What an amazing physician and scientist! If only we could have the old school doctors back, who listens, touches, and don't judge, Western medicine wouldn't be this growing failure and battle of insurance. I am a scientist and a healthcare provider and the more I try to save myself and my patients, the more disconnected from Western medicine I feel, unless I hear or meet someone like Dr. Grubb. Don't give up and advocate for yourself. Get second opinion and use all of your insurance coverage if you are lucky enough to get one.
I have listen to this talk 15 times and feel better each time just hearing someone actually explaining what’s happening. Thank you Dr. Grubb for everything you have done to understand this and for pushing research forward. Wish you where here in CO, would love to have a Dr. like you.
I live in CO too and it is like an EDS doctor desert. Half of them don't even know what EDS is, and the rheumatologists don't want to see anyone with EDS. I have flown out to CA twice in 10yrs to have major pelvic/lower back surgery related to my EDS that NO Colorado docs could perform for me.
@@jercasgav You could try Center for Multisystem Disease in Denver. I found Dr. Jill Schofield to be pretty squared away. It’s out of pocket and pricy, but she is good at what she does.
Dr Grubb..my husband just found your video this minute. We watched and I cried..I've been sick for YEARS...NO HELP...living in Atlanta now...after a stay at the diamond headache clinic for dhe infusuon to stop migraine cycle..come home..get shingles...blah blah..end up needing a cardiologist who said YOU NEVER SHOULD HAVE GOTTEN SHINGLES (again..had it in my 30's..I'm 65 now) I believe you have an autonomic disorder..waited 6 months to see the cardiologist he recommended who specializes in DYSAUTONOMIA...saw him and I have waited over 2 months for my tilt table test which is August 17 to determine which type I have and what to do about it...I've been debilitated for years..specifically the past year now since shingles one year ago..I have not left the house and do not dress..I'm dizzy ALL THE TIME..migraines are a constant but not like before..fatigue..blurred vision..numbness in extremeties..cold hands and feet..prickly pounds and needs in feet..nausea..and now the heart palpitations are back and the anxiety was controlled but all of a sudden not so much..I'm on a low dose of klonopin..wish you were my doc...the one I see Dr Howard snapper is the only autonomic disorder specialist in the state of Georgia!!! I'm so afraid there's no help for me..I live in my pjs age this past week or more need to balance 2 pair of sunglass on my face to watch TV IF I'M NOT TOO DIZZY...AND I CAN FOCUS. I cry a lot alot..I've doc or me in a psych hospital because he said it was a psychological issue which meant he had no clue..I was there for 4 hours when the doc said we can't help you..you're having panic attacks..well I do have those also..I'm so scared there's nobody out there to help...and I don't want to be the theologocal specimen for my God..you're the only person who had made sense to me and I don't expect an answer...I love in a prison..and while prayer is my only respite...I also know he does not have to heal me..I hope you read my comment.I'm relieved to know I am not crazy but fear this is all I'm going to be until my body gives out..or my broken heart or God only knows what...with respect..Janet Jones
I have nOH..it's awful...I'm on midodrine now for 10 days..side effects are pretty awful..but I don't think there's anything else...my bp drops when I get up from laying and sitting but at night in bed my bp hours
Ugh..my message sent before I finished..my bp rises when I lay down or go to bed at night..so that's the difference between POTS and nOH..they both are TERRIBLE...my only friends are you abs pretty reckless does..I pray for you both...I hope to hear from you again...God bless you..janet jones
Great talk. We just need more doctors, who specialize in POTS and Dysautonomia. In Toronto, Ontario, the wait to see a specialist is many many years long....waiting more than 5 years is tough, so this talk really helped me understand my symptoms.
