As a 36-year-old brown-skinned patient with Hyperadrebergic POTS (MCA), I thank you for spreading awareness. Especially for those of us adults with Dysautonomia/POTS who won't be outgrowing this condition and need the public to understand that for most of us (adults) it us incurable and comes hand in hand with other Dysautonomias like Gastroparesis, Pure Autonomic Failure and other "progressive" and dibilitating forms and so forth. I'm not deconditioned and live a very altered, disabled life.
Well said! I have hyperadrenergic POTS and gastroparesis as well, caused by hypermobile type Ehlers Danlos syndrome. My dysautonomia specialist prescribed me the emerging repurposed medication Pyridostigmine to treat both my POTS and gastroparesis with a single medication, and it's been an absolute miracle for me. Hoping your doctors have found effective treatment options for you, too!
@@Dulcimerist check if you dont have hyperlaxity...it is often linked to POTS and MCAS.Injection of vitamin C and vitamin D ampoules help a lot and quercitine +antiH1
I knew that I had pots. I also have Ehlers Danlos Syndrome. But the typical pots symptoms didn't quite match me. This gives me to much relief understanding that there are different types of pots!
I was born with POTS and have had it all my life and I am 57... people think it's from Lyme disease, etc. But I prefer to listen to my doctor and not people who believe they are...
My daughter never had Lyme Disease. She has been tested for EVERYTHING and her issues with POTS came on very slowly to completely stuck in bed some days. She is wheelchair half the time now also. We think she also now has EDS, as those symptoms just began to show.
Ehlers Danlos syndrome is well-known for causing POTS, and has the potential to cause many other issues. Hoping your daughter has been screened to determine whether or not she has one of the 13 different types of EDS, or a related condition; and that she is doing much better by now.
Hi Jalynn, I was diagnosed with POTS at Mayo Clinic in 2003 (onset age 15), it has been a total of twelve years since onset and at this point I have not "grown out of it". According to your interview, which I found to be very informative, I believe I am part of the subtype Hyperadrenegic (MCA). I have found it very difficult to find help from the local medical community where I live, even after my official diagnosis. Is this something you have experienced? I would love to speak with you further
This is a common experience, since many doctors don't know how to treat this type of POTS. Medications that are commonly given to treat orthostatic hypotension are often prescribed by them, and can cause problems, such as Midrodrine - which stimulates a portion of the adrenergic receptors, which are already overstimulated and overly sensitive in hyperadrenergic POTS patients. Medications which dampen the activity of adrenergic receptors - Atenolol or Propranolol, Clonidine or Guanfacine, and to a lesser extent Doxazosin or Prazosin - are typically used to treat hyperadrenergic POTS, but don't make sense when treating basic orthostatic hypotension/intolerance. As a result, those doctors won't even prescribe the medications which treat hyperadrenergic POTS. A couple of other POTS treatment options include Ivabradine (doesn't lower blood pressure) or Pyridostigmine (also treats gastroparesis and constipation). Hopefully you can find a good doctor who stays up to date on dysautonomia, and can work with you to find which treatment option works best for you as a unique individual patient.
Is there are a release of the findings yet? It sounds very much like my symptoms. And are there specialists in Germany? Thanks so much for an answer. 🤗
Gary Engleman this is a grown up educated group of individuals that are more learned than you.Please show proper humility and gratitude...you are spreading abuse STOP! Yes, Lymes disease is a mess,but it is not the ONLY cause for these symptoms. Help everyone by opening your mind for knowledge.Thank you.
I have POTS and have repeatedly tested negative for Lyme Disease. I do have autonomic neuropathy, however, of unclear etiology. Viral etiology has been suggested, along with possible MCA, and of course the dreaded autoimmune theory (which does seem plausible since I have been diagnosed with other autoimmune disorders). But, point being: No Lyme Disease. It seems a bit short-sighted to assume that all POTS cases are from Lyme disease, don't you think?
Yeah, Ehlers Danlos syndrome and related collagen-based disorders are notorious for causing POTS. These are genetic conditions that people are just born with. I was born with hypermobile type Ehlers Danlos syndrome, and started getting POTS symptoms at age nine. My POTS got much worse after puberty. People with Ehlers Danlos syndrome are often misdiagnosed with Lyme disease, unfortunately.
I went to your website and you are a very mature and strong person. You have gone through alot and you still push. May God continually bless and keep you. I pray you are now having more better days!!!
I'm confused . First of all says a group have hyperadrenergic pots and that they have typically high blood pressures and then states a subgroup of the hyperadrenergic group have mast cell disorders with typically low blood pressures . . . . .
