I just want to say that Dr Rowe was my doctor for almost 10 years until I moved across the country. I can honestly say he saved my life. For a few years no doctor could figure out what was wrong with me. Dr Rowe diagnosed me with CFS, NMH and EDS (I got a triple whammy). He is truly the best doctor I have ever come across. He is very thorough and ALWAYS treats you like a person, not just a medical chart. I will be forever grateful to him.
@@sarahmiller8597 These illnesses can be fixed in Canada, Australia, New Zealand and the UK because Ivabradine is cheap here. But Americans can never be fixed, because Ivabradine costs twenty times as much in the US and insurance won't pay for it. So in the most wealthy country on the planet Americans have to suffer these illnesses because they can't afford tablets that cost cents to produce and sell for many hundreds of Dollars.
I must say, being diagnosed with CFS in1993...just being diagnosed filled me with hope and determination. I spent years reading, signing up and being involved with finding effective treatment that would somehow give back some degree of a productive life. Nothing helped, that is nothing that would be advisable by anyone concerned with my long term health. Inadvisable use of amphetamines, with it's fully destructive effects is the only relief I could find and therefore my choice. Eventually I gave up on finding an effective treatment and focused on daily management and trying to minimize the bad effects of amphetamines. This all started at age 38. I'm now 65 and am just now discovering that effective treatments have been developed and available for years. I now realize I do have orthostatic intolerance, but now have a heart valve problem that may prove to be a roadblock to effective treatment. I dont know what if any choices I have for improvement. Bottom line...
I am pleased you are educating CFS patients about POTS. POTS has only been in the mainstream medical literature since 1993, and you can prove that it does exist with Tilt Table Test. This is useful I think for people with CFS.
Mestinon and a small nightly dose of Clonidine is what ended up fixing my orthostatic intolerance. It took a lot of trying different medications before finding what worked best for me. The Mestinon also eliminated my digestive motility issues as a bonus!
@@ankits7106 Yes. Clonidine and Guanfacine are the two medications which treat hyperadrenergic POTS right at its source by reducing the amount of norepinephrine and adrenaline that gets released into circulation. This targets the sympathetic nervous system by reducing what fuels it. Mestinon targets and stimulates the parasympathetic nervous system, which in turn attenuates the sympathetic nervous system.
@@Dulcimerist thanks, i have normal pots i think cos i have lowish bp 100-105/65-70 so not sure what else can work bcos midodrine did F all for me :(. Although I do think I have sympathetic nervous system overactivation, always have that tired and wired feel
@@ankits7106 There are several different types of medication that can treat these issues, and each individual patient can respond differently since no two people are alike. It takes a good doctor who can think outside the box in order to find the medication that works best for each patient. Unfortunately, there are doctors out there who will just throw Midodrine or Florinef at patients and are too lazy to do anything else. Are you on any medication at all now? You could see if one of your doctors would prescribe a low nightly dose of Clonidine or Guanfacine to see if it helps. Either of those are often prescribed to pediatric patients to treat sleep issues or to address anxiety issues, due to being safer medications than many others. I'm personally on a combination of nightly Clonidine and Doxazosin, and no longer have blood pressure crashes, even though both medications are supposed to reduce blood pressure. Interestingly enough, Doxazosin is the exact opposite of Midodrine.
@@Dulcimerist thanks, yes i recently got a concierge doctor and paid some good $$ out of pocket because i was sick of waiting for 3 months to change meds.Let's see what he wants me to try first.
I was just recently diagnosed after four years of putting up with this condition and not knowing what it was. I'm a chronic case and twenty-two years old so this has been HECK. This video has given me a basis on where to start, great video and talk. Thank you very much.
My favorite guy Greg Page was having problems and he didn't know what was wrong with him so he went to the doctor. Greg got diagnosed with orthostatic intolerance so he left The Wiggles in early 2007.
This is good info but in my case even after having a positive tilt table test, I have received conflicting diagnoses from doctors. I don't think that the teen that he mentioned has CFS or he would not have suddenly gotten better so quickly.