In B.C. Canada...it's NADA...my daughter is 18 and basically lives life from her bed. She is quite unwell and now in all their wisdom, she is on an SNRI as the SSRI didn't do much and she doesn't sleep so is on yet another anti-depressant to sleep. She has had this from very young and no doctor has helped us. They tested at Children's Hospital (our best) for Narcolepsy as she was passing out at school, her lips turning blue even...we told them that, but narcolepsy? what? and when that wasn't it...straight to telling her it was somatic in nature. She dropped out of school, and was a straight A student. We are beside ourselves. I am ready to fly her to Ohio. She has all EDS symptoms, POTS but the EDS we think she has very serious issues internally, she has had trouble urinating and bowel forever...went to emerg this year, because she was so backed up...she is always sweating, her palms sweaty...her heart HURTS and beats too fast, and skips...her ribs HURT she says...she is scared and yes, NOW? Depressed but wants help. I will not stop until we get help. (I typed this all fast while listening...so forgive me)
update. my daughter attempted suicide on watch/assessment at the hospital just THIS week. She is crying out. I tried to keep her safe, but we were asleep. She stands slowly from her hospital bed and her resting heart rate jumps to 140, laying down 117-120 and they think it's "somatic" because of mental illness. THE BIOLOGICAL ILLNESS CAME FIRST. They are not hearing me. Blue lipped fainting at 7 yrs old!! Depressed from these many years living from bed and being left out of life! I am now terrified.
Woohoo we've all been chosen. Joy. (EDS, hyperPOTS, MCAS trifecta) This guy is a good speaker. And such a science geek. All her vitals went to zero...it was so cool. Such a geeky thing to say. 😍
Thankyou. Great explanation. I have Pots after a viral illness, take ivabridine which lowers the rate. Never ever felt dizzy. Bp changes. I have levido retucularis too. Also have joint hypermobility and autoimmune disease, landing on fibromyalgia. Complex.
True, but this talk was given at an EDS conference, so maybe that’s why mast cell wasn’t Dr. Grubb’s focus. The talk by Dr. Peter Vadas will address mast cell.
Well, I have a question. I had positive tilt table for pots syndrome but I have super high BP, not low. I thought i have hyperadnreal type pots, but with is the difference between hyperadrenal pots and baroreflex dysfunction?
I get the high blood pressure from hyperadrenergic POTS, although it can sometimes crash. Medications have fixed this and stabilized my blood pressure, though. If your blood pressure is high, that gives you a lot more options for treating it.
Long story short I am a 21 year old female and March 24 2019 i had a healthy baby boy. 1 week and 1 day later ( April 1 2019) I collapsed at home. I was moved from 10 different hospitals and rehab centers for almost 7 weeks I never came home during that time. Fast forward to last Monday so about 6 months later I get tilt table results back saying i have a severe case of POTS. Heres my symptoms I can't sit up and i cant stand my heart rate spikes. I can go into seizors like episodes sometimes I hear you sometimes I don't. I get migraines but also my head just hurts. I tell my mom where it hurts on my head and sometimes she can feel a bump or an indent. Sometimes when I'm unconscious my mom says I hit where it hurts or pulls my hair out. I remember having pain and when I wake up I say I hurt here and she says she already knows cause its where I was hitting. I had a 3 day EEG recently but these episodes weren't caught on it I had them the day after and for about a week after. I didn't have my normal surroundings my mom thinks. Emotions can trigger it and so can my heat flashes. If I am too hot I go in them. i made it on tilt table for 16 min the most I stood in 6months. I have been bed bound since I collapsed I am home now but use a bed pan and eat laying down I don't sit up either so i never leave the bed. Moving my arm can make my heart spike laying down too. I also have what they are calling real and psychiatric seizors saying I go back and forth without coming out but the EEGs are coming back normal sometimes and abnormal others so they put me on meds anyway. We found out I have a pitoritory adonoma but its 4 by 4 mm so they said it too small to do anything so it not the problem. I am also trying to get winged off hydrocortisone because since I collapsed I wasnt making any cortisol. So now they wanna see if my body has started making any yet. I have to make an appointment for that blood work first though. I have had many tests but no answers. The Electro heart dr wants to put me back on midadrin for the POTS. I took it in the hospital and would still faint on it. Also it would make my heart feel weird it would go in the 40s and jolt me awake literally while i was trying to sleep. I don't know what to do. Its been 6 months i want answers. I have a new baby to take care of my mom helps me and him but this is too much. I can't go outside at all and I always walked everywhere and never drove. I was very independent this has been very hard on me emotionally and physically. Therapist say I'm ok i just need answers and to be cured. I don't know if I should do what the electro heart dr said with restarting the medicine and getting right into therapy and walking again cause when I did that in the rehab I would end up right back in the ER. I have neurologist who did a nerve conduction but everything looked great. I want someone like this DR to look at my files and help me. I need to get back on with my life. I am getting attraphy and afraid I won't be able to walk again if it take much longer. I live in the USA is Las Vegas Nevada. If anyone had advice or can help me with information please let me know.
