The only reason that I can walk again is Dr. Blair Grubb. I couldn't control my left leg, constantly falling, stumbling, walking into walls, unable to walk in a straight line. After confirming autoantibodies, Dr. Grubb put me on an immuno suppressant, and I can walk again. Every day, I am so very thankful that Dr. Grubb was willing to try something different. I saw more than 50+ doctors, most of them told me that I was just crazy. Some of these doctors were from The Mayo Clinic and Cleveland Clinic. More doctors should be like Dr. Grubb!
@@homemagar3670 I am not sure what that is, but I had two heart ablations. Dr. Grubb was the only doctor where I actually saw any improvement with my walking. He performed a miracle. I never thought I would walk straight again.
These are my personal opinions and thoughts and questions. The vagus nerve (the 10th cranial nerve) needs choline. Eggs are a rich source...They told us not to eat eggs... The brain needs sodium...We were told not to eat salt ( thanks BTW for adding aluminum as an anticaking agent) isnt salt also need for the chloride to make stomach acid for good digestion? We are told not to be out in the sun for more than 15 minutes. Dosent it take 15-20 minutes of being in the sun to start making vit.D. BTW, thanks for adding synthetic vit.D2 to the milk (why do they give us A1 milk instead of A2 milk) when our bodies need D3 and where is the vitamin K2 to help put the calcium in the bones where it should be stored instead of in the soft tissue or the arteries causing cardiovascular problems. (Statins and its effects on nutrient status are another story). D3 is one of the best anti-inflammatory compounds not to mention its an immume modulator and hormone precursor. To make it from sunlight you need cholesterol. Well its a good thing they lower that for us. But dosent the brain need it for proper function. Do some people need more than others due to genitics and because some viruses down regulate vit.D receptors? Why is folic acid added to foods when only around 50% of the population can convert it to the active form of folate? Sure the folate cycle not working creates downstream issues like problems with neurotransmitters, detoxification, energy production and many others. My recomendations are to keep studying.
From December 2021 - January 2022 I spent 45 days having SARS-CoV-2 strip life as I knew it away from me. 4-weeks in I passed out, there was no stopping it, I hit the floor and broke my left hip. All physicians I was seen by after I tested Negative (Primary Dr., Cardiologist, Pulmonologist, Neurologist, and ENT) did bare minimum/basic testing on me all agreeing There's NOTHING Wrong With Me. I fight to stay conscious every day, I have brain fog, don't dare exercise because I'm exhausted all the time, etc... etc. You are correct Dr. Grubb, physicians as a whole do not want to deal with this.
It may be good to start naming doctors who are dismissive and do the minimum... so others can avoid them. We had years of experience with this and take every opportunity not only to promote doctors who listen and work hard to get to the bottom of symptoms, but also to communicate to others about doctors who only do the minimum, by the book, and tend to be condescending/narcissistic in their "partnership" with patients.
They are unwilling to LEARN anything new , and most importantly , they are unwilling to EVEN TRY ! You can provide them with everything they need , and still they refuse to even try to help . But , if you let them , they are happy to supply any drugs ( without any evidence of safety or effectiveness ) that their brains conceive .
Well said. And I might add that the dismissive doctors also make a habit of telling patients who are suffering from POTS or experiencing POTS signs/symptoms that a psych referral is what is needed (“It might be anxiety”; “It’s most likely a panic attack”, etc). Is this what our medical schools here the U.S. have been teaching? If so, can we ever expect a change?
As a Chiari patient and someone about to go into medicine I find this fascinating! I’m only half way through but I noticed how the doctors who studied these conditions had a personal experience with them, whether it was their own or someone close to them.
Strange coincidence. I've watched this channel for a long time and previously saw a lecture by Dr.Holly Gilmer. When I walked into my chiari/medullary compression consultation. There she was. She preformed my decompression surgery in October 2020. Excellent Dr.
