I was misdiagnosed for decades! Found out at age 63 that I have POTS, which started at 15. I was able to fight it off when I was younger and actually became a world class athlete. I attribute the training to making me feel well enough to lead a normal life. But as I gradually got away from the sport, and the workouts, I also got gradually worse. People see you in shape, working out and never consider that on the inside you may be feeling lousy.
Thank you. My daughter is fighting POTS at 17. She has gone down with a lot of issues. We are determined to get her on the right track. Appreciate this video so much
Great video , I experience all these symptoms of brain fog, dizziness,fainting , fatigue, aches and pains that are flu like , heart racing , blurred vision. It’s truly debilitating.
Excellent video! You have explained my symptoms in layman’s terms. I have seen so many doctors for pots and dysautonomia, your explanation helped clarify my symptoms.🙏
i think i developed pots as a teenager but wasn’t diagnosed until 25 because my symptoms were so vague and ultimately i was able to live a normal life. people just called me lazy sometimes but i still played sports and did well in school. it wasn’t until college when i stopped being so active that my symptoms got worse enough to pursue a diagnosis
I had this all my life. We moved to arizona and I struggled for years. I got used to hearing the sound of my heart beat. My resting hbr is 40, but goes to 150 at even a stressful thought
My son age 14 just diagnosed. And we are looking forward to sharing information to also receive more support for his condition. Below is a diagnosis story fir my son. Please share
Hi, as someone that has developed POTS after concussion and now nearly recovered from it I should tell you that your information is not entirely correct. Tilt table was positive 1 month in from concussion evident of POTS and now 4 months in nearly I do not have the 30 bpm increase upon standing for extended periods of time. I've spoken to top neurologists in NYC and both have also reassured that recovery from POTS after a concussion is achievable. And no you do not have to maintain your constant aerobic activity after you have recovered although you should always exercise in some way because its just beneficial. I am still symptomatic but not even close to what I was just two months ago. Sadly there is very limited studies done on this dysfunction after concussion so I can see why there is conflicting information. The route to POTS is different for everyone and TBI and viral onset are the most promising routes to a full recovery. For anyone going through this it requires patience, stay focused drink your electrolytes, and do your exercise you will see improvement.
One last note. There was a study done in 2016 which is reassuring for teenagers who have developed POTS after concussion. According to my autonomic neurologist this is evident for patients above the age of 18 as well so not to worry. Orthostatic Intolerance and Autonomic Dysfunction in Youth With Persistent Postconcussion Symptoms: A Head-Upright Tilt Table Study Geoffrey L Heyer 1, Anastasia Fischer, Julie Wilson, James MacDonald, Sarah Cribbs, Reno Ravindran, Thomas L Pommering, Steven Cuff Abstract Objective: To explore head-upright tilt table (HUT) signs of autonomic dysfunction in a cohort of youth with persistent postconcussion symptoms (PCSs) that include light-headedness and to correlate repeat tilt table results with symptom improvements for those patients found to have postural tachycardia syndrome (POTS) on initial testing. Design: Prospective cohort design. Setting: Nationwide Children's Hospital, Neurology Clinic. Participants: Thirty-four patients (13-18 years of age) with persistent PCSs. Main outcome measures: All patients underwent at least 1 tilt table test. The PCS Interview (PCS-I) and patient ratings of light-headedness and vertigo were used to measure symptom burden. Patients found to have POTS were asked to repeat tilt table testing when PCSs improved or 3 to 6 months after the initial test if symptoms persisted. Results: Twenty-four of the 34 (70.6%) patients had abnormal tilt table results with patients categorized as normal (n = 10), isolated syncope (n = 10), and POTS (n = 14). Patients with POTS had higher PCS-I scores than normal patients (P < 0.001) and higher ratings of light-headedness than both normal patients (P = 0.015) and syncope patients (P = 0.04). Twelve POTS patients underwent repeat tilt table testing, and 9 of 12 (75%) no longer met POTS diagnostic criteria. All patients with resolution of POTS had corresponding improvements in PCSs, including light-headedness and vertigo. Conclusions: Our study demonstrates a high rate of tilt table abnormalities among youth with persistent PCSs. Several patients with POTS had normalization of tilt table testing when PCSs improved. These findings warrant further research of autonomic dysfunction related to concussion. Clinical relevance: Our study is the first to prospectively characterize autonomic dysfunction in patients with persistent PCSs using HUT testing and to show that the tilt test abnormalities normalize in some patients as PCSs improve.