My dads life was saved by a women heart doctor, but this was in the 80s, not sure she would still be at the hospital there in Vegas. No one in Clinton or Little Rock Arkansas knew what he had. My parents went to Las Vegas, she listened and she knew, rushed him into emergency. I don’t remember her name.
I'm sorry to hear that you are going through this. This is pretty miserable. I know that it might sound trite but you're not alone. I have Dysautonomia, Hypermobile Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Disorder, Multiple Chemical Sensitivities, Degenerative Disk Disease, Arthritis Fibromyalgia, etc. I say all of this because I wonder if there is a similar reason for your symptoms. 1) I know that your main complaint is POTS, but I'm wondering if it is attached to Ehlers Danlos Syndrome (since it nearly always comes with it.) So I'm wondering if you are you excessively bendy or flexible? Have you always had a spot or several spots that are bendy? I know he talked about EDS briefly, but not nearly well enough. 2) It wasn't until I figured out that I am flexible and have POTS that I found my Mast Cell issue. Come to find out that my immune system was really far off the mark because of my dysautonomia. I had huge problems with heat, sunlight and I was fainting constantly (though keep in mind that the symptoms are different for each of us with MCAD/MCAS and Dysautonomia.) Luckily, when I started fixing it with an H2 inhibitor, (which in my case was double doses of Zantac and Zyrtec together twice a day,) I immediately felt a bit better. I could take a walk in the sun or take a hot bath without issues. When I combined it with compression garments, Liquid IV/Gatorade, and salty foods as tools that are available to me, I began to get gradually better. What really mare I feel better is pool therapy and in times of emergency a ton of IV fluids. I should also tell you that the best part of all this is that you aren't alone! There are a ton of us (especially in POTS and Dysautonomia groups on Facebook and TH-cam who are always available. If you want help hooking up with groups, finding literature or just want to talk, we're here for you. I'm here any time that you want to talk. Even from the floor!
im a pale Male Asian. and i have pots. i dont have hyper joints but a lot more flexible than your average person and easily develop stretch marks . yes i can put my legs at the back of my head, i would not consider my leg to be acrocyanotic but it does get more pale upon standing.
That could still be EDS or HSD. I should see a Rheumatologist and/or a Geneticist. There are 13 types of EDS as well as a dozen other similar issues, so it can be hard to distinguish. If I were you I would start with a Geneticist because many Doctors who are supposed to understand EDS, Marfans, HSD really don't among Rheumatologists. Some of these conditions are dangerous, so I wouldn't risk being misdiagnosed. I would also arm myself with information if I were you. I'd start by watching this series (th-cam.com/video/4qOvHeUgwmQ/w-d-xo.html)and maybe checking into the EDS Society's free Webinars. Let me know if you want to talk or have more questions!
Yes, you can. Not according to the doctors, but you sure can have it. If you want to fail a Tilt test, take it in the morning, or eat a meal before the test and you will fail.
@@JohnBedson I don't think that's necessarily true... not sure if you're a Dr or not. but I'll reply in case anyone else sees my comment and can relate. I visited an POTs specialist at the university of michigan recently... if you're experiencing POTS like episodes while laying down like me, it may be that you are experiencing adrenaline dumps that are common with hyperadrenergic POTS and Mast Cell Activation Syndrome.
@@KennM12 I 100% agree. But adrenaline (and catecholamine) surges are part of your damaged autonomic nervous system. They should not be doing that. Do your catecholamine surges and symptoms come at the exact same time of day? Are they worse in the early mornings and gradually fade during the day? What symptoms do you get when lying down (supine).
@@JohnBedson they are not worse at a certain time of day and they do not fade as the day goes on. where are you suggesting this damage is coming from, and is it irreversible? my symptoms are kind of hard to describe. but i get a very sudden and extreme sense of lightheadedness, weakness, warmth, tingling, and increased heart rate. it feels like someone stuck my finger in an electrical socket and my whole body is lit up. feels like i'm dying
Ms.grant...I've been misdiagnosed for 5 years..waiting for a tilt table test August 17..waited 6 months fire the doctor after my cardiologist said I think you have an autonomic disorder...I've been in my pjs for the last year..never leaving my house..been constantly dizzy..can't read and often can't watch tv..can't focus our is too bright..I will pray you find help. Blessings to you Janet Jones
So to everyone here. All of these things can be eliminated by change in diet. I had the same symptoms for years until I cut out sugar and gluten and dairy from my diet. I am almost fine now. Please start eating more fruits and veggies. Also fast in between. Worked for me and it could possibley work work for you too.
