There are many factors that could cause a POTS patient to sometimes not meet the criteria (E.g. time of day, hydration level & meds, etc). & although I said a spray CAN be given (1:23), not all hospitals offer it. BUT, the fact this is given in a lot of hospitals during the test tells us everything we need to know, which is that there are cases when a pots patient may not meet the criteria on their own! It’s a shame that not all hospitals offer it, but the fact that a lot do, gives us enough info to answer the questions that this video addresses 😊
@@GeorginasJourney BTW, I was diagnosed with POTS 2 days age but it was my primary Dr. I am being scheduled for a cardiologist also. I am also getting a brain MRI Tuesday and seeing an ophthalmologist next week thanks to my right eye going blind and HORRIBLE pain coming from what feels like behind the eyes. I know POTS is secondary to something causing everything so maybe the brain MRI can tell us more. I am crossing my fingers that it is just one treatable thing causing all this but at the same time kinda scared to say the possibilities out loud :( Anyway, thanks for your content, I find it relaxing yet informative.
I hope you get the answers you’re hoping for, whatever they are 💗 that’s a great step forward getting the pots diagnosis even, it’s by no means a cure, but my pots medication does help me a bit 😊
I’m late commenting to this video but I just found your channel! I have had POTS symptoms for at least 10 years and diagnosed 2 years ago after it hit the fan after covid. I have been to an autonomic specialist at Vanderbilt. The day of my autonomics testing, my TTT was 29 BPM. I completely failed the Valvasa testing. She said they look at symptoms AND test results. She said everyday and moment is different. It’s constant ebb and flow. They don’t do the nitroglycerin there for a normal TTT. My local PCP also specializes in POTS and he gets so angry when nitro is given. It’s useless and it increases the chances of people coding during the test. I had it during my first TTT that wasn’t at Vandy and it was the most horrible experience of my life. It’s not for everyone though.
I had official POTS testing. Had a Tilt Table Test at Birmingham Queen Elizabeth hospital. But there was no mention of a spray? Also I am pretty sure the table did go completely upright. I don’t think testing is the same in every hospital. There are different ways they do it. I have heard of differing amounts of time being used, and different rules on eating and drinking beforehand. What I would personally say is from my experience my heart rate and symptoms were worse during the TTT than just standing normally. Something about the table taking your weight tends to create a more dramatic reaction in POTS sufferers. My reaction was way more extreme than standing, and I was told this was normal and to be expected. My heart rate went to 181 bpm and they had to stop the test at the earliest point they could within their rules which was 10 minutes as my symptoms were visibly really bad.
It’s meant to be tilted to 60-70 degrees for suspected pots patients (sometimes, but more rarely, 80 which feels like standing, but still isn’t fully upright ) you can read more about it on the pots uk website if you’d like to 😊 And, yes! not everyone is offered the spray, some don’t need it & some hospitals don’t use it all, I was just using the spray to answer the questions I frequently get asked (what this video is about) & to explain my answers, but you’re right, not all hospitals use it. For the purpose of answering these questions though, it was important for me to discuss it- most of the people watching will be people who are awaiting testing or confused by their home or official results, so it’s helpful for them to know about, even if they didn’t or won’t have it themselves, just knowing it exists is reassuring to lots of people. I also have brain fog & as I expressed in the video, I was really dizzy & my cognitive function was impacted in this video, so I just do my best to answer the questions I get, as I said in the video, I’m not a doctor and I’ve never claimed to be, people often come to me for reassurance, rather than medical advice, which is the case for this video also 😊
Hi! Lovely to hear from you too! & so cool that you’re from Minnesota, people tell me where they’re from quite often, I should start one of those scratch off travelling maps but for all my friends on here to see where everyone is from 😊
I need this spray for when I go through my pip assessement! does anyone know what's in this magic spray? and most importantly can they reverse ingenieur it to calm down the autonomic system? When non-pots people come to me saying "but my heartraate goes up when I stand" I liken pots to a boat. Normally if you're in a small boat and you move to one side of it, the boat tilts... with pots the slightest mouvement of the boat (the autonomic system) and the boat rolls to nearly capsizing... everything is exagerated, you hear a sudden noise and you're not just startled but completely physically freaked out (palpitations, nausea, sweating, shortness of breath... ) minor things and our bodies react as if it was the end of the world even if our minds are still quite chill...
