Thank you for taking the time to share this with people. My teen has POTS and so far our doctors are most concerned with the fainting. But fatigue and digestion issues she says are a bigger deal to how she feels all the time. It makes sense to think about the dysregulation of coordinating actions impacting digestion. It’s encouraging to hear of actions that helped someone improve.
Dr Keiser I would absolutely love to see a real case description such as this on someone who has had a long-term PCS or TBI with pot and small fiber neuropathy. Your work is fascinating. Thank you.
Hi Dr. Keiser! Thank you for your videos, they provide me with both knowledge and hope. I have a daughter with POTS, which developed in connection with an infection during Christmas 2021. She has always had a sensitive stomach, but after the infection, she ended up with both POTS and GERD, and has been taking Omeprazole for just over a year now. Every time we try to phase out the Omeprazole, all her symptoms get much worse; she becomes more fatigued, experiences more palpitations, has trouble sleeping, stomach cravings, early satiety, heartburn, and so on. I used to think that if we could just eliminate the Omeprazole and get her stomach functioning again, everything would fall into place. Now I am starting to lose hope in that approach. Every time we try to phase it out, no matter how slowly we do it, there's a setback, and we end up on a higher dose than before. Watching your video, I understand that we may need to work from a different angle. Could it be that if we strengthen the right parts of the brain, the stomach might start to function properly again? We live in Sweden and therefore have a long way to go to see you, but I have found a woman here who is skilled in eye training. Do you think there's a chance that eye training alone could solve the problem?
I also had a terrible time trying to get my daughter off omeprazole for Gerd. We decreased it very slowly by taking 1 grain out at a time from each individual capsule on a weekly basis and managed to get her off it completely. She is also on a gluten free dairy free diet
Things that work for me are B1 B5 digestive enzymes and candex to kill the overgrowth of the bad bacteria ( no more than 3 weeks of using it) Breathing exercises, working out, walks Be careful with vitamin B6
Dear Dr. Kaiser, I have been diagnosed with POST COVID-19 POTS Dysautonomia. It took over four years for a until I FINALLY was able to see a Cardio Dysautonomia MD to FINALLY give me a Tilt Table Test to prove this condition. From this positive test, I am FINALLY going to be able to see an Immunologist, a NeuroMuscular Specialist and a Neurosurgeon. I pray that those specialists give me the proper testing to help me. So far, my Gastroenterologist STILL is baffled with what to do with my Colon and Digestive System. I have Gastro Motility issues. My Gastro has referred me to a Gastro Motility PT and prescribed Linzess. I STILL have Motility issues. I keep asking my GASTRO to get digestive testing. He feels that there is NO NEED. This is extremely frustrating.
Wishing you all the best... But the only cure is exercise. Unless they find some mechanical/physical reason for your symptoms, like a clot blocking blood flow, exercise is the only way out. But welcome to the world of Dysautonomia. I've been POTS dx for 12 years. The first 5 years my cardiologist told me to learn to live with it. Changed cardiologists and he gave me one Rx, twice a day. Now I can walk and perform limited minor activities and then rest again. It sucks. Don't lose hope, but create realistic expectations.
What size monofilament are you using for testing? Do you use different size filaments depending on the area of the body? Do you use size of the monofilament to monitor progress?
Been waiting for this one Nate, thanks for sharing! Being able to make that link between sensory information coming in through the periphery and that translating to motor output in the central ANS is truly one of the most remarkable discoveries when it comes to understanding these debilitating chronic conditions; as you said, you see most of these issues as movement disorders, which makes perfect sense, especially in this particular case study. Was her gastroparesis on the left side was due to hypokinetic movement of the GI tract and that's why you worked to improve the left-sided cerebellum through those peripheral inputs? I presume training that left cerebellum along with the right frontal cortex allowed her to better sense the ground beneath her/where she was in space and that caused the system as a whole to work in a much more coordinated fashion.
Hello my friend 😊 I think that would be a good way to conceptualize this type of a case. It seems difficult for the brain to command a body that it cannot feel. Talk soon 🎉
Isometric contraction can slow things down on that side then? So is that why they always recommend the compression arm bands or socks. I have more problem to the right and up. I don’t think I have nystagmus. My dad and I both got POTS after covid.