This was an incredible presentation. I was fascinated by the science and the linking in inflammatory cycles and autoimmune function. Thank you for acknowledging patients, like myself, that have struggled in a medical system that sometimes doesn’t know how to approach serious chronic health conditions. I lived 14 years undiagnosed with progressively deteriorating neurological function as a result of cranial cervical instability, Atlantoaxial instability, that eventually resulted in Atlantoaxial dislocation and a major surgery. It was by luck I found a physician who understood that symptoms like POTS and other neurological disfunction can have different root causes and found my diagnosis. Physicians like yourself with compassion, knowledge, and insight is so valuable. 🙏🏼
Not sure about that one, at least not in the patients that were talked about here. As the inflammation caused by the immune system with such high cytokines can be incomparably higher, it may just be like adding a drop to a full bucket. However, I definitely don't want to say something against anti-inflammatory diets nor keeping the microbiome on check. In not as severe cases it might definitely be worth a try, aswell preventatively should be a measure to be recommended.
had POTS since i was 11. i am now 23. i am so exhausted by this. my ana is positive but that’s all i’ve been told. now taking propranolol but it’s hardly touching my tachycardia. praying for more research.
Might be Elhers Danlos Syndrome-caused. You can have mild POTS all of your life with it and reasonably significant symptoms can begin at 11, even if you get more symptoms much later on
@@danaking3568 I went to a rheumatologist, and they did absolutely nothing about it. Still taking the propranolol, but I still have tachycardia… Also started taking modafinil to help with extreme exhaustion and brain fog.
IMO there are some good MD's that continue to educate themselves, there are even fewer that really take the time to really troubleshoot and find the root cause vs treat random seemingly unrelated symptoms. I am wondering if the majority of MD's ever learned about "the Flexner report" in their history class.
Voltaire was wise enough to know that there is a divine intelligence. He only disagreed that the Creator cares/ intervenes due to the troubles he saw in the world. We always receive new information from two perspectives. 1. With the intention for absolute truth, despite the cost to ego and comfort. 2. To confirm a world view we hold. These parts of the body are interdependent, they did not gradually occur from randomness or gases. I wish we could at least see the medical /science community admit that these intricate systems are clearly a result of advanced intelligence. I do appreciate this man. He has a wonderful approach to discovery and a willingness to remain a student. This approach is how cures are discovered/ lives are saved. (His daughters contributions to this presentation were helpful.)
The "you must be crazy" joke isn't funny for a lot of POTS patients who have been through medical trauma and expert denial. You are a great and engaging speaker as well as an extremely knowledgable physician but please be mindful that patients will be watching this too and have some sensitivity towards the trauma we as a group have experienced while trying to get help. Imagine if you suddenly couldn't think while in an upright position, and couldn't function as you once had (putting your career on the line) and while trying to save your life for the sake of your family and kids, continue to get dismissed, called "crazy", diagnosed with Munchousin Syndrome ( I am not kidding, this was pre-tilt table test obviously), told you need to exercise more, even reduce your sodium content. It was a NIGHTMARE and still is but the gaslighting and dismissal made it unbearable and I still suffer from serious anxiety associated with it. Thank you for your in-depth knowledge on the topic. The POTS community appreciates doctors like you.
As a patient of Dr. Grubb, I can tell you he is the most compassionate doctor I have ever seen. He would never gaslight a patient. I mean how many of us have been told that but I don't think he is using it in a derogatory way.
This unknown medical condition is no joke and I’m praying the progress on finding answers continue. I personally suffered from Dysautonomia badly for 2 years which was complete torture. Brain retraining healed me but sadly after about 2 years of being healed, the high HR and palpitations have made a grand reappearance. I’m just so tired of this…
The next video scrolling down is MCAS,POTS,EDS triad. Do other people have these issues in conjunction with each other? I HAD ) past tence), MCAS, and some joint -cartilage issues, blurry vision in the mornings and some vertigo at times getting up to walk, and tinnitus(ear ringing).
I had a surgery to hold up my bladder. A great success, but the very next day I got my very first gallbladder attack. It was removed, but the urologist (surgeon) didn’t believe it was related. Now thinking about the autonomic system, could the bladder surgery and nerve disruptions trigger a reaction in the gallbladder??