My POTS is caused by hypermobile type Ehlers Danlos syndrome, which is a genetic disorder affecting all of the collagen in my body - including the blood vessels and heart. Unfortunately, changing my diet can't undo the genetic mutation or replace all of the defective collagen in my body.
I'm trying to decide if I'm glad we're messed up enough to hold Dr. Grubb's attention. Either way I'm delighted we have him.
What an amazing physician and scientist! If only we could have the old school doctors back, who listens, touches, and don't judge, Western medicine wouldn't be this growing failure and battle of insurance. I am a scientist and a healthcare provider and the more I try to save myself and my patients, the more disconnected from Western medicine I feel, unless I hear or meet someone like Dr. Grubb. Don't give up and advocate for yourself. Get second opinion and use all of your insurance coverage if you are lucky enough to get one.
I have listen to this talk 15 times and feel better each time just hearing someone actually explaining what’s happening. Thank you Dr. Grubb for everything you have done to understand this and for pushing research forward. Wish you where here in CO, would love to have a Dr. like you.
I live in CO too and it is like an EDS doctor desert. Half of them don't even know what EDS is, and the rheumatologists don't want to see anyone with EDS. I have flown out to CA twice in 10yrs to have major pelvic/lower back surgery related to my EDS that NO Colorado docs could perform for me.
@@jercasgav You could try Center for Multisystem Disease in Denver. I found Dr. Jill Schofield to be pretty squared away. It’s out of pocket and pricy, but she is good at what she does.
Dr Grubb..my husband just found your video this minute. We watched and I cried..I've been sick for YEARS...NO HELP...living in Atlanta now...after a stay at the diamond headache clinic for dhe infusuon to stop migraine cycle..come home..get shingles...blah blah..end up needing a cardiologist who said YOU NEVER SHOULD HAVE GOTTEN SHINGLES (again..had it in my 30's..I'm 65 now) I believe you have an autonomic disorder..waited 6 months to see the cardiologist he recommended who specializes in DYSAUTONOMIA...saw him and I have waited over 2 months for my tilt table test which is August 17 to determine which type I have and what to do about it...I've been debilitated for years..specifically the past year now since shingles one year ago..I have not left the house and do not dress..I'm dizzy ALL THE TIME..migraines are a constant but not like before..fatigue..blurred vision..numbness in extremeties..cold hands and feet..prickly pounds and needs in feet..nausea..and now the heart palpitations are back and the anxiety was controlled but all of a sudden not so much..I'm on a low dose of klonopin..wish you were my doc...the one I see Dr Howard snapper is the only autonomic disorder specialist in the state of Georgia!!! I'm so afraid there's no help for me..I live in my pjs age this past week or more need to balance 2 pair of sunglass on my face to watch TV IF I'M NOT TOO DIZZY...AND I CAN FOCUS. I cry a lot alot..I've doc or me in a psych hospital because he said it was a psychological issue which meant he had no clue..I was there for 4 hours when the doc said we can't help you..you're having panic attacks..well I do have those also..I'm so scared there's nobody out there to help...and I don't want to be the theologocal specimen for my God..you're the only person who had made sense to me and I don't expect an answer...I love in a prison..and while prayer is my only respite...I also know he does not have to heal me..I hope you read my comment.I'm relieved to know I am not crazy but fear this is all I'm going to be until my body gives out..or my broken heart or God only knows what...with respect..Janet Jones
Dear Janet, you are not alone. Hugs and positive energy your way.
@@humanity1st. God bless you
@@humanity1st. thank you for your kind message..waiting for tilt test results...I'll lose it is the result is negative...the test was brutal 😭
I have nOH..it's awful...I'm on midodrine now for 10 days..side effects are pretty awful..but I don't think there's anything else...my bp drops when I get up from laying and sitting but at night in bed my bp hours
Ugh..my message sent before I finished..my bp rises when I lay down or go to bed at night..so that's the difference between POTS and nOH..they both are TERRIBLE...my only friends are you abs pretty reckless does..I pray for you both...I hope to hear from you again...God bless you..janet jones
Great talk. We just need more doctors, who specialize in POTS and Dysautonomia. In Toronto, Ontario, the wait to see a specialist is many many years long....waiting more than 5 years is tough, so this talk really helped me understand my symptoms.