So I'm confused...what did we say in this video that conflicts with anything you said here? POTS is recoverable...takes time/patience....requires increasing salt (electrolyte) content and exercise...exactly what this video states
@@CompleteConcussions I was informed that not every patient needs to continue doing aerobic exercises daily and that the nervous system can return to normal functioning
@@jeremywades This may be true...but from the context of concussion, aerobic exercise is one of the best ways to recover. So we will always promote it. Also, inactivity can be a catalyst for POTS, so I would always recommend that someone who's worked so hard to get rid of it, to continue working to keep it away!
I got a head injury / concussion that put me out of working out and exercise for 5 months and now I have been diagnosed with POTS and I'm still trying to figure out my other health issues. It's pretty annoying and I'm hoping my symptoms don't get much worse and my head is able to figure itself out. I have pretty normal blood pressure it's just my headrate jumps from 50-60 to 90-100.
holy moly I just got to the part where you said you can get POTS from stopping exercising and getting a concussion. It would be awesome if I get rid of this stuff! I love you, you handsome internet doctor man!
Pretty sure this happened to me after a side swipe wreck out of the blue my legs would go dead at work and my concussion symptoms started 8 weeks after the wreck I just randomly started getting weak shakey jelly legs and odd sensory synptoms
Anyone looked into underlying methemoglobemia (which can be easily treated with oral or IV methylene blue) in case concussion symptoms don't improve? 'pots' and methem. have very similar symptoms, and also comes down to blood oxygen transport inefficiency. Nitrates cause progressive methemoglobemia, especially in rural America. There is a gigantic ammonia nitrate air concentration in the US centered in Iowa. Tap water is also often highly contaminated with nitrates from fertilizers. I noticed said symptoms myself when I lived in rural US and reset my blood oxygen/cured it with a single dose of oral methylene blue. (yes it will stain everything blue including your pee but it will go away. To neutralize spills you can use ascorbic acid powder. I just buy the popular fish version of mb, but that's just me and there are other options)
Increasing sodium intake is not good for all pots patients. If you happen to have hyper pots and you're one of those people whose blood pressure spikes sodium intake does not need to be increased. I am a hyper pots patient.
Why do you say that the treatment for POTS is exercise? And does the cause of the POTS determine the treatment..... or will exercise work for most everyone? Also.... excellent video !!!!! 😎👊😍
I say that the treatment is exercise because the treatment is exercise (among other things) - POTS is a form of dysautonomia - meaning a dysfunction of the autonomic nervous system. Exercise helps to regulate the autonomic nervous system (resting creates more dysfunction). There are other things that have to be done in conjunction with exercise, but yes, the protocol is fairly effective for most people
So I am a 26 year old male with POTS. I started getting symptoms about a month after having quite a bad concussion, I was getting better and had a attack of symptoms and now back to square one again.
@@TheBushRanger. oh sorry mate I was confused for a minute there. I now have Oropharyngeal Dysphagia (difficulty swallowing) due to Autonomic Dysfunction (POTS) so it's incredibly hard for me to eat and drink without choking. I am now referred to Neurology pending investigations into a brain injury and other potential causes. I've had 2 Endoscopes put down my throat to check for cancer and structural defects, I've also had a barium swallow test and full torso CT scan as well as a CT brain scan done recently and everything is normal. Hope you're well, keep fighting.
I got a severe concussion in February. I found out my heart rate was off over the summer because of the concussion. I went to physical therapy to try to control it. She released me and I guess it never fixed itself. My heart rate still to this day jumps on the low end 30 bpm and on the high end 50 bpm from rest to standing. Once I am standing, my heart rate can get all the way to 145 bpm just standing there. One time I was just sitting on the couch and decided to walk up the stairs and my heart rate got all the way to 165 bpm just walking up the stairs. I experience increased mild head pain upon standing from all of this, but that is about it. No other symptoms upon standing. Could this be POTS or something else? My physical therapist never mentioned POTS or anything.
@@TheBushRanger. Still dealing with all of my post concussion symptoms, but it’s just something I’ve gotten used to. Heart rate wise, I’m guessing it’s just a dysautonomia from my concussion because the cardiologist said I don’t have POTS.