It’s GTN spray, you can google it if you’d like to learn more :) There’s no reverse drug yet sadly, but many management options such as beta blockers, midodrine, pyridostigmine, fludrocortisone, etc 😊
I'm very interested in this spray, too. I've already been to my cardiologist but - surprise - he found nothing. And then there are days where my heart rate jumps from 60 to almost 140 when I stand up. I've made a video to show my doctor but I'm still afraid he won't believe me when I'm sitting in his office and my results look fine. Edit: Georgina and I commented to same time lol so thanks Georgina!
@@GeorginasJourney Hi thanks for your reply! i'm already on propranolol (beta- bloker) it does help a bit but I now have a resting heart rate of around 46 bpm and would still test positive for pots even with medication... here's to hoping that something a bit better can be found for all us potsies!
@@serasvega8448 Hi! my cardiologist had absolutely no clue what so ever so i took along a bunch of serious peer reviewed medical journals to help back myself up. I'm currently working on my gp to give me a referal to neurology...
@@serasvega8448 keep filming it! Videos of your heart rate are helpful :) I’ve seen people record themselves being tired or breathless to show their doctors- this often doesn’t go down well (I’ve never done this myself, but I‘be heard of people doing it), but videos of the actual Heart rate change on a pulse ox or similar can be really useful for doctors :) I’ve never shown doctors my own videos of my hr but I know a couple of people who did :)
I'm just starting the diagnosis process. I've been to a cardiologist a while ago and of course when I was there, there was nothing wrong. But my symptoms got worse so I will try again. I've been making videos but of course it would be better if he could see it in person. Wish me luck (not for being sick but for getting a diagnosis!)
Good luck! If it’s pots you think you have, make sure they see the difference from lying or at least sitting to standing! Some cardio’s only test patients lying down, which often doesn’t show any problems for pots patients!
@@GeorginasJourney lol he tested me on a bike and made an ultrasound. Not very helpful. This was a few years ago before I knew about HSD/EDS or POTS, so now the challenge is to get the tests that are necessary for getting diagnosed.
@@serasvega8448 My doctor sent me to a neurologist, and I was diagnosed right away. I’ve never been to a cardiologist. Technically it’s a nervous system issue. If your heart is good, might want to consider a different specialist. 🤷🏼♀️
@@KristiTalk oh ok, I think I will try this if the cardiologist doesn't work. Most people explained that they saw a cardiologist who also ordered the TTT
@@serasvega8448 Don’t know where you live. I went to the Cleveland Clinic, they told me people fly in from all over the world to be diagnosed with POTS. The neurologist saw me, scheduled TTT a few days later and second appointment immediately after my TTT for diagnosis. They also found my veins have too elasticity that day. 🙄 But yeah, they can schedule that test for you too.
Then there's me: constantly fainting and dizzy, but no severely elevated heart rate, normal blood readings on vitamins, iron, and hemoglobin. Also not dehydrated. They don't know what causes it, so they won't help me either.
Have they tested blood glucose & folic acid? It usually takes a lot to make hemoglobin go out of range by nhs standards anyway so I’m not a fan of that measure of health anyway, my hemoglobin was supposedly good when I was in Resus (when everything else was dangerously bad)
Definitely recommend checking your BP the next time you’re symptomatic too. & if BP is normal or high, can you ask to try a low dose beta blocker to see if it helps?
Sorry for all the replies, I just know how horrible that feels. I was in your position for years when no one was running the right tests for what was wrong with me (& I still faint now when I’m hungry & idk why or how to stop it, when I don’t get much warning)
Georgina i am having episodes after eating where my body just shuts down. I feel full, I cant breathe and then my legs feel weak and I fall to the floor with all over body weakness. I can't get up or hold my head up. This lasts about 3-5min.