There’s different types of Hyperadrenergic POTS!! There are some with High Blood Pressure, Low Blood Pressure, and Central, which doesn’t have any affect on Blood Pressure!! That’s what I have!! Hope that helps!! Lol
It is commonly known now there are several possible causes for pots. Lyme is one. In my husband's case, his is due from EDS/hyper mobility syndrome. www.dysautonomiainternational.org/ is an excellent resource in learning about POTS and other forms of Dysautonomia. They do a great job of staying on top of the latest research too. dysautonomiaadvocacyfoundation.org/ is another great resource. Both of these organizations also have an informative and very active social media feed on facebook and twitter. I recommend checking them both out.
Young lady...Thank you for doing this interview on Hyper Adreneric Pots. I have this with MCAS and it really is like a roller coster ride. I take all those things the doctor mentioned and I have recently found oral cromolyn sodium very helpful.
She has the sweetest voice. I believe I have had this three separate times in the past thirty years. I have found the H1H and 2 antagonist to be useful in addition to mast cell stabilizers which include Quercitin and vitamin C and I go to the gym every day. If I don’t follow this protocol I end up in the emergency room with tachycardia and extremely elevated blood pressure from the histamine. I also do intermittent fasting, even OMAD when necessary to keep my histamine bucket from overflowing. I still have issues after eating but they’re short lasting and the rest of my life is functional. Get a Dutch urine Assay test and have your adrenals checked. This illness can be completely debilitating but there are things you can do to at least make you functional. My love and best wishes to all of you suffering from this hideous illness.
Great Video ! Amazing patients & the few RARE Amazing Drs...like Dr Grubb & Dr Kinsela & Dr Gupta!! We need more research on the SLC 6A2 gene and POTS !!
Finally someone says something about the other symptoms.. there's more to it! 😉 every time I have to text or make a phone call.. My heart goes up to mach 75. Nobody understands!
That's how I used to be, before my doctors finally gave me the right medications to treat my hyperadrenergic POTS. Hoping your doctors have found the treatment options that work best for you as well. I take either Guanfacine or Clonidine before bed. This type of medication treats hyperadrenergic POTS by signalling the body not to dump so much norepinephrine and adrenaline into circulation, which in turn calms the "fight or flight" panic and anxiety response. I also take Pyridostigmine during the day, which further treats my POTS and also treats my gastroparesis and chronic constipation.
i have the first pots that Dr.Blair described i have had lots of problems passing out walking etc and i have been trying to get help and for some reason i have been declined at the mayo clinic and am now waiting for Dr.Blair to see me to hopefully help me feel better
I was bitten by some insect(s) and developed this and some autoimmune issues. Lyme and or co-infections? The current testing for Borrelia species in not adequate in NY. They test for just one of the several that are know to inhabit this area, and moreover, there are Euro variants to be concerned with. I am sure there are several causes. However, I find that most MDs are interested in treating symptoms and find causality - unless is leads to more long term drugs and visits.
What are you talking about?! You have POTS and you are not Orthostatic? Great... Please just shut up. We are many in our family with symptoms of POTS and all of us with dysautonomia also have EHLERS-DANLOS SYNDROME! Our EDS is the cause of our POTS! Also, we have mast cell problem, in fact, my son is even diagnosed with Mastocytosis, not only MCAS.
As a 36-year-old brown-skinned patient with Hyperadrebergic POTS (MCA), I thank you for spreading awareness. Especially for those of us adults with Dysautonomia/POTS who won't be outgrowing this condition and need the public to understand that for most of us (adults) it us incurable and comes hand in hand with other Dysautonomias like Gastroparesis, Pure Autonomic Failure and other "progressive" and dibilitating forms and so forth.
I'm not deconditioned and live a very altered, disabled life.
Well said! I have hyperadrenergic POTS and gastroparesis as well, caused by hypermobile type Ehlers Danlos syndrome. My dysautonomia specialist prescribed me the emerging repurposed medication Pyridostigmine to treat both my POTS and gastroparesis with a single medication, and it's been an absolute miracle for me. Hoping your doctors have found effective treatment options for you, too!
@@Dulcimerist check if you dont have hyperlaxity...it is often linked to POTS and MCAS.Injection of vitamin C and vitamin D ampoules help a lot and quercitine +antiH1
Ma’am thank you so much for this interview.
I knew that I had pots. I also have Ehlers Danlos Syndrome. But the typical pots symptoms didn't quite match me. This gives me to much relief understanding that there are different types of pots!