This was interesting. I have 4 autoimmune diseases and believe I have dysautonomia/ gastroparesis without Pots. I get pain, severe breathing difficulty and dizziness after a large meal. A large meal for me would be a normal size meal for most people. Negative on upper GI and I have never been able to get a 4 hour gastric emptying study done because for ten years I have not been taken seriously by Doctors or they just plain don't know what to do. They will never tell you that. On a different subject, I just want to point put, that in my experience talking with others like my self. one side of the body symptoms are are quite common, at least with Sjogren's and MS. If I have correctly understod your recommendations, I would not know where to begin to find a specialist who works with retraining the brain or strengtening the pathways. I don't know if this could work if your myelin is being destroyed by your disease. Anyway, Appreciate your putting this information out there. Most neurologists & Rheumatologists don't get into this kind of depth of explanation.
Mary Ann, I have been diagnosed with POST COVID-19 POTS Dysautonomia. It took over four years for a until I FINALLY was able to see a Cardio Dysautonomia MD to FINALLY give me a Tilt Table Test to prove this condition. From this positive test, I am FINALLY going to be able to see an Immunologist, a NeuroMuscular Specialist and a Neurosurgeon. I pray that those specialists give me the proper testing to help me. So far, my Gastroenterologist STILL is baffled with what to do with my Colon and Digestive System. I have Gastro Motility issues. My Gastro has referred me to a Gastro Motility PT and prescribed Linzess. I STILL have Motility issues. I keep asking my GASTRO to get digestive testing. He feels that there is NO NEED. This is extremely frustrating.
Have you had any patients present with 820 gastrin levels? I've been sick on and off for over 32yrs, I was recently told I "might" have POTS so now I am having lots of tests. I also have a Protein S Deficiency. I faint if I eat large meals so I've learned I can't do that, heart races and I lose consciousness and lose everything I eat. My legs get weak at times and I have edema in them. This is all very personal but I am learning from others they've had similar events. It an extremely scary event. Tested negative for lupus and MS.
How many people worh these conditions have been falsely accused of DUI for some false step or eye movement after cops stopped them for some small traffic offense? How many jailed for hours and out thousands to a lawyer before they were proved not drunk? Well come to TN
When a person is stopped by the police, you are asked if you have any conditions which would affect your balance or ability to do a field sobriety test. I believe the answer would be yes.
I need to find a good dr in Northern California 😫 i have many symptoms and pots is out of control 😫 even with doing what my Dr's advised me to do i also have hypertension and have hade stomach issues scenes being very young ,im still waiting for my colonoscopy to be done
Hi there I’m so sorry to hear that you are having such a difficult time. If you would like to get in contact with our office and ask some questions feel free! You can call or text us at (734)-707-5105! Hope to hear from you!
@@gailsstation. You cant take b6 more than a safe dose. You can easily overdose it and start feeling worse. Please do your own research what dosage is safe for each B vitamins. Buy each vitamin separately. B1 is important for pots. But also B12 B5 B9 and B6 . Read about the dosage . Speaking from experience.
This person like most that come in dealing with autonomic symptoms had pursued an extensive trial of MANY supplements including thiamine and assorted b vitamins. Needless to say, not the underlying problem in this case.
Also as logic would follow, if there was a B1 deficiency, then there wouldn’t be an amelioration of symptoms and improvement in function from Neuro rehabilitation. From your multiple comments it is evident that you feel strongly about this vitamin and I hope it is due to your personal success story. I hope from what is presented here people see how there are many causes that can underlay these syndromes and trying to pigeon hole cases into a one cause one cure algorithm can be detrimental to a large number of people. Take care
Thank you for taking the time to share this with people. My teen has POTS and so far our doctors are most concerned with the fainting. But fatigue and digestion issues she says are a bigger deal to how she feels all the time. It makes sense to think about the dysregulation of coordinating actions impacting digestion. It’s encouraging to hear of actions that helped someone improve.
You have a great ability to explain huge concepts clearly. Thank you for caring and trying. Wish all schools had thinkers lile you.