Oh no, I’m sorry 😞 there’s a word called post prandial which means after eating & there a few things that can cause this Post prandial hypo/hypertension- BP problems after eating Post prandial tachycardia- fast heart rate after eating This all could fall under the bracket of autonomic dysfunction, so it’s possible that a medication to slow heart rate or increase/decrease bp could help, if not, possibly eating slower & with rests may help. This happens to me too but to a lesser extent generally as I’m medicated
@@GeorginasJourney so I did a squat down and my heart rate dropped to 67-70 then when I stood up which is when I feel the worst it went up to 102. However during the day I have caught my hr up to 124. I know you are supposed to lie down and get up. My body doesn't react as badly
The monotonous intro to this is bugging me so much 🤣💀 Can see me getting the pep in my step back a bit in the end clips where I’m actually leaning back in bed 😂🛌
All the details about it are in this video 😊 My Medication, Braces & Splints! ua-cam.com/video/mgdkjQuAwq4/v-deo.html there are time stamps if you want to skip right to that brace 😊
Thank you so much. I watched it. I also have an aversion to keeping things touching my skin or on my fingers. I wish I could wear the finger splints. I just hate the feeling of anything on my fingers. I also have to use soft fabrics or it will irritate me.
I actually cope a lot better with the thumb brace than the ring splints if that’s any consolation! I can last longer with the braces on, whereas I can usually only do a few hours of the ring splints
There are many factors that could cause a POTS patient to sometimes not meet the criteria (E.g. time of day, hydration level & meds, etc). & although I said a spray CAN be given (1:23), not all hospitals offer it. BUT, the fact this is given in a lot of hospitals during the test tells us everything we need to know, which is that there are cases when a pots patient may not meet the criteria on their own! It’s a shame that not all hospitals offer it, but the fact that a lot do, gives us enough info to answer the questions that this video addresses 😊
You have the cutest little laugh that puts a smile on my face every time! Thank you...
Thank you so much ☺️
@@GeorginasJourney BTW, I was diagnosed with POTS 2 days age but it was my primary Dr. I am being scheduled for a cardiologist also. I am also getting a brain MRI Tuesday and seeing an ophthalmologist next week thanks to my right eye going blind and HORRIBLE pain coming from what feels like behind the eyes. I know POTS is secondary to something causing everything so maybe the brain MRI can tell us more. I am crossing my fingers that it is just one treatable thing causing all this but at the same time kinda scared to say the possibilities out loud :(
Anyway, thanks for your content, I find it relaxing yet informative.
I hope you get the answers you’re hoping for, whatever they are 💗 that’s a great step forward getting the pots diagnosis even, it’s by no means a cure, but my pots medication does help me a bit 😊
If you live where they don't have nasal spray or tilt table tests try going to the doctor in the morning. POTS is worse in the mornings.
Below, I’ve linked ‘How To Test For POTS At Home’ (I’ll add the actual card when I feel better later 😊) ua-cam.com/video/S7wtrrOgSW8/v-deo.html
I’m late commenting to this video but I just found your channel! I have had POTS symptoms for at least 10 years and diagnosed 2 years ago after it hit the fan after covid. I have been to an autonomic specialist at Vanderbilt. The day of my autonomics testing, my TTT was 29 BPM. I completely failed the Valvasa testing. She said they look at symptoms AND test results. She said everyday and moment is different. It’s constant ebb and flow. They don’t do the nitroglycerin there for a normal TTT. My local PCP also specializes in POTS and he gets so angry when nitro is given. It’s useless and it increases the chances of people coding during the test. I had it during my first TTT that wasn’t at Vandy and it was the most horrible experience of my life. It’s not for everyone though.
Sadly most people don’t get to go to an autonomic specialist, many consider themselves lucky just to get a basic TTT at the cardiologists
I had official POTS testing. Had a Tilt Table Test at Birmingham Queen Elizabeth hospital. But there was no mention of a spray?
Also I am pretty sure the table did go completely upright.
I don’t think testing is the same in every hospital. There are different ways they do it. I have heard of differing amounts of time being used, and different rules on eating and drinking beforehand.
What I would personally say is from my experience my heart rate and symptoms were worse during the TTT than just standing normally. Something about the table taking your weight tends to create a more dramatic reaction in POTS sufferers. My reaction