.
@@squishywatchbee3010 Thank you for your lovingkindness, let's all pray the Prayer to OUR FATHER in heaven hallowed us His NAME HAELUYAH ❤
@@trulifrea8073 , Amen!
I do this too 😔 is exhausting to try and sleep
I described some of these symptoms to my cardiologist and he said "uh huh".
I’ve been suffering for over a year to the point of relocating south . Not only is my immune and B12 high but I have a swollen esophagus , high level of inflammation to the point of chest burning along with pain , and symptoms above . I would run to er and hospitalized 5 times last year. Still no diagnosis or treatment plan yet . My bp will rise to 240/120 easy and drop 110/65 etc . There is no in between for me at all . This sounds promising to me .
Fits me perfectly. 5 er Visits and no diagnosis either I have all of ehat you and this doc explains. They say it's anxiety and it's way more and it causes anxiety.
I see SSRI (serotonin reuptake inhibitors) on a list in this vid, but what's helped me with spine and rib pain and mobility is an SNRI prescribed for fibromyalgia symptoms, Duloxetine specifically, increasing my norepinephrine. I need to lay down several times a day, and Kineseo Tape on my ankles helps with pain, as well as blood and lymph flow. Compression socks are too painful, but I may try them one more time in a very light compression.
thank you for reminding me I have rib pain sometimes and to mention it to my doctor
Just started on duloxetine today actually. Is it still working for you?
Yes, four or so years after starting it, the SNRI duloxetine still helps with my chronic pain. Facial Counterstrain physical therapy has been helpful, too, when other types of PT and massage have just made things worse. And treating my severe PMS with a daily progesterone-only pill has also helped me. The progesterone pill is also a treatment option for folks with endometriosis (when uterus lining cells grow on the outside of other organs and shed during menstruation). Good luck! 🍀🥄🦓🥄🥄🥄🥄
Had braincancer and elevated blood pressure, thus taking bisoprolol since age 12, and im having poop-syncope since then, blacking out on the toilet. Happened only some 20 times since then, but finally I saw this video and go to the doctor again.
I have Vascular EDS. I have 2 Brain Aneurysms and they found one behind my Heart. I was told the walls are very thin. I also have Heart Disease. I have Panic Attacks in my sleep and throughout the day. I have 3 Strokes. I pass out, like someone flipped a switch. I hate to say this but I have Everything you put up there. My stomach bloats so bad I look very pregnant. My legs become so deformed from water retention ( if you press on my lower legs with a finger or thumb it leaves a big dent that doesn’t go away for at least an hour) from the Heart Disease and High Blood Pressure p. Physical therapy didn’t help me. They told me sorry. Where do I go I can’t walk anymore, I’m in a wheelchair. I also have Severe Hypermobility and Extreme Fatigue. Skin Tearing, My hair is now falling out in clumps. I’m sorry I wrote so much, funny, there is so so much more. I am so scared. I had Brain Surgery on one of my Aneurysms, the other they don’t want to touch. The one behind my heart, the Cardiologist basically told me I was going to die, there is nothing we can do about that one either. I’m defeated and lonely and feel so hopeless. I have no one, friends were afraid watching what is happening to me and slowly drifted away, especially when they saw all the braces I have to wear. Doctors laugh at me, make fun of me.I’m so sorry. I also have had a Retnal Detachment and am left with double vision and Macular problems
It might be a help to talk with others. We have support groups for people with vascular EDS, information is available www.ehlers-danlos.com/virtual-support/ - and perhaps the helpline can assist in finding answers, www.ehlers-danlos.com/eds-helpline/
You are not alone. I've also lost a lot of friends for the same reasons 💙
So sorry you’re suffering, I have most of the same symptoms and am bedridden. You’re so right about how all the friends leave, even family. It’s so lonely that’s the worst. I haven’t left my house since Christmas. Sending you hugs and gratitude 🙏
Hugs and support sent your way! There are people caring and praying for you!
God bless you! Stay strong you are here for a reason! I got a service dog for my many eds based conditions. He alerts to my blood surgar highs and lows, helps with support when i get shakey, and even alerts me before my heart starts racing and i faint due to the POTS so i can sit down, he is always there for me and it really helps me feel not so alone and afraid when i have an issue by my self, dogs are angels 😇
I'm doomed then as I have at least 5 diagnosed conditions that each can cause fatigue... It's no wonder that my GP said that she doesn't think that I will ever be free of fatigue. I was asked recently by an assessor why I've not been referred to a CF clinic... My response was I didn't know that they existed but more importantly, given my medical history, they probably wouldn't be able to do all that much as the root of the problem wouldn't be all that clear cut. Depressing.
Have you thought about seeing a functional medicine doctor?
@@xLovebirdx - yes, I have thought about a functional medicine doctor but I'm not sure if they could help me either. They seem really expensive here in the UK and my faith is waning in there being anyone who can/could help. You see, there's so many things going on and one of the main conditions requires me to ever more be in an iron deficient state. I'm viewed as complex... 🙄
Have a look at Dr schubiner and Dr tealabaum d ribbose helps little with fatigue
Thank u🙏🏻🙏🏻🙏🏻 I get no help in Sweden about my sickness.