I wish Americans who constantly claim “but healthcare in Canada is free and abundant” would read your comment.
In B.C. Canada...it's NADA...my daughter is 18 and basically lives life from her bed. She is quite unwell and now in all their wisdom, she is on an SNRI as the SSRI didn't do much and she doesn't sleep so is on yet another anti-depressant to sleep. She has had this from very young and no doctor has helped us. They tested at Children's Hospital (our best) for Narcolepsy as she was passing out at school, her lips turning blue even...we told them that, but narcolepsy? what? and when that wasn't it...straight to telling her it was somatic in nature. She dropped out of school, and was a straight A student. We are beside ourselves. I am ready to fly her to Ohio. She has all EDS symptoms, POTS but the EDS we think she has very serious issues internally, she has had trouble urinating and bowel forever...went to emerg this year, because she was so backed up...she is always sweating, her palms sweaty...her heart HURTS and beats too fast, and skips...her ribs HURT she says...she is scared and yes, NOW? Depressed but wants help. I will not stop until we get help. (I typed this all fast while listening...so forgive me)
@@angelbunnyoftheuniverse this country really needs o do better with our health care systems, because they are not helpful and are not about care.
update. my daughter attempted suicide on watch/assessment at the hospital just THIS week. She is crying out. I tried to keep her safe, but we were asleep. She stands slowly from her hospital bed and her resting heart rate jumps to 140, laying down 117-120 and they think it's "somatic" because of mental illness. THE BIOLOGICAL ILLNESS CAME FIRST. They are not hearing me. Blue lipped fainting at 7 yrs old!! Depressed from these many years living from bed and being left out of life! I am now terrified.
MAY GOD CURE ALL THE PEOPLE WITH THOSE SICKNESS!
Woohoo we've all been chosen. Joy. (EDS, hyperPOTS, MCAS trifecta)
This guy is a good speaker. And such a science geek. All her vitals went to zero...it was so cool. Such a geeky thing to say. 😍
What a fantastic presentation. I understand my and my children's conditions better now than after 10 years of other doctors. Thank you!!
Thank you for this excellent video. I live in scotland uk and i get zero treatment. NObody has a clue about eds
Yea Politics - it’s sad how a panel of Dr come to realize something game changing and they can’t convince the industry
Test subject: *Faints*
"Woah that is so cool." Spoken like a true scientist LOL
The painting IS my daughter. I am finding this doctor and help. There is no help in Western Canada.
Thank you
Thank you, Dr. Grubb.
Dr. I am so sorry. Thank you for sharing.
Thank you so much Dr Grubb ..
This was great, thank you for sharing.
Thankyou. Great explanation. I have Pots after a viral illness, take ivabridine which lowers the rate. Never ever felt dizzy. Bp changes. I have levido retucularis too. Also have joint hypermobility and autoimmune disease, landing on fibromyalgia. Complex.
My hypermobile type Ehlers Danlos syndrome was initially misdiagnosed as fibromyalgia, too.
Watching this with EDS and CVID and RA and RSD
EDS is prone to this, but so are mast cell activation patients.
True, but this talk was given at an EDS conference, so maybe that’s why mast cell wasn’t Dr. Grubb’s focus. The talk by Dr. Peter Vadas will address mast cell.
Thank you for the lecture. This is fascinating.
"Goo gummby" We know who gummby is. Showed my age. Pots worrior here. Thank you DR grubb for your study's and taking us seriously.
Well, I have a question. I had positive tilt table for pots syndrome but I have super high BP, not low. I thought i have hyperadnreal type pots, but with is the difference between hyperadrenal pots and baroreflex dysfunction?
I get the high blood pressure from hyperadrenergic POTS, although it can sometimes crash. Medications have fixed this and stabilized my blood pressure, though. If your blood pressure is high, that gives you a lot more options for treating it.