I was born with POTS and have had it all my life and I am 57... people think it's from Lyme disease, etc. But I prefer to listen to my doctor and not people who believe they are...
Mary Lou Gross I believe I have had this since birth also. 43yrs
You have a good doc it sounds like. Lyme disease is a crackpot disease for the most part
My daughter never had Lyme Disease. She has been tested for EVERYTHING and her issues with POTS came on very slowly to completely stuck in bed some days. She is wheelchair half the time now also. We think she also now has EDS, as those symptoms just began to show.
Ehlers Danlos syndrome is well-known for causing POTS, and has the potential to cause many other issues. Hoping your daughter has been screened to determine whether or not she has one of the 13 different types of EDS, or a related condition; and that she is doing much better by now.
Hi Jalynn,
I was diagnosed with POTS at Mayo Clinic in 2003 (onset age 15), it has been a total of twelve years since onset and at this point I have not "grown out of it". According to your interview, which I found to be very informative, I believe I am part of the subtype Hyperadrenegic (MCA). I have found it very difficult to find help from the local medical community where I live, even after my official diagnosis. Is this something you have experienced? I would love to speak with you further
This is a common experience, since many doctors don't know how to treat this type of POTS. Medications that are commonly given to treat orthostatic hypotension are often prescribed by them, and can cause problems, such as Midrodrine - which stimulates a portion of the adrenergic receptors, which are already overstimulated and overly sensitive in hyperadrenergic POTS patients. Medications which dampen the activity of adrenergic receptors - Atenolol or Propranolol, Clonidine or Guanfacine, and to a lesser extent Doxazosin or Prazosin - are typically used to treat hyperadrenergic POTS, but don't make sense when treating basic orthostatic hypotension/intolerance. As a result, those doctors won't even prescribe the medications which treat hyperadrenergic POTS.
A couple of other POTS treatment options include Ivabradine (doesn't lower blood pressure) or Pyridostigmine (also treats gastroparesis and constipation). Hopefully you can find a good doctor who stays up to date on dysautonomia, and can work with you to find which treatment option works best for you as a unique individual patient.
Is there are a release of the findings yet? It sounds very much like my symptoms. And are there specialists in Germany? Thanks so much for an answer. 🤗
Gary Engleman this is a grown up educated group of individuals that are more learned than you.Please show proper humility and gratitude...you are spreading abuse STOP! Yes, Lymes disease is a mess,but it is not the ONLY cause for these symptoms. Help everyone by opening your mind for knowledge.Thank you.
I have POTS and have repeatedly tested negative for Lyme Disease. I do have autonomic neuropathy, however, of unclear etiology. Viral etiology has been suggested, along with possible MCA, and of course the dreaded autoimmune theory (which does seem plausible since I have been diagnosed with other autoimmune disorders). But, point being: No Lyme Disease. It seems a bit short-sighted to assume that all POTS cases are from Lyme disease, don't you think?
Yeah, Ehlers Danlos syndrome and related collagen-based disorders are notorious for causing POTS. These are genetic conditions that people are just born with. I was born with hypermobile type Ehlers Danlos syndrome, and started getting POTS symptoms at age nine. My POTS got much worse after puberty. People with Ehlers Danlos syndrome are often misdiagnosed with Lyme disease, unfortunately.
@@Dulcimerist I have hyper-POTS, EDS, MCAS, urticaria/dermatographia, Neurocardiogenic syncope...
How can I get proper treatment in Richmond VA!
I went to your website and you are a very mature and strong person.
You have gone through alot and you still push. May God continually bless and keep you. I pray you are now having more better days!!!
I have hyper-POTS, EDS, MCAS, urticaria/dermatographia, Neurocardiogenic syncope...
How can I get proper treatment in Richmond VA!
Look up the childrens heart institute in Herndon VA!!! I drive from SC to get treatment here!! Literally the best of the best pots treatment and in VA
I'm confused . First of all says a group have hyperadrenergic pots and that they have typically high blood pressures and then states a subgroup of the hyperadrenergic group have mast cell disorders with typically low blood pressures . . . . .
allison I thought it was just me
There’s different types of Hyperadrenergic POTS!! There are some with High Blood Pressure, Low Blood Pressure, and Central, which doesn’t have any affect on Blood Pressure!! That’s what I have!! Hope that helps!! Lol
Hi. I have the hyper/MCA and my BP swings wildly between low and high but it definitely shoots up more often then it tanks.
Great information and how generous and professional of Dr. Grubb! Great questions and a wealth of information! Thank you both!