I got POTS after a severe concussion. I BEAT POTS thanks to my Functional Neurologist who was able to properly assess the dysfunction in my autonomic system (brain stem) and was able to remap my brain stem to function more properly with functional neurology brain exercises. Because I was so brain foggy he suspected I may have genetic issues with methylation and detoxification. And he was right, after doing the 23andme test and looking at my raw data they found I have the MTHFR gene requiring special forms of folate. Also I have the other bad genes for B12 and glutathione and require special forms of those. I work closely with a certified Functional Medicine Practitioner (naturopath). With more testing it was found I have auto immune responses to gluten and also need to be dairy free. I did have some food allergies and had to deal with bad gut bugs, killing them off and restoring proper probiotics. Fish oil and special forms of magnesium were important too. But the hydroxy B12 and Folinic Acid were really important. Without Dr. Traster, remapping my brain stem I would have been bedridden with POTS for life. As I said, I no longer have POTS. neurologicwellnessinstitute.com/dr-david-traster/. Www.acnb.org or contact the Carrick Institute for a recommendation.
Amy Zellmer has good videos on youtube talking to Dr. Sass, Dr. Keiser and Dr. Jeremy Schmoe who are Functional Neurologists too that treat POTS. I did not have EDS.
@@prathamrballal1229 Being treated by Dr. Traster involved a week long of intensive Functional neurology brain exercises. 3 sessions a day. Then upon returning home, continued functional neurology brain exercises. And working with a functional medicine practitioner (naturopath) with experience treating people with the MTHFR gene and concussion. It was a process. I did 3 rounds of weeklong therapy with Dr. Traster, months apart, as my concussion was severe and we did brain exercises for visual, vestibular, cognitive, somatosensory and not just my brain stem (autonomic system). The Functional Neurologists usually provide a 15 minute free consultation to get some background info about the patient before accepting them as patients.
I just want to say that Dr Rowe was my doctor for almost 10 years until I moved across the country. I can honestly say he saved my life. For a few years no doctor could figure out what was wrong with me. Dr Rowe diagnosed me with CFS, NMH and EDS (I got a triple whammy). He is truly the best doctor I have ever come across. He is very thorough and ALWAYS treats you like a person, not just a medical chart. I will be forever grateful to him.
But did he fix your POTS? Are you still ill with it?
@@JohnBedson He didn't fix it, no. None of the things I was diagnosed with are fixable. But he gave me the tools to manage all of it. :)
@@sarahmiller8597 These illnesses can be fixed in Canada, Australia, New Zealand and the UK because Ivabradine is cheap here. But Americans can never be fixed, because Ivabradine costs twenty times as much in the US and insurance won't pay for it. So in the most wealthy country on the planet Americans have to suffer these illnesses because they can't afford tablets that cost cents to produce and sell for many hundreds of Dollars.
The actual presentation starts at 8:20
I must say, being diagnosed with CFS in1993...just being diagnosed filled me with hope and determination. I spent years reading, signing up and being involved with finding effective treatment that would somehow give back some degree of a productive life. Nothing helped, that is nothing that would be advisable by anyone concerned with my long term health. Inadvisable use of amphetamines, with it's fully destructive effects is the only relief I could find and therefore my choice. Eventually I gave up on finding an effective treatment and focused on daily management and trying to minimize the bad effects of amphetamines. This all started at age 38. I'm now 65 and am just now discovering that effective treatments have been developed and available for years. I now realize I do have orthostatic intolerance, but now have a heart valve problem that may prove to be a roadblock to effective treatment. I dont know what if any choices I have for improvement. Bottom line...
I am pleased you are educating CFS patients about POTS. POTS has only been in the mainstream medical literature since 1993, and you can prove that it does exist with Tilt Table Test. This is useful I think for people with CFS.
Dr Rowe, Thanks so much for all this information! You have helped immensely.
Mestinon and a small nightly dose of Clonidine is what ended up fixing my orthostatic intolerance. It took a lot of trying different medications before finding what worked best for me. The Mestinon also eliminated my digestive motility issues as a bonus!
did you have hyper pots??
@@ankits7106 Yes. Clonidine and Guanfacine are the two medications which treat hyperadrenergic POTS right at its source by reducing the amount of norepinephrine and adrenaline that gets released into circulation. This targets the sympathetic nervous system by reducing what fuels it.
Mestinon targets and stimulates the parasympathetic nervous system, which in turn attenuates the sympathetic nervous system.
@@Dulcimerist thanks, i have normal pots i think cos i have lowish bp 100-105/65-70 so not sure what else can work bcos midodrine did F all for me :(. Although I do think I have sympathetic nervous system overactivation, always have that tired and wired feel
@@ankits7106 There are several different types of medication that can treat these issues, and each individual patient can respond differently since no two people are alike. It takes a good doctor who can think outside the box in order to find the medication that works best for each patient. Unfortunately, there are doctors out there who will just throw Midodrine or Florinef at patients and are too lazy to do anything else.