@@TheBushRanger. Sometimes it does. My heart rate is always high resting and always jumps very high from rest to standing. At least 30 bpm apart. Sometimes it can go to 140 while just standing but it fluctuates and can be lower like 130s, 120s or 110s too while I’m standing. But yes, my cardiologist said I don’t have POTS even though my HR can get that high sometimes while standing.
No offense, but why would we be satisfied with managing POTS symptoms when so many people out there have complete recovery? Levine’s protocol May be better than nothing, but there are so many approaches out there that actually address the dysfunction in the autonomic nervous system. Standard medicine doesn’t do much for recovery, so don’t depend on it. Search RUclips for POTS recovery and you will find much more effective treatments and methods.
no offense but these types of measures are the first line of defense in any POTS case. Dysautonomia and Autonomic dysregulation is often completely cured with these types of measures...this is the treatment. The next line of defense is medication (which comes with a whole host of additional side-effects...and isn't really fixing any underlying cause)...
@@CompleteConcussions I was told about these management techniques and they helped only very minimally. For many people medication doesn’t help at all or makes them worse. Eventually I found a chiropractic neurologist who specializes in dysautonomia and I’ve had much better improvement since seeing him. I’m not saying don’t do the Levine protocol, just that there are other highly effective treatments that most doctors (when those who know about POTS) are unaware of. And maybe most importantly, doctors often tell POTS patients that the best they can do is manage it. This is terrible for a patient, especially since the nervous system is at the root of it.
@@becky6598 these treatments are actually addressing the issues with the autonomic nervous system. The way to address autonomic dysregulation is through these types of techniques. This isn't just living with symptoms...it's actually addressing the root underlying cause. There are a number of ways to do this however this protocol has evidence of effectiveness behind it and is a conglomeration of multiple strategies put together.
I was misdiagnosed for decades! Found out at age 63 that I have POTS, which started at 15. I was able to fight it off when I was younger and actually became a world class athlete. I attribute the training to making me feel well enough to lead a normal life. But as I gradually got away from the sport, and the workouts, I also got gradually worse. People see you in shape, working out and never consider that on the inside you may be feeling lousy.
what sport
Thank you. My daughter is fighting POTS at 17. She has gone down with a lot of issues. We are determined to get her on the right track. Appreciate this video so much
This is such a great video. I was diagnosed with pots two months ago.
Great video , I experience all these symptoms of brain fog, dizziness,fainting , fatigue, aches and pains that are flu like , heart racing , blurred vision. It’s truly debilitating.
Excellent video! You have explained my symptoms in layman’s terms. I have seen so many doctors for pots and dysautonomia, your explanation helped clarify my symptoms.🙏
Glad we could help!
i think i developed pots as a teenager but wasn’t diagnosed until 25 because my symptoms were so vague and ultimately i was able to live a normal life. people just called me lazy sometimes but i still played sports and did well in school. it wasn’t until college when i stopped being so active that my symptoms got worse enough to pursue a diagnosis
Common!
Same just experiencing this 3 weeks ago
Great video and explanation of this condition thank you!!!
I had this all my life. We moved to arizona and I struggled for years. I got used to hearing the sound of my heart beat. My resting hbr is 40, but goes to 150 at even a stressful thought
My son age 14 just diagnosed. And we are looking forward to sharing information to also receive more support for his condition. Below is a diagnosis story fir my son. Please share
ruclips.net/video/JWpozHGcUSk/видео.html Bodes story of POTS diagnosis
Hi, as someone that has developed POTS after concussion and now nearly recovered from it I should tell you that your information is not entirely correct. Tilt table was positive 1 month in from concussion evident of POTS and now 4 months in nearly I do not have the 30 bpm increase upon standing for extended periods of time. I've spoken to top neurologists in NYC and both have also reassured that recovery from POTS after a concussion is achievable. And no you do not have to maintain your constant aerobic activity after you have recovered although you should always exercise in some way because its just beneficial. I am still symptomatic but not even close to what I was just two months ago. Sadly there is very limited studies done on this dysfunction after concussion so I can see why there is conflicting information. The route to POTS is different for everyone and TBI and viral onset are the most promising routes to a full recovery. For anyone going through this it requires patience, stay focused drink your electrolytes, and do your exercise you will see improvement.
I should add that concussion can also be the mechanism for onset of POTS with EDS and joint hypermobility disorders, which is less promising.
One last note. There was a study done in 2016 which is reassuring for teenagers who have developed POTS after concussion. According to my autonomic neurologist this is evident for patients above the age of 18 as well so not to worry.