Great interview of your Dr. on a very complex condition. very professionally done.
I've been tested twice for Lyme disease and says I don't have it? So how can I have it with out Lyme?
It is commonly known now there are several possible causes for pots. Lyme is one. In my husband's case, his is due from EDS/hyper mobility syndrome. www.dysautonomiainternational.org/ is an excellent resource in learning about POTS and other forms of Dysautonomia. They do a great job of staying on top of the latest research too. dysautonomiaadvocacyfoundation.org/ is another great resource. Both of these organizations also have an informative and very active social media feed on facebook and twitter. I recommend checking them both out.
Young lady...Thank you for doing this interview on Hyper Adreneric Pots. I have this with MCAS and it really is like a roller coster ride. I take all those things the doctor mentioned and I have recently found oral cromolyn sodium very helpful.
I have hyper-POTS, EDS, MCAS, urticaria/dermatographia, Neurocardiogenic syncope...
How can I get proper treatment in Richmond VA!
That introduction was so weird, it’s like she’s being held hostage stroking his ego
This is the type I have...I'm glad you posted this and thanks very much to Dr Grubb for helping us with awareness :)
Ambien caused my POTS... almost killed me. Cured after I stopped Ambien.
What is Ambien?
@@beautyfromashes14 Ambien is a pretty heavy knock-out drug for insomnia. I've heard horror stories from people who have been on it.
@@Dulcimerist I love my ambien
She has the sweetest voice. I believe I have had this three separate times in the past thirty years. I have found the H1H and 2 antagonist to be useful in addition to mast cell stabilizers which include Quercitin and vitamin C and I go to the gym every day. If I don’t follow this protocol I end up in the emergency room with tachycardia and extremely elevated blood pressure from the histamine. I also do intermittent fasting, even OMAD when necessary to keep my histamine bucket from overflowing. I still have issues after eating but they’re short lasting and the rest of my life is functional. Get a Dutch urine Assay test and have your adrenals checked. This illness can be completely debilitating but there are things you can do to at least make you functional. My love and best wishes to all of you suffering from this hideous illness.
I have hyper-POTS, EDS, MCAS, urticaria/dermatographia, Neurocardiogenic syncope...
How can I get proper treatment in Richmond VA!
have you tried DAO it works for food.
Great Video ! Amazing patients & the few RARE Amazing Drs...like Dr Grubb & Dr Kinsela & Dr Gupta!!
We need more research on the SLC 6A2 gene and POTS !!
Dr. Grubb and Dr. Karabin are my heroes.
Finally someone says something about the other symptoms.. there's more to it! 😉 every time I have to text or make a phone call.. My heart goes up to mach 75. Nobody understands!
That's how I used to be, before my doctors finally gave me the right medications to treat my hyperadrenergic POTS. Hoping your doctors have found the treatment options that work best for you as well. I take either Guanfacine or Clonidine before bed. This type of medication treats hyperadrenergic POTS by signalling the body not to dump so much norepinephrine and adrenaline into circulation, which in turn calms the "fight or flight" panic and anxiety response. I also take Pyridostigmine during the day, which further treats my POTS and also treats my gastroparesis and chronic constipation.
@@Dulcimerist hey, I’m headed for the same diagnosis, can i ask what your resting heart rate was before they gave you puridostygmine?
i have the first pots that Dr.Blair described i have had lots of problems passing out walking etc and i have been trying to get help and for some reason i have been declined at the mayo clinic and am now waiting for Dr.Blair to see me to hopefully help me feel better
is there anything else i should be doing?
Thank you
I called to get in to see Dr Grubb but his waitlist is 18 months /:
I was bitten by some insect(s) and developed this and some autoimmune issues. Lyme and or co-infections? The current testing for Borrelia species in not adequate in NY. They test for just one of the several that are know to inhabit this area, and moreover, there are Euro variants to be concerned with. I am sure there are several causes. However, I find that most MDs are interested in treating symptoms and find causality - unless is leads to more long term drugs and visits.
What are you talking about?! You have POTS and you are not Orthostatic? Great...
Please just shut up. We are many in our family with symptoms of POTS and all of us with dysautonomia also have EHLERS-DANLOS SYNDROME! Our EDS is the cause of our POTS! Also, we have mast cell problem, in fact, my son is even diagnosed with Mastocytosis, not only MCAS.
Beckah Brandin You can have POTS without being Orthostatic!! It’s call Central Hyperadrenergic POTS!!
Beckah Brandin what does African American have to do with any of it?!? Stupid. How about I’m a young women who struggles with.....