Long story short I am a 21 year old female and March 24 2019 i had a healthy baby boy. 1 week and 1 day later ( April 1 2019) I collapsed at home. I was moved from 10 different hospitals and rehab centers for almost 7 weeks I never came home during that time. Fast forward to last Monday so about 6 months later I get tilt table results back saying i have a severe case of POTS. Heres my symptoms I can't sit up and i cant stand my heart rate spikes. I can go into seizors like episodes sometimes I hear you sometimes I don't. I get migraines but also my head just hurts. I tell my mom where it hurts on my head and sometimes she can feel a bump or an indent. Sometimes when I'm unconscious my mom says I hit where it hurts or pulls my hair out. I remember having pain and when I wake up I say I hurt here and she says she already knows cause its where I was hitting. I had a 3 day EEG recently but these episodes weren't caught on it I had them the day after and for about a week after. I didn't have my normal surroundings my mom thinks. Emotions can trigger it and so can my heat flashes. If I am too hot I go in them. i made it on tilt table for 16 min the most I stood in 6months. I have been bed bound since I collapsed I am home now but use a bed pan and eat laying down I don't sit up either so i never leave the bed. Moving my arm can make my heart spike laying down too. I also have what they are calling real and psychiatric seizors saying I go back and forth without coming out but the EEGs are coming back normal sometimes and abnormal others so they put me on meds anyway. We found out I have a pitoritory adonoma but its 4 by 4 mm so they said it too small to do anything so it not the problem. I am also trying to get winged off hydrocortisone because since I collapsed I wasnt making any cortisol. So now they wanna see if my body has started making any yet. I have to make an appointment for that blood work first though. I have had many tests but no answers. The Electro heart dr wants to put me back on midadrin for the POTS. I took it in the hospital and would still faint on it. Also it would make my heart feel weird it would go in the 40s and jolt me awake literally while i was trying to sleep. I don't know what to do. Its been 6 months i want answers. I have a new baby to take care of my mom helps me and him but this is too much. I can't go outside at all and I always walked everywhere and never drove. I was very independent this has been very hard on me emotionally and physically. Therapist say I'm ok i just need answers and to be cured. I don't know if I should do what the electro heart dr said with restarting the medicine and getting right into therapy and walking again cause when I did that in the rehab I would end up right back in the ER. I have neurologist who did a nerve conduction but everything looked great. I want someone like this DR to look at my files and help me. I need to get back on with my life. I am getting attraphy and afraid I won't be able to walk again if it take much longer. I live in the USA is Las Vegas Nevada. If anyone had advice or can help me with information please let me know.
My dads life was saved by a women heart doctor, but this was in the 80s, not sure she would still be at the hospital there in Vegas. No one in Clinton or Little Rock Arkansas knew what he had. My parents went to Las Vegas, she listened and she knew, rushed him into emergency. I don’t remember her name.
Destiny Mignogna 🙏 for you. I feel bad for you specially having a baby, you both are missing out. I hope they can help you.
@@Fairies00 thank you i do appreciate it. Also very happy someone helped your dad. That gives me a little bit of hope.
Destiny Mignogna yes never give up. Something triggered you to get this having your baby. They need to look in that area. 🙏🙏🙏🙏🙏
I'm sorry to hear that you are going through this. This is pretty miserable. I know that it might sound trite but you're not alone.
I have Dysautonomia, Hypermobile Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Disorder, Multiple Chemical Sensitivities, Degenerative Disk Disease, Arthritis Fibromyalgia, etc. I say all of this because I wonder if there is a similar reason for your symptoms.
1) I know that your main complaint is POTS, but I'm wondering if it is attached to Ehlers Danlos Syndrome (since it nearly always comes with it.) So I'm wondering if you are you excessively bendy or flexible? Have you always had a spot or several spots that are bendy? I know he talked about EDS briefly, but not nearly well enough.
2) It wasn't until I figured out that I am flexible and have POTS that I found my Mast Cell issue. Come to find out that my immune system was really far off the mark because of my dysautonomia. I had huge problems with heat, sunlight and I was fainting constantly (though keep in mind that the symptoms are different for each of us with MCAD/MCAS and Dysautonomia.) Luckily, when I started fixing it with an H2 inhibitor, (which in my case was double doses of Zantac and Zyrtec together twice a day,) I immediately felt a bit better. I could take a walk in the sun or take a hot bath without issues. When I combined it with compression garments, Liquid IV/Gatorade, and salty foods as tools that are available to me, I began to get gradually better. What really mare I feel better is pool therapy and in times of emergency a ton of IV fluids.