I have so many sickness the doc give me here is crazy.
I have so many bad disk in my neck and back. diaper every night because I do not have a feeling in the groin due to so many injuries in the back (Spondylosis, spondilites, sciatica lumbago, disc herniation L4 and L5 plus modic type 2) I have disc herniation c4-c6 . due to my disk that crashed (c4) I got permanent nerve damage in my whole body, that pain is the worst I have been and live with. get loss of sensation in the face in arms
I have chronic Lyme disease. but receives no treatment in Sweden. I have too high white platelets but the doctors just say we do not know why.
I have around 15 diagnos
I even have bad fick sickness.
My sleep is around 2-4 per night this make me really more sick. When I wake up I have sooo mutch pain🤔
Hey everyone, there is a playlist in the video description ⬆️
I’m always hearing of POTS or orthostatic hypotension. I think I have a dysautonomia that is actually fatal and I think I’m the only person in the world with this type of dysautonomia. I think I have pure autonomic failure or something along those lines because I am getting worse and not recovering.
Praying for you.
@HistoryBuff It’s been about 7 months since my original comment and I still stand by it. I have not worsened but because I have been really careful with what I put inside of my body. I believe my condition can become fatal in a matter of minutes by ingesting the wrong thing. I didn’t mention this in my original comment, but I developed dysautonomia overnight two years ago, from a preworkout supplement I had purchased online. Hence why I believe I have a rare type of dysautonomia.
Same here everyday I get worse. I feel static electricity everywhere randomly in my body. Certain muscles go numb with zero warning and sharp stabbing pains from top of head to bottom of feet. My body has turned into my own living Hell
My daughter has EDS. She is getting worse everyday. She is 21 and this started when she was 14. She has major automatic disfunction. She also gets electric shocks through her chest, arms and head. Her body is burning up but no fever. I don't think she will live a full life. This is the worst thing as a mother I have ever had to witness. I feel so helpless. I wish I could take it away from her.
@@2weeksago642was the supplement high caffeine? it may be that it started noticeable symptoms. do you have EDS/ have they accessed you for the usual causes of AD?
Have you investigated other connective tissue disorders? I have no known history of EDS but a family history of Marfan's syndrome- my mother- but it's hardly researched so I usually end up looking at research for EDS. I have dealt with very ignorant doctors so I have yet to be diagnosed with it or a similar condition that it has been mistaken for. I can do both the wrist sign and the thumb sign but literally the doctor refused to look at me doing the latter. 🙄
I get dizzy and faint, have GAD, IC, gastrointestinal issues, the latter as far back as I can remember but getting worse and plateauing now I am 27, and my little sister has had pooling in her legs and high blood pressure.
She also was not as premature as me and is 6'2". Being very tall is a very good indicator for these kind of conditions/ much taller than your family (our mother is 5'10") pretty tall for someone with scoliosis if you need a direction to look in.
I have to eat high salt and she has to limit. What a strange life we live.
And how to tell fybro or eds
It ought to be a felony in the USA for any doctor or practitioner, etcetera, to prescribe a drug that causes autonomic dysfunction!
is he saying chronic lyme disease exists? My illness started after tick bite and sparked my eds diagnoses 4 years later
Didn't you have hypomobility before
@@Truerealism747 I only have hypermobile fingers. My other joints are normal with no discolations or subluxations
@@Star5dg I don't have dislocations I didn't realise I had hypomobile knees till I twisted it still hurts 12 month later.ive got thumbs little finger flat feet hypomobile knees unsure if it's in the back I can put my hands in praying position up my back.you may have another without realising it's all linked see j Eccles hypomobility
How are people with autonomic dysfunction handling the vaccine. ? I have so many concerns
Same. Very worried about getting vaccine!
@@johnQTNZ if it doesn't feel good go with your gut. I have seen graphs that shows percentage of people like us have gotten worse or had a flair up afterwards. My heart tells me no.
I have automatic dysfunction now BECAUSE of the vaccine. I can only imagine what it would do to someone who already had autonomic dysfunction. I’ve been healthy my entire life. Now I’m a mess.
@@CristyTravels I'm sry you were deceived. I hope you a speedy recovery.
Considering the vaccine is nearly irrelevant now I'm glad I didn't get it. Hope you are well ☺️
nicely presented !
Stay tune ...
why autonomic dysfunction occur in these patients??
I need help i am passing out or as they call it seizing multiple times a night. Tachycardia etc etc. have broken my arm in half from falling and the medi-cal system is failing me. I’m pretty sure its autonomic neuropathy based on my own research and an ER doctors opinion matched mine as well. Someone please help me to find a specialist? I’m begging.
Hi Matthew, please do contact our helpline team who will offer their advice and support: www.ehlers-danlos.com/eds-helpline/
@@TheEhlersDanlosSociety ....how is all this managed in the covid era??