Are you on any medication at all now? You could see if one of your doctors would prescribe a low nightly dose of Clonidine or Guanfacine to see if it helps. Either of those are often prescribed to pediatric patients to treat sleep issues or to address anxiety issues, due to being safer medications than many others.
I'm personally on a combination of nightly Clonidine and Doxazosin, and no longer have blood pressure crashes, even though both medications are supposed to reduce blood pressure. Interestingly enough, Doxazosin is the exact opposite of Midodrine.
@@Dulcimerist thanks, yes i recently got a concierge doctor and paid some good $$ out of pocket because i was sick of waiting for 3 months to change meds.Let's see what he wants me to try first.
I was just recently diagnosed after four years of putting up with this condition and not knowing what it was. I'm a chronic case and twenty-two years old so this has been HECK. This video has given me a basis on where to start, great video and talk. Thank you very much.
Korin has it gotten any better now?
this is a live-saving lecture for me. recently dx'd with POTS but my specific symptoms fit in with the additional info.. thanks sooo very much!
Thanks for this. I've got NMH & POTS. I picked up a few pointers I was unaware of previously.
How is ur pots?
My favorite guy Greg Page was having problems and he didn't know what was wrong with him so he went to the doctor. Greg got diagnosed with orthostatic intolerance so he left The Wiggles in early 2007.
Can people heal fully from NMH & return to work full time? I'd love to hear some amazing success stories! This is fantastic information!
How is ur pots?
This is good info but in my case even after having a positive tilt table test, I have received conflicting diagnoses from doctors. I don't think that the teen that he mentioned has CFS or he would not have suddenly gotten better so quickly.
A very interesting talk. Thanks very much.
Very comprehensive!
EDs is joint hypermobility syndrome.
This explains my health problems pretty well, but I do not have CFS, just OI and POTS.
How is ur pots?
stomach binders - where can you get them? We have been looking at back braces (look similar) for EDS issues, but the stays poked too much.
49:58 talks about intravenous saline
What about OI with hypertension not hypotension???! Help!!
Your blood pressure goes up when standing? Id look up dr berry insulin resistance, cause of high blood pressure.
H-o-w can we contribute cash for further Research?... :)
Is there a way to print individual slides? This is very, very interesting. My 18 year old daughter has EDS, CFS and POTS.
Screen shots? That’s what I did.👍
@@jonisimpson2624 did screen shots exist 10 yrs ago? 😆
- From what I can gather, - SOME peptides help us & fasting;too!!... :)
I got POTS after a severe concussion. I BEAT POTS thanks to my Functional Neurologist who was able to properly assess the dysfunction in my autonomic system (brain stem) and was able to remap my brain stem to function more properly with functional neurology brain exercises. Because I was so brain foggy he suspected I may have genetic issues with methylation and detoxification. And he was right, after doing the 23andme test and looking at my raw data they found I have the MTHFR gene requiring special forms of folate. Also I have the other bad genes for B12 and glutathione and require special forms of those. I work closely with a certified Functional Medicine Practitioner (naturopath). With more testing it was found I have auto immune responses to gluten and also need to be dairy free. I did have some food allergies and had to deal with bad gut bugs, killing them off and restoring proper probiotics.
Fish oil and special forms of magnesium were important too. But the hydroxy B12 and Folinic Acid were really important. Without Dr. Traster, remapping my brain stem I would have been bedridden with POTS for life. As I said, I no longer have POTS.
neurologicwellnessinstitute.com/dr-david-traster/. Www.acnb.org or contact the Carrick Institute for a recommendation.
Amy Zellmer has good videos on youtube talking to Dr. Sass, Dr. Keiser and Dr. Jeremy Schmoe who are Functional Neurologists too that treat POTS. I did not have EDS.
What u did for healing?
@@prathamrballal1229 Being treated by Dr. Traster involved a week long of intensive Functional neurology brain exercises. 3 sessions a day. Then upon returning home, continued functional neurology brain exercises. And working with a functional medicine practitioner (naturopath) with experience treating people with the MTHFR gene and concussion. It was a process. I did 3 rounds of weeklong therapy with Dr. Traster, months apart, as my concussion was severe and we did brain exercises for visual, vestibular, cognitive, somatosensory and not just my brain stem (autonomic system). The Functional Neurologists usually provide a 15 minute free consultation to get some background info about the patient before accepting them as patients.
9:35 ish
17:21
Too much BS. Get to the lecture.
@Sarah - Did Dr. Rowe mention that a lot of people diagnosed with CFS may also have EDS? EDS is greatly underdiagnosed.
Anything to help c curve stenosis?
41:05