Besides 2 forms of EDS, there is a CAPS diagnosis of NLRP3 mutation. I wish my teen could see you. But only has Medicaid. Heart is going to 140 to 160. Pupils get huge, one bigger than the other. Is getting really hurt with falls, hitting head, really hurt her back falling this week. Doctors treat her like garbage and it is all about being overweight. Desperate parent needing help. Especially, since suicide is talked about a lot now. Always saying she wants help and isn't getting it from doctors. You as a doctor sound like you get it. Been doing this for years.
There are good doctors out there, that know what they're talking about in regards to POTS and EDS. They can be hard to come across but you only need to find one, that you can get to. I would recommend trying to find as many places and seeing what they do + calling them and asking the reception if they have experience treating people with dysautonomia / POTS, and EDS. Sometimes going through General Practise doctors can be a stuck loop. If they don't know about EDS / POTS then they almost definitely won't know of specialists that do. I think it sometimes is better to do the searching your own self and once you've found some that have potential, brining it to a doctor that can refer you (two), or just finding a General Practise doctor that is in the know that can get you to a POTS field-competent specialist. I would recommend looking at helping her with seeing specialists for mental health if that is something that can happen; mental health especially in those times can be essential, and if you're waiting and waiting to find a problem-solving doctor it might be very worth it. Apologies for the reply on an old comment, just thought any help I might be able to give would be worth doing the reply for. Wish/hope for you all the best.
I've had lupus for 20 years. Two years ago, I had a successful cardiac ablation. This, as expected, set off a lupus flare. 3 weeks later, I developed PoTS and have had it for 2 years now. Im practically bedridden.
My daughter is suffering with this. All the research I've done and searching for physicians who treat POTS close to where we live and there's a 2+ year wait list. Very disheartening as a mother not to be able to help my daughter.
I wish I could get my Pots, autonomic nervous system problems under control. My upper body is constantly inflamed and when I move my heart palpatates like crazy and causes me to be out of breath quick. Conventional drs just ignore test results that prove this.
I have a syrinx at level C1-C6 and I'm starting to develop swelling in the neck and numbness in the face. I have developed hypotension a feeling of squeezing in the brain 🧠 and tachycardia with difficulty breathing at time
@@Sara-world I'm going for a brain and Cervical Spine scan in 17 days to see if the syrinx has gotten bigger which might be the cause of my latest complications...will keep everyone posted
I had gastric sleeve and got this within a month. I just thought it was from lack of calories. Still have it 1 yr later and have fainting. Could something in my stomach been cut or is it lack of of change to microbiome in my stomach? This is crazy. Did surgery promote autoimmune issues? How can we turn it off. I take lots of vitamins.
I’ve been searching out a cure for a two year battle with chronic diarrhea. I’ve tried and ruled out everything. Have you had success with this symptom with people diagnosed with Dysautonomia. Dismotility. No constipation. Even cholestyramine isn’t working. I am having episodes during the night and even fasting doesn’t stop it.
I just found 2 absolutely amazing things for this! Oh and btw...what that ^ person said is true - ie dairy and gluten are the usual suspects - and are worth stopping. But these 2 products I came across just by 'accident' (via Dr Nemechek's protocol for POTS online) and by fluke, they took down my inflammation SO much - and totally stopped my diarrhoea/Crohn's flare in its tracks were: 1) Inulin power (made from Jerusalem artichokes) And... 2) Bioclinic Naturals Opti DHA/EPA Plus SPM (Concentrated fish omega-3 triglycerides). - Very anti inflammatory! ^ Those things ^ should sort you out almost asap! No joke, 3 days taking them - and by the 3rd day, my diarrhea and ulcers/blood had all gone. Good luck - let me know how you go?! Oh and BTW, a really good trick is to freeze your fish oil capsules - because that way when you take them, they won't repeat on you because they 'open up' further on down the GI tract 😉😊
@143LoveConquersAll I have inulin powder in. Just to add to your amazing recommendations. L-Glutamine and Melatonin would also reduce bpm by so many points. Backed up by NIH research.