Oh my! So glad I stumbled across this. I’ve been passing out every month or 1 to 2 months for 2 years (with black eyes, fractured ribs, fractured shoulder, etc). My Vitamin B12 has been elevated for a few years. Never an answer from any of my doctors. The only thing I found was that it could indicate cancer. 2-1/2 years ago I was diagnosed with triple negative based cancer. Rare, very invasive & extensive. Most cancers are measured in mm, mine was 7.5 cm X 2.5 cm X 3.0 cm. That’s huge! I had chemo first, then bilateral mastectomy with 9 lymph nodes removed, then radiation. I’m cancer free but I’ve nerver felt “well”. I had a history of paroxysmal atrial fibrillation which recurred after then these syncope (fainting) episodes started but seem unrelated. I was put on Midodrine only to have my BP go to 224/120. My BP still fluctuates significantly but not as bad as it had. I ended up retiring at 65 instead of 68 as I intended. There are some days I just can’t get out of bed. I’m cold all of the time (not sure if that’s related). I’ve had tinnitus for a few years & sometimes I thing I’m going to go crazy! Couple of months ago I found the diagnosis of autonomic dysfunction in my clinic records. I have no idea which doctor put it in but it was never explained to me. I found a journal article from nih about causes of it & exposure to toxins, like chemotherapy was included. I worked in Cardiology for many years as a nurse then nurse practitioner. Tilt Table tests have not been done here for over 20 years. They believe if you have symptoms of orthostatic hypotension to treat that rather then get an unnecessary test.
How are you now
I had gullian barre syndrome without proper treatment, since then my autonomic nerves have been going haywire and I don‘t know what to do. I would even pay for a course of ivig out of pocket. I have trouble swallowing, breathing and have to cough alot of times breathing deeply, my lungs are those of a 50 year old (Im 24 years old) I have extreme trouble sleeping and myoclonus and twitching. My neck hurts (probably vagus or phrenic nerve) Help me! If anyone has any suggestions how to cure this let me know
I sympathize, a close friend has this. I would suggest getting a diagnosis at least then you are likely to be treated. My friend was in Costa Rica where he must have been infected by a mosquito bite. He was diagnosed at a private clinic there.
But.most people with disabilities eds have CFS or fybro not confusing at all
Can it be cure
I think it can only be managed
I am a retired GP,my friend had this after hospital admission.She was diagnosed as panic attack.at that point I accepted the diagnosis.I gave her TENS on 2 leg acupuncture points,and on Shen men and pinna points on the left ear.At the same time I gave her eye movement desensitisation reprosessing discussing her worries stresses and panic.She is remarkably better after two sessions.I will give her a third on Sunday.I believe I stimulated the parasympathetic nervous system and the endocannabinoid system,which damps down the immune hyperactivity.I believe the cause was spike protein production after 2 COVID-19 mRNA injections.
@@martynphipps9117 Could you provide more information on the recovery of patient? There are so many who are suffering from autonomic dysfunction after the vax and would be good if you could put up a video or post explaining the treatments that you did. It will help a lot of people.
Can you tell me where I can find this type of procedure? What medical clinic should I be searching up and for what therapy is this called?
@@martynphipps9117 I got it after covid no v A x. Still suffer 2 years. Thought it was ptsd. Now know it's this. MD all claim anxiety.
Very interesting
Uk Doctors have a built in BMI for high BP.. ... Why in A&E I was told by a Doctor that some very fit people have a low bpm as I can drop sub 50 why on Doxazosin,, yep Anxiety hell but I need to do something a about my soft tissue being attacked so I asked to be put on it........Then he told me If I have been told by my gp and cardiology that my BMI is probably my problem. ps Cardiology Doctor has not seen me only sent a letter to my gp.lol ... My daily BP is 180! If i pass 200 is like I'm O.Ding BP It can hit 240! Very bad headaches and pain around the eye to wisdom tooth.top body sweats..... I have told them. I had a back injury L5 s1 back is num and hot all the time but still they are blind as people with AD need to be T8! Or higher.. Ps my Dowel is the trigger!!! for part of it.. but Its like my fight or flight is on all the time ..I been in hell for 13? Years.. NHS is a joke.. I'm think and I can work it out....lots more to it like if I put pressure on my vagus my bp will jump from 180! to 200!
What are your tissue problems pain for me everyday
@@Truerealism747 before taking Doxazosin It was my lumber. Iner Ears and the sphincter that in turn makes it hard to go to toilet and so triggers AD?
@@Thevwmethod has your cortisol adrenalin and thyroid been check by endro.tbis my next thing to do
@@Truerealism747 yes and nothing! The adrenaline is!! Being triggered probably from a pian that I?? Do not feel and the AD? Is the flag to say there's a problem..Its probably my disc boulging and hitting?? Priching ??the vagus nerve then my dowel pushes against it that gives me AD boosting ?? A double punch?
@@Thevwmethod nightmare have you looked into a TMS Dr for subconscious.mi d I do meditation hard work.are you better than you were
Sounds like someone in the background has covid
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