I feel like I finally have words to go with this mysterious issue I've been having since 2017. At first my symptoms were more like VS, but after a year of steroids, then no steroids, and now high BP, I'm more a combo of VS and POTS. And Dr. Kinsella called it "a common combination!" I've never been so happy to hear the word "common" applied to my situation! Still no diagnosis and I've seen a neurologist and a cardiologist. I'm in Texas, unemployed, working through the red tape on getting Medicaid and SSI (which is SO hard for someone who's already disabled... like don't they realize that this stuff is ridiculously hard?) My PCP with county medical is fantastic, but hardly has the tools or experience to diagnose me. I wish we had SSM around here.
I wish I could go see Dr Kinsella. He doesn't take my insurance. He's the only dr within a state that specializes in this. It's so frustrating! My wish for Christmas this year (which will be 2 years for me dealing with this) is that I could get into see Dr Kinsella. It would mean the absolute world to me.
There's a book called CFS Unravelled that talks about how stress can induce dysautonomia, including POTS. Plenty of stories of people who recover, although I've struggled with it now for many years.
I strongly believe that cervical instability is in play for many(not all) pots patients I know of quite a few people who sketcher have a loss of Curve or bulging disks see Brian hutcheson cervical curve correction his channel has video suggesting some people have it due to the issue
@SSM Health St. Louis Well, I have a question. I had a positive tilt table for pots syndrome but I have super high BP, not low. I thought i have hyperadnreal type pots, but with is the difference between hyperadrenal pots and baroreflex dysfunction? I have all the symptoms of hyperadrenal....but of baroreflex failure too..like constant sweating, insomia, facial flushing, high BP, high HR, panic, anxiety, but not really lightheaded, or dizzy or faint or blood pooling in my legs like most pots patients. So what is it?
yorocco1 it can be caused as a comorbidity from other conditions as well, for example my cousin has many autoimmune disorders and his whole immune system is messed up so it attacks his autonomic nervous system as well
"You can't sleep, but you're so tired, you can't hardly move" - nailed it :(
Yes
I feel like I got run over by a truck in the morning when I get up! Before I fall asleep it feels like I have electricity flowing through my body.
I feel like I finally have words to go with this mysterious issue I've been having since 2017. At first my symptoms were more like VS, but after a year of steroids, then no steroids, and now high BP, I'm more a combo of VS and POTS. And Dr. Kinsella called it "a common combination!" I've never been so happy to hear the word "common" applied to my situation!
Still no diagnosis and I've seen a neurologist and a cardiologist. I'm in Texas, unemployed, working through the red tape on getting Medicaid and SSI (which is SO hard for someone who's already disabled... like don't they realize that this stuff is ridiculously hard?) My PCP with county medical is fantastic, but hardly has the tools or experience to diagnose me.
I wish we had SSM around here.
I wish I could go see Dr Kinsella. He doesn't take my insurance. He's the only dr within a state that specializes in this. It's so frustrating! My wish for Christmas this year (which will be 2 years for me dealing with this) is that I could get into see Dr Kinsella. It would mean the absolute world to me.
There's a book called CFS Unravelled that talks about how stress can induce dysautonomia, including POTS. Plenty of stories of people who recover, although I've struggled with it now for many years.
Thanks so much for this information. I'm testimony that many Doctors miss this diagnosis
Excellent video and good to know ther are Doctors out there that do understand autonomic disorders the word need spreading!!!
I have pots but I have trouble staying awake not falling asleep. Can't exercise and meds made my heart rate go too low or other bad side effects.
I strongly believe that cervical instability is in play for many(not all) pots patients I know of quite a few people who sketcher have a loss of Curve or bulging disks see Brian hutcheson cervical curve correction his channel has video suggesting some people have it due to the issue
@SSM Health St. Louis Well, I have a question. I had a positive tilt table for pots syndrome but I have super high BP, not low. I thought i have hyperadnreal type pots, but with is the difference between hyperadrenal pots and baroreflex dysfunction? I have all the symptoms of hyperadrenal....but of baroreflex failure too..like constant sweating, insomia, facial flushing, high BP, high HR, panic, anxiety, but not really lightheaded, or dizzy or faint or blood pooling in my legs like most pots patients. So what is it?
Low-dose naltrexone for POTS can bring remission.
Please read about DNRS. There is HOPE
Yes 👍🏼
Are you healed Tommie?
POTS is a Vitamin B1 or Thiamine deficiency according to a certain Dr here on UA-cam.
Metaorange
No, it isn’t. People develop it after trauma like concussion, pregnancy, or surgery.
yorocco1 Or it could be caused by a low b1 deficiency. It can be caused by different things - a b1 vitamin deficiency or trauma like you stated.
yorocco1 it can be caused as a comorbidity from other conditions as well, for example my cousin has many autoimmune disorders and his whole immune system is messed up so it attacks his autonomic nervous system as well
POTS isn’t caused by a vitamin deficiency, it’s actually not very common for many people with POTS to have a B1 deficiency :)
Honeysuckle Blossom mast cell sounds horrible, and ive heard about how painful eds can be. i hope you’re doing well :)