I have heard about Heart Rate Variability testing for ANS dysfunction for decades. How is it not mainstream by now? That tilt test is barbaric when positive.
I have chiari malformation and my sister and my mom does and I am the only one who has had the decompression surgery and I have a question for you if someone who had the decompression surgery and if that person had sezure after there surgery can they later on in life have absent sezure
Oh dear I do wish Dr Grubb hadn't almost killed me through being so careless. And he's not the only doctor either - I can forgive, but it does hurt when they worsen your health badly, & get away with it completely.... and you see them still making major money like this...... they can't even give you $1 in compensation of disabling you for life. oh well. I hope they truly help some people that's all. I can't listen to it without all the memories coming back, especially how he finds everything quite amusing
I am sympathetic to your plight. I also have experienced the gross incompetence and corruption of the amERRORican healthcare system. He certainly doesn't have a good bedside manner. My friend Ty that passed away use to say people don't care until it happens to them. I hope all the doctors that caused harm to you and me and all their other patients get what they gave.
@@Sara-world See his Np Bev she is just as smart and is renowned in Pots research too. Once you are in with his NP, it is easier to get in with him because you are essentially his patient.
@@aliciadaugherty9252 I actually flew to Ohio to see bev. She was awesome and confirmed the diagnosis. First time a provider knew exactly what to do when I started convulsing in front of her. She's amazing, but my insurance sent me a notice letting me know this provider wouldn't be covered anymore after only one visit. I hate insurance cos!
They said he was compassionate but I guess not in his talks; “peeing all over herself”, “graph event that happened when she hit the floor”. I guess as a POTS patient, I’m kind of tired of doctors treating us like a joke.
I used to be a criminal defense attorney. We cracked jokes about the client's characteristics I ran into all of the time. It is for daily life and is stressful, you make jokes to lighten the work, but that didn't mean I wasn't extremely dedicated to each of my clients. It is stressful to live with these conditions every day. It is also stressful to try to treat or help complex people every day.
Why are you in ohio? My daughters Dr, Dr. Julian M Stewart talked about you often. Dr Stewart retired. Then Irfan Warsy took over then went to Conn. leaving no Doctor treating POTS..can’t get prescriptions, found old Corlanor which seems to be working at the moment. Her Neurologywas in a car accident and not returning to work. We are devastated. This unethical. She is allergic to beta blockers.
The only reason that I can walk again is Dr. Blair Grubb. I couldn't control my left leg, constantly falling, stumbling, walking into walls, unable to walk in a straight line. After confirming autoantibodies, Dr. Grubb put me on an immuno suppressant, and I can walk again. Every day, I am so very thankful that Dr. Grubb was willing to try something different. I saw more than 50+ doctors, most of them told me that I was just crazy. Some of these doctors were from The Mayo Clinic and Cleveland Clinic. More doctors should be like Dr. Grubb!
Do you have syrinx? And which surgery you had?
May I ask the name of the immunosuppressant?
@@davep7456 I take 300 mg of hydroxychloroquine daily.
@@homemagar3670 I am not sure what that is, but I had two heart ablations. Dr. Grubb was the only doctor where I actually saw any improvement with my walking. He performed a miracle. I never thought I would walk straight again.