I should also tell you that the best part of all this is that you aren't alone! There are a ton of us (especially in POTS and Dysautonomia groups on Facebook and TH-cam who are always available. If you want help hooking up with groups, finding literature or just want to talk, we're here for you. I'm here any time that you want to talk. Even from the floor!
What about hyperPOTs?
Is there any Doctors in Arkansas that listen to these lectures, and are willing to help patients suffering from these conditions????
Join a Facebook group for either dysautonomia or POTS. You will get the best referrals there.
im a pale Male Asian. and i have pots. i dont have hyper joints but a lot more flexible than your average person and easily develop stretch marks . yes i can put my legs at the back of my head, i would not consider my leg to be acrocyanotic but it does get more pale upon standing.
That could still be EDS or HSD. I should see a Rheumatologist and/or a Geneticist. There are 13 types of EDS as well as a dozen other similar issues, so it can be hard to distinguish. If I were you I would start with a Geneticist because many Doctors who are supposed to understand EDS, Marfans, HSD really don't among Rheumatologists. Some of these conditions are dangerous, so I wouldn't risk being misdiagnosed. I would also arm myself with information if I were you. I'd start by watching this series (th-cam.com/video/4qOvHeUgwmQ/w-d-xo.html)and maybe checking into the EDS Society's free Webinars. Let me know if you want to talk or have more questions!
Can you pass the table tilt test and still have this?
Okay then I meant to ask if you fail it can you still have it?@The ILC Charitable Foundation
Yes many have.
Kassondra Ola yes one person took it three times a they finally caught it.
Yes, you can. Not according to the doctors, but you sure can have it. If you want to fail a Tilt test, take it in the morning, or eat a meal before the test and you will fail.
Mornings are worse than afternoons with POTS. So you could fail the test in the morning and pass it later in the afternoon.
I need dr in Arkansas 😬😫
but why am i having pots episodes when i'm laying down too?
Because your POTS is damaging your autonomic nervous system and it can continue to malfunction even when you are not standing.
@@JohnBedson I don't think that's necessarily true... not sure if you're a Dr or not. but I'll reply in case anyone else sees my comment and can relate. I visited an POTs specialist at the university of michigan recently... if you're experiencing POTS like episodes while laying down like me, it may be that you are experiencing adrenaline dumps that are common with hyperadrenergic POTS and Mast Cell Activation Syndrome.
@@KennM12 I 100% agree. But adrenaline (and catecholamine) surges are part of your damaged autonomic nervous system. They should not be doing that. Do your catecholamine surges and symptoms come at the exact same time of day? Are they worse in the early mornings and gradually fade during the day? What symptoms do you get when lying down (supine).
I'm having this too
@@JohnBedson they are not worse at a certain time of day and they do not fade as the day goes on. where are you suggesting this damage is coming from, and is it irreversible? my symptoms are kind of hard to describe. but i get a very sudden and extreme sense of lightheadedness, weakness, warmth, tingling, and increased heart rate. it feels like someone stuck my finger in an electrical socket and my whole body is lit up. feels like i'm dying
Childhood vaccine injuries from all these diseases is always overlooked
Omg my life 🥺been misdiagnosed for two years
Ms.grant...I've been misdiagnosed for 5 years..waiting for a tilt table test August 17..waited 6 months fire the doctor after my cardiologist said I think you have an autonomic disorder...I've been in my pjs for the last year..never leaving my house..been constantly dizzy..can't read and often can't watch tv..can't focus our is too bright..I will pray you find help. Blessings to you Janet Jones
They don't have hEDS, but I call Mom my autoimmune donor and Dad my neuro donor.
good videov
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by ci
So to everyone here. All of these things can be eliminated by change in diet. I had the same symptoms for years until I cut out sugar and gluten and dairy from my diet. I am almost fine now. Please start eating more fruits and veggies. Also fast in between. Worked for me and it could possibley work work for you too.
didnt work for me unfortunately
Hasn't worked for me but happy for you nonetheless
My POTS is caused by hypermobile type Ehlers Danlos syndrome, which is a genetic disorder affecting all of the collagen in my body - including the blood vessels and heart. Unfortunately, changing my diet can't undo the genetic mutation or replace all of the defective collagen in my body.