Orthostatic Intolerance and Autonomic Dysfunction in Youth With Persistent Postconcussion Symptoms: A Head-Upright Tilt Table Study
Geoffrey L Heyer 1, Anastasia Fischer, Julie Wilson, James MacDonald, Sarah Cribbs, Reno Ravindran, Thomas L Pommering, Steven Cuff
Abstract
Objective: To explore head-upright tilt table (HUT) signs of autonomic dysfunction in a cohort of youth with persistent postconcussion symptoms (PCSs) that include light-headedness and to correlate repeat tilt table results with symptom improvements for those patients found to have postural tachycardia syndrome (POTS) on initial testing.
Design: Prospective cohort design.
Setting: Nationwide Children's Hospital, Neurology Clinic.
Participants: Thirty-four patients (13-18 years of age) with persistent PCSs.
Main outcome measures: All patients underwent at least 1 tilt table test. The PCS Interview (PCS-I) and patient ratings of light-headedness and vertigo were used to measure symptom burden. Patients found to have POTS were asked to repeat tilt table testing when PCSs improved or 3 to 6 months after the initial test if symptoms persisted.
Results: Twenty-four of the 34 (70.6%) patients had abnormal tilt table results with patients categorized as normal (n = 10), isolated syncope (n = 10), and POTS (n = 14). Patients with POTS had higher PCS-I scores than normal patients (P < 0.001) and higher ratings of light-headedness than both normal patients (P = 0.015) and syncope patients (P = 0.04). Twelve POTS patients underwent repeat tilt table testing, and 9 of 12 (75%) no longer met POTS diagnostic criteria. All patients with resolution of POTS had corresponding improvements in PCSs, including light-headedness and vertigo.
Conclusions: Our study demonstrates a high rate of tilt table abnormalities among youth with persistent PCSs. Several patients with POTS had normalization of tilt table testing when PCSs improved. These findings warrant further research of autonomic dysfunction related to concussion.
Clinical relevance: Our study is the first to prospectively characterize autonomic dysfunction in patients with persistent PCSs using HUT testing and to show that the tilt test abnormalities normalize in some patients as PCSs improve.
So I'm confused...what did we say in this video that conflicts with anything you said here? POTS is recoverable...takes time/patience....requires increasing salt (electrolyte) content and exercise...exactly what this video states
@@CompleteConcussions I was informed that not every patient needs to continue doing aerobic exercises daily and that the nervous system can return to normal functioning
@@jeremywades This may be true...but from the context of concussion, aerobic exercise is one of the best ways to recover. So we will always promote it. Also, inactivity can be a catalyst for POTS, so I would always recommend that someone who's worked so hard to get rid of it, to continue working to keep it away!
I got a head injury / concussion that put me out of working out and exercise for 5 months and now I have been diagnosed with POTS and I'm still trying to figure out my other health issues.
It's pretty annoying and I'm hoping my symptoms don't get much worse and my head is able to figure itself out. I have pretty normal blood pressure it's just my headrate jumps from 50-60 to 90-100.
holy moly I just got to the part where you said you can get POTS from stopping exercising and getting a concussion. It would be awesome if I get rid of this stuff!
I love you, you handsome internet doctor man!
Pretty sure this happened to me after a side swipe wreck out of the blue my legs would go dead at work and my concussion symptoms started 8 weeks after the wreck I just randomly started getting weak shakey jelly legs and odd sensory synptoms
I am trying to find out what to do when you have pots and have just been concussed? Is there any difference between the methods of recovery?
Anyone looked into underlying methemoglobemia (which can be easily treated with oral or IV methylene blue) in case concussion symptoms don't improve? 'pots' and methem. have very similar symptoms, and also comes down to blood oxygen transport inefficiency.
Nitrates cause progressive methemoglobemia, especially in rural America. There is a gigantic ammonia nitrate air concentration in the US centered in Iowa. Tap water is also often highly contaminated with nitrates from fertilizers.
I noticed said symptoms myself when I lived in rural US and reset my blood oxygen/cured it with a single dose of oral methylene blue.
(yes it will stain everything blue including your pee but it will go away. To neutralize spills you can use ascorbic acid powder. I just buy the popular fish version of mb, but that's just me and there are other options)
Can a person have high BP but also have POTS
I'm the poster child for this.