These are my personal opinions and thoughts and questions. The vagus nerve (the 10th cranial nerve) needs choline. Eggs are a rich source...They told us not to eat eggs... The brain needs sodium...We were told not to eat salt ( thanks BTW for adding aluminum as an anticaking agent) isnt salt also need for the chloride to make stomach acid for good digestion? We are told not to be out in the sun for more than 15 minutes. Dosent it take 15-20 minutes of being in the sun to start making vit.D. BTW, thanks for adding synthetic vit.D2 to the milk (why do they give us A1 milk instead of A2 milk) when our bodies need D3 and where is the vitamin K2 to help put the calcium in the bones where it should be stored instead of in the soft tissue or the arteries causing cardiovascular problems. (Statins and its effects on nutrient status are another story). D3 is one of the best anti-inflammatory compounds not to mention its an immume modulator and hormone precursor. To make it from sunlight you need cholesterol. Well its a good thing they lower that for us. But dosent the brain need it for proper function. Do some people need more than others due to genitics and because some viruses down regulate vit.D receptors? Why is folic acid added to foods when only around 50% of the population can convert it to the active form of folate? Sure the folate cycle not working creates downstream issues like problems with neurotransmitters, detoxification, energy production and many others. My recomendations are to keep studying.
You summed that up perfectly
From December 2021 - January 2022 I spent 45 days having SARS-CoV-2 strip life as I knew it away from me. 4-weeks in I passed out, there was no stopping it, I hit the floor and broke my left hip. All physicians I was seen by after I tested Negative (Primary Dr., Cardiologist, Pulmonologist, Neurologist, and ENT) did bare minimum/basic testing on me all agreeing There's NOTHING Wrong With Me. I fight to stay conscious every day, I have brain fog, don't dare exercise because I'm exhausted all the time, etc... etc. You are correct Dr. Grubb, physicians as a whole do not want to deal with this.
It may be good to start naming doctors who are dismissive and do the minimum... so others can avoid them. We had years of experience with this and take every opportunity not only to promote doctors who listen and work hard to get to the bottom of symptoms, but also to communicate to others about doctors who only do the minimum, by the book, and tend to be condescending/narcissistic in their "partnership" with patients.
I think they don’t is bc they don’t know and bc the patient brings the info
They are unwilling to LEARN anything new , and most importantly , they are unwilling to EVEN TRY !
You can provide them with everything they need , and still they refuse to even try to help .
But , if you let them , they are happy to supply any drugs ( without any evidence of safety or effectiveness ) that their brains conceive .
Well said. And I might add that the dismissive doctors also make a habit of telling patients who are suffering from POTS or experiencing POTS signs/symptoms that a psych referral is what is needed (“It might be anxiety”; “It’s most likely a panic attack”, etc). Is this what our medical schools here the U.S. have been teaching? If so, can we ever expect a change?
As a Chiari patient and someone about to go into medicine I find this fascinating! I’m only half way through but I noticed how the doctors who studied these conditions had a personal experience with them, whether it was their own or someone close to them.
I absolutely Love Dr.Grubb! He saved my life and is the best doctor on the planet period!!
Strange coincidence. I've watched this channel for a long time and previously saw a lecture by Dr.Holly Gilmer. When I walked into my chiari/medullary compression consultation. There she was. She preformed my decompression surgery in October 2020. Excellent Dr.
Where is she located please ?
This was an incredible presentation. I was fascinated by the science and the linking in inflammatory cycles and autoimmune function.
Thank you for acknowledging patients, like myself, that have struggled in a medical system that sometimes doesn’t know how to approach serious chronic health conditions. I lived 14 years undiagnosed with progressively deteriorating neurological function as a result of cranial cervical instability, Atlantoaxial instability, that eventually resulted in Atlantoaxial dislocation and a major surgery. It was by luck I found a physician who understood that symptoms like POTS and other neurological disfunction can have different root causes and found my diagnosis. Physicians like yourself with compassion, knowledge, and insight is so valuable. 🙏🏼
Dr Grubb was my doc for almost 10 years. He is an awesome person.
I fell in love with this presentation, just amazing! All the mechanisms and everything. Makes me love the nervous system even more!
Sounds like an anti-inflammatory diet and getting your gut microbiome in check would be greatly beneficial as well....Appreciate the Knowledge!
Not sure about that one, at least not in the patients that were talked about here.
As the inflammation caused by the immune system with such high cytokines can be incomparably higher, it may just be like adding a drop to a full bucket.
However, I definitely don't want to say something against anti-inflammatory diets nor keeping the microbiome on check.