Dr Keiser I would absolutely love to see a real case description such as this on someone who has had a long-term PCS or TBI with pot and small fiber neuropathy. Your work is fascinating. Thank you.
Hi Dr. Keiser! Thank you for your videos, they provide me with both knowledge and hope. I have a daughter with POTS, which developed in connection with an infection during Christmas 2021. She has always had a sensitive stomach, but after the infection, she ended up with both POTS and GERD, and has been taking Omeprazole for just over a year now. Every time we try to phase out the Omeprazole, all her symptoms get much worse; she becomes more fatigued, experiences more palpitations, has trouble sleeping, stomach cravings, early satiety, heartburn, and so on. I used to think that if we could just eliminate the Omeprazole and get her stomach functioning again, everything would fall into place. Now I am starting to lose hope in that approach. Every time we try to phase it out, no matter how slowly we do it, there's a setback, and we end up on a higher dose than before.
Watching your video, I understand that we may need to work from a different angle. Could it be that if we strengthen the right parts of the brain, the stomach might start to function properly again? We live in Sweden and therefore have a long way to go to see you, but I have found a woman here who is skilled in eye training. Do you think there's a chance that eye training alone could solve the problem?
I also had a terrible time trying to get my daughter off omeprazole for Gerd. We decreased it very slowly by taking 1 grain out at a time from each individual capsule on a weekly basis and managed to get her off it completely. She is also on a gluten free dairy free diet
Love video because u discuss some activities that was done to improve symptoms.
Looking for info for my nephew ..
Things that work for me are B1 B5 digestive enzymes and candex to kill the overgrowth of the bad bacteria ( no more than 3 weeks of using it)
Breathing exercises, working out, walks
Be careful with vitamin B6
I heard you mention numerous medications but I didnt hear you say anything about high dose B vitamins especially B1....hmmm
This guy never talks about nutrients
When she presented time stamps are helpful. Thanks for the video.
Hey Nathan, thanks for you detailed video. I just wonder if I can through learning piano to help cure the POTS?
Dear Dr. Kaiser, I have been diagnosed with POST COVID-19 POTS Dysautonomia. It took over four years for a until I FINALLY was able to see a Cardio Dysautonomia MD to FINALLY give me a Tilt Table Test to prove this condition. From this positive test, I am FINALLY going to be able to see an Immunologist, a NeuroMuscular Specialist and a Neurosurgeon. I pray that those specialists give me the proper testing to help me. So far, my Gastroenterologist STILL is baffled with what to do with my Colon and Digestive System. I have Gastro Motility issues. My Gastro has referred me to a Gastro Motility PT and prescribed Linzess. I STILL have Motility issues. I keep asking my GASTRO to get digestive testing. He feels that there is NO NEED. This is extremely frustrating.
Wishing you all the best... But the only cure is exercise. Unless they find some mechanical/physical reason for your symptoms, like a clot blocking blood flow, exercise is the only way out. But welcome to the world of Dysautonomia. I've been POTS dx for 12 years. The first 5 years my cardiologist told me to learn to live with it. Changed cardiologists and he gave me one Rx, twice a day. Now I can walk and perform limited minor activities and then rest again. It sucks. Don't lose hope, but create realistic expectations.
What size monofilament are you using for testing? Do you use different size filaments depending on the area of the body? Do you use size of the monofilament to monitor progress?
Been waiting for this one Nate, thanks for sharing!
Being able to make that link between sensory information coming in through the periphery and that translating to motor output in the central ANS is truly one of the most remarkable discoveries when it comes to understanding these debilitating chronic conditions; as you said, you see most of these issues as movement disorders, which makes perfect sense, especially in this particular case study. Was her gastroparesis on the left side was due to hypokinetic movement of the GI tract and that's why you worked to improve the left-sided cerebellum through those peripheral inputs? I presume training that left cerebellum along with the right frontal cortex allowed her to better sense the ground beneath her/where she was in space and that caused the system as a whole to work in a much more coordinated fashion.
Hello my friend 😊
I think that would be a good way to conceptualize this type of a case.
It seems difficult for the brain to command a body that it cannot feel.
Talk soon 🎉
excellent video - thanks!
Isometric contraction can slow things down on that side then? So is that why they always recommend the compression arm bands or socks. I have more problem to the right and up. I don’t think I have nystagmus. My dad and I both got POTS after covid.