24:20
Increasing sodium intake is not good for all pots patients. If you happen to have hyper pots and you're one of those people whose blood pressure spikes sodium intake does not need to be increased. I am a hyper pots patient.
This is for concussion pots
Why do you say that the treatment for POTS is exercise? And does the cause of the POTS determine the treatment..... or will exercise work for most everyone?
Also.... excellent video !!!!! 😎👊😍
I say that the treatment is exercise because the treatment is exercise (among other things) - POTS is a form of dysautonomia - meaning a dysfunction of the autonomic nervous system. Exercise helps to regulate the autonomic nervous system (resting creates more dysfunction). There are other things that have to be done in conjunction with exercise, but yes, the protocol is fairly effective for most people
So I am a 26 year old male with POTS. I started getting symptoms about a month after having quite a bad concussion, I was getting better and had a attack of symptoms and now back to square one again.
Update bro?
@@TheBushRanger. what ?
@@LimaEchoEchoZz sorry lol how are you doing? I am in the same boat
@@TheBushRanger. oh sorry mate I was confused for a minute there.
I now have Oropharyngeal Dysphagia (difficulty swallowing) due to Autonomic Dysfunction (POTS) so it's incredibly hard for me to eat and drink without choking. I am now referred to Neurology pending investigations into a brain injury and other potential causes. I've had 2 Endoscopes put down my throat to check for cancer and structural defects, I've also had a barium swallow test and full torso CT scan as well as a CT brain scan done recently and everything is normal.
Hope you're well, keep fighting.
@@LimaEchoEchoZz sorry to hear that man. Do you still have POTs?
I got a severe concussion in February. I found out my heart rate was off over the summer because of the concussion. I went to physical therapy to try to control it. She released me and I guess it never fixed itself. My heart rate still to this day jumps on the low end 30 bpm and on the high end 50 bpm from rest to standing. Once I am standing, my heart rate can get all the way to 145 bpm just standing there. One time I was just sitting on the couch and decided to walk up the stairs and my heart rate got all the way to 165 bpm just walking up the stairs. I experience increased mild head pain upon standing from all of this, but that is about it. No other symptoms upon standing. Could this be POTS or something else? My physical therapist never mentioned POTS or anything.
How are you doing now?
@@TheBushRanger. Still dealing with all of my post concussion symptoms, but it’s just something I’ve gotten used to. Heart rate wise, I’m guessing it’s just a dysautonomia from my concussion because the cardiologist said I don’t have POTS.
@@t12194 your cardiologist said you don’t have pots even though your heart rate is going to 140 standing?
@@TheBushRanger. Sometimes it does. My heart rate is always high resting and always jumps very high from rest to standing. At least 30 bpm apart. Sometimes it can go to 140 while just standing but it fluctuates and can be lower like 130s, 120s or 110s too while I’m standing. But yes, my cardiologist said I don’t have POTS even though my HR can get that high sometimes while standing.
@@t12194 yeh bro that’s Pots. I’d be getting a second opinion asap
Benfotiamine, thiamine
kind of invalidating
No offense, but why would we be satisfied with managing POTS symptoms when so many people out there have complete recovery? Levine’s protocol May be better than nothing, but there are so many approaches out there that actually address the dysfunction in the autonomic nervous system. Standard medicine doesn’t do much for recovery, so don’t depend on it. Search RUclips for POTS recovery and you will find much more effective treatments and methods.
no offense but these types of measures are the first line of defense in any POTS case. Dysautonomia and Autonomic dysregulation is often completely cured with these types of measures...this is the treatment. The next line of defense is medication (which comes with a whole host of additional side-effects...and isn't really fixing any underlying cause)...
@@CompleteConcussions I was told about these management techniques and they helped only very minimally. For many people medication doesn’t help at all or makes them worse. Eventually I found a chiropractic neurologist who specializes in dysautonomia and I’ve had much better improvement since seeing him. I’m not saying don’t do the Levine protocol, just that there are other highly effective treatments that most doctors (when those who know about POTS) are unaware of. And maybe most importantly, doctors often tell POTS patients that the best they can do is manage it. This is terrible for a patient, especially since the nervous system is at the root of it.
@@becky6598 these treatments are actually addressing the issues with the autonomic nervous system. The way to address autonomic dysregulation is through these types of techniques. This isn't just living with symptoms...it's actually addressing the root underlying cause. There are a number of ways to do this however this protocol has evidence of effectiveness behind it and is a conglomeration of multiple strategies put together.