In not as severe cases it might definitely be worth a try, aswell preventatively should be a measure to be recommended.
had POTS since i was 11. i am now 23. i am so exhausted by this. my ana is positive but that’s all i’ve been told. now taking propranolol but it’s hardly touching my tachycardia. praying for more research.
Might be Elhers Danlos Syndrome-caused. You can have mild POTS all of your life with it and reasonably significant symptoms can begin at 11, even if you get more symptoms much later on
Did you see a rheumatologist about the ANA? My daughter has had symptoms since age 10 and now +ANA.
@@danaking3568 I went to a rheumatologist, and they did absolutely nothing about it. Still taking the propranolol, but I still have tachycardia… Also started taking modafinil to help with extreme exhaustion and brain fog.
Same ANA+ but have gotten nowhere.. definitely have POTs
Check for underlying Bartonella or Lyme
IMO there are some good MD's that continue to educate themselves, there are even fewer that really take the time to really troubleshoot and find the root cause vs treat random seemingly unrelated symptoms. I am wondering if the majority of MD's ever learned about "the Flexner report" in their history class.
Voltaire was wise enough to know that there is a divine intelligence. He only disagreed that the Creator cares/ intervenes due to the troubles he saw in the world. We always receive new information from two perspectives. 1. With the intention for absolute truth, despite the cost to ego and comfort. 2. To confirm a world view we hold. These parts of the body are interdependent, they did not gradually occur from randomness or gases. I wish we could at least see the medical /science community admit that these intricate systems are clearly a result of advanced intelligence. I do appreciate this man. He has a wonderful approach to discovery and a willingness to remain a student. This approach is how cures are discovered/ lives are saved. (His daughters contributions to this presentation were helpful.)
The "you must be crazy" joke isn't funny for a lot of POTS patients who have been through medical trauma and expert denial. You are a great and engaging speaker as well as an extremely knowledgable physician but please be mindful that patients will be watching this too and have some sensitivity towards the trauma we as a group have experienced while trying to get help.
Imagine if you suddenly couldn't think while in an upright position, and couldn't function as you once had (putting your career on the line) and while trying to save your life for the sake of your family and kids, continue to get dismissed, called "crazy", diagnosed with Munchousin Syndrome ( I am not kidding, this was pre-tilt table test obviously), told you need to exercise more, even reduce your sodium content. It was a NIGHTMARE and still is but the gaslighting and dismissal made it unbearable and I still suffer from serious anxiety associated with it.
Thank you for your in-depth knowledge on the topic. The POTS community appreciates doctors like you.
As a patient of Dr. Grubb, I can tell you he is the most compassionate doctor I have ever seen. He would never gaslight a patient. I mean how many of us have been told that but I don't think he is using it in a derogatory way.
I don't think it was meant as a joke. He's just repeating what his patients are being told by other so called medical professionals.
This unknown medical condition is no joke and I’m praying the progress on finding answers continue.
I personally suffered from Dysautonomia badly for 2 years which was complete torture. Brain retraining healed me but sadly after about 2 years of being healed, the high HR and palpitations have made a grand reappearance. I’m just so tired of this…
DO you also have brachyardia at night?
@@ryans1623 No. never experienced that.
I feel like I have the flu all the time! This is really getting on my nerves and I try so hard not to complain but enough already!
The next video scrolling down is MCAS,POTS,EDS triad. Do other people have these issues in conjunction with each other? I HAD ) past tence), MCAS, and some joint -cartilage issues, blurry vision in the mornings and some vertigo at times getting up to walk, and tinnitus(ear ringing).
Wow, only the worlds expert!
Thank you for sharing this presentation!
I had a surgery to hold up my bladder. A great success, but the very next day I got my very first gallbladder attack. It was removed, but the urologist (surgeon) didn’t believe it was related. Now thinking about the autonomic system, could the bladder surgery and nerve disruptions trigger a reaction in the gallbladder??