What wad the medication given to her?
Please tell me a good doctor in Sydney :(
This was interesting. I have 4 autoimmune diseases and believe I have dysautonomia/ gastroparesis without Pots. I get pain, severe breathing difficulty and dizziness after a large meal. A large meal for me would be a normal size meal for most people. Negative on upper GI and I have never been able to get a 4 hour gastric emptying study done because for ten years I have not been taken seriously by Doctors or they just plain don't know what to do. They will never tell you that. On a different subject, I just want to point put, that in my experience talking with others like my self. one side of the body symptoms are are quite common, at least with Sjogren's and MS. If I have correctly understod your recommendations, I would not know where to begin to find a specialist who works with retraining the brain or strengtening the pathways. I don't know if this could work if your myelin is being destroyed by your disease. Anyway, Appreciate your putting this information out there. Most neurologists & Rheumatologists don't get into this kind of depth of explanation.
Mary Ann, I have been diagnosed with POST COVID-19 POTS Dysautonomia. It took over four years for a until I FINALLY was able to see a Cardio Dysautonomia MD to FINALLY give me a Tilt Table Test to prove this condition. From this positive test, I am FINALLY going to be able to see an Immunologist, a NeuroMuscular Specialist and a Neurosurgeon. I pray that those specialists give me the proper testing to help me. So far, my Gastroenterologist STILL is baffled with what to do with my Colon and Digestive System. I have Gastro Motility issues. My Gastro has referred me to a Gastro Motility PT and prescribed Linzess. I STILL have Motility issues. I keep asking my GASTRO to get digestive testing. He feels that there is NO NEED. This is extremely frustrating.
Have you had any patients present with 820 gastrin levels? I've been sick on and off for over 32yrs, I was recently told I "might" have POTS so now I am having lots of tests. I also have a Protein S Deficiency. I faint if I eat large meals so I've learned I can't do that, heart races and I lose consciousness and lose everything I eat. My legs get weak at times and I have edema in them. This is all very personal but I am learning from others they've had similar events. It an extremely scary event. Tested negative for lupus and MS.
How many people worh these conditions have been falsely accused of DUI for some false step or eye movement after cops stopped them for some small traffic offense? How many jailed for hours and out thousands to a lawyer before they were proved not drunk? Well come to TN
When a person is stopped by the police, you are asked if you have any conditions which would affect your balance or ability to do a field sobriety test. I believe the answer would be yes.
@kathymc234 They don't listen. Telling them dies nothing in TN.
Not asked that By cops in Hamilton Mt.
I need to find a good dr in Northern California 😫 i have many symptoms and pots is out of control 😫 even with doing what my Dr's advised me to do i also have hypertension and have hade stomach issues scenes being very young ,im still waiting for my colonoscopy to be done
Hi there I’m so sorry to hear that you are having such a difficult time. If you would like to get in contact with our office and ask some questions feel free! You can call or text us at (734)-707-5105! Hope to hear from you!
@@dockeisereven if I am in Texas?
Does sshe have sensory damage?
Chronic thiamine deficiency. Gut BeriBeri. High dose allithiamine and benfothiamin.
I am taking a B Conplex 2 times a day. How much mg of thiamine is it?
@@gailsstation. You cant take b6 more than a safe dose. You can easily overdose it and start feeling worse. Please do your own research what dosage is safe for each B vitamins.
Buy each vitamin separately.
B1 is important for pots.
But also B12 B5 B9 and B6 . Read about the dosage .
Speaking from experience.
Thiamine
This person like most that come in dealing with autonomic symptoms had pursued an extensive trial of MANY supplements including thiamine and assorted b vitamins. Needless to say, not the underlying problem in this case.
Also as logic would follow, if there was a B1 deficiency, then there wouldn’t be an amelioration of symptoms and improvement in function from Neuro rehabilitation. From your multiple comments it is evident that you feel strongly about this vitamin and I hope it is due to your personal success story. I hope from what is presented here people see how there are many causes that can underlay these syndromes and trying to pigeon hole cases into a one cause one cure algorithm can be detrimental to a large number of people. Take care