That's a good question and I believe so because I had gallbladder surgery and a week later developed severe bladder issues
Wow! That really sucks for you guys! ^ I'm so sorry to hear that that happened to you 😞
Besides 2 forms of EDS, there is a CAPS diagnosis of NLRP3 mutation. I wish my teen could see you. But only has Medicaid. Heart is going to 140 to 160. Pupils get huge, one bigger than the other. Is getting really hurt with falls, hitting head, really hurt her back falling this week. Doctors treat her like garbage and it is all about being overweight. Desperate parent needing help. Especially, since suicide is talked about a lot now. Always saying she wants help and isn't getting it from doctors. You as a doctor sound like you get it. Been doing this for years.
There are good doctors out there, that know what they're talking about in regards to POTS and EDS. They can be hard to come across but you only need to find one, that you can get to. I would recommend trying to find as many places and seeing what they do + calling them and asking the reception if they have experience treating people with dysautonomia / POTS, and EDS. Sometimes going through General Practise doctors can be a stuck loop. If they don't know about EDS / POTS then they almost definitely won't know of specialists that do. I think it sometimes is better to do the searching your own self and once you've found some that have potential, brining it to a doctor that can refer you (two), or just finding a General Practise doctor that is in the know that can get you to a POTS field-competent specialist. I would recommend looking at helping her with seeing specialists for mental health if that is something that can happen; mental health especially in those times can be essential, and if you're waiting and waiting to find a problem-solving doctor it might be very worth it. Apologies for the reply on an old comment, just thought any help I might be able to give would be worth doing the reply for. Wish/hope for you all the best.
Prayers for your daughter from me. I hope she gets the help that she needs asap!
I've had lupus for 20 years. Two years ago, I had a successful cardiac ablation. This, as expected, set off a lupus flare. 3 weeks later, I developed PoTS and have had it for 2 years now. Im practically bedridden.
I’m really sorry to hear that, my thoughts are with you
So am I (sorry to hear it ^). That's absolutely awful and so unfair. Wishing and sending you healing 🙏
thank you so much for your work, i would love to be in a study i am so much sufferieng from this
My daughter is suffering with this. All the research I've done and searching for physicians who treat POTS close to where we live and there's a 2+ year wait list. Very disheartening as a mother not to be able to help my daughter.
I wish I could get my Pots, autonomic nervous system problems under control. My upper body is constantly inflamed and when I move my heart palpatates like crazy and causes me to be out of breath quick. Conventional drs just ignore test results that prove this.
I have a syrinx at level C1-C6 and I'm starting to develop swelling in the neck and numbness in the face. I have developed hypotension a feeling of squeezing in the brain 🧠 and tachycardia with difficulty breathing at time
I have the similar symptoms. My brain feels numb at times and my face spasms. It's awful.
@@Sara-world I'm going for a brain and Cervical Spine scan in 17 days to see if the syrinx has gotten bigger which might be the cause of my latest complications...will keep everyone posted
@@ladycontessa1 How are you doing?
What is syrinx ?
Ashleigh?
I had gastric sleeve and got this within a month. I just thought it was from lack of calories. Still have it 1 yr later and have fainting. Could something in my stomach been cut or is it lack of of change to microbiome in my stomach? This is crazy. Did surgery promote autoimmune issues? How can we turn it off. I take lots of vitamins.
I’ve been searching out a cure for a two year battle with chronic diarrhea. I’ve tried and ruled out everything. Have you had success with this symptom with people diagnosed with Dysautonomia. Dismotility. No constipation. Even cholestyramine isn’t working. I am having episodes during the night and even fasting doesn’t stop it.
Stop all milk
I just found 2 absolutely amazing things for this!
Oh and btw...what that ^ person said is true - ie dairy and gluten are the usual suspects - and are worth stopping.
But these 2 products I came across just by 'accident' (via Dr Nemechek's protocol for POTS online) and by fluke, they took down my inflammation SO much - and totally stopped my diarrhoea/Crohn's flare in its tracks were:
1) Inulin power (made from Jerusalem artichokes)
And...
2) Bioclinic Naturals Opti DHA/EPA Plus SPM (Concentrated fish omega-3 triglycerides).
- Very anti inflammatory! ^
Those things ^ should sort you out almost asap!
No joke, 3 days taking them - and by the 3rd day, my diarrhea and ulcers/blood had all gone.
Good luck - let me know how you go?!
Oh and BTW, a really good trick is to freeze your fish oil capsules - because that way when you take them, they won't repeat on you because they 'open up' further on down the GI tract 😉😊
@143LoveConquersAll I have inulin powder in. Just to add to your amazing recommendations. L-Glutamine and Melatonin would also reduce bpm by so many points. Backed up by NIH research.
I have heard about Heart Rate Variability testing for ANS dysfunction for decades. How is it not mainstream by now? That tilt test is barbaric when positive.
I have chiari malformation and my sister and my mom does and I am the only one who has had the decompression surgery and I have a question for you if someone who had the decompression surgery and if that person had sezure after there surgery can they later on in life have absent sezure
Oh dear I do wish Dr Grubb hadn't almost killed me through being so careless. And he's not the only doctor either - I can forgive, but it does hurt when they worsen your health badly, & get away with it completely.... and you see them still making major money like this...... they can't even give you $1 in compensation of disabling you for life. oh well. I hope they truly help some people that's all. I can't listen to it without all the memories coming back, especially how he finds everything quite amusing
I am sympathetic to your plight. I also have experienced the gross incompetence and corruption of the amERRORican healthcare system. He certainly doesn't have a good bedside manner. My friend Ty that passed away use to say people don't care until it happens to them. I hope all the doctors that caused harm to you and me and all their other patients get what they gave.
What happened?
This reply is astonishing! I do hope that you have found some resolution. Mega prayers
Excellent lecture! What's the medicine mentioned at 51:55 ?
No idea. Something like clubzara?
Sarilumab (Kevzara)
Do you help ppl with MCAS possible POTS and Stenosis? 45 and dont ro go back to a wheelchair.
How can I talk to this doctor?
2 year wait
Google him.
@@robc418 yeah I saw that too. Was pretty sad to see he's impossible to get an appt with.
@@Sara-world See his Np Bev she is just as smart and is renowned in Pots research too. Once you are in with his NP, it is easier to get in with him because you are essentially his patient.
@@aliciadaugherty9252 I actually flew to Ohio to see bev. She was awesome and confirmed the diagnosis. First time a provider knew exactly what to do when I started convulsing in front of her. She's amazing, but my insurance sent me a notice letting me know this provider wouldn't be covered anymore after only one visit. I hate insurance cos!
So is this to say your guaranteed to get MS if you have pots? :( also how do you test for auto immune diseases
They said he was compassionate but I guess not in his talks; “peeing all over herself”, “graph event that happened when she hit the floor”. I guess as a POTS patient, I’m kind of tired of doctors treating us like a joke.
He's one of the only ones trying. It's job for them. You know that saying "you gotta laugh to keep from crying."
@@Siamese_lps1763
Yes, when WE make the joke. They don’t know what it’s like to live like this every second of every day.
I used to be a criminal defense attorney. We cracked jokes about the client's characteristics I ran into all of the time. It is for daily life and is stressful, you make jokes to lighten the work, but that didn't mean I wasn't extremely dedicated to each of my clients. It is stressful to live with these conditions every day. It is also stressful to try to treat or help complex people every day.
@Princess Mari
I’m not offended, and I don’t have “a negative attitude”. POTS patients are extremely ill. I do t find these descriptions funny.
@@gwennyrj
But your clients don’t suffer. 24/7
That God created
Why are you in ohio? My daughters Dr, Dr. Julian M Stewart talked about you often. Dr Stewart retired. Then Irfan Warsy took over then went to Conn. leaving no Doctor treating POTS..can’t get prescriptions, found old Corlanor which seems to be working at the moment. Her Neurologywas in a car accident and not returning to work. We are devastated. This unethical. She is allergic to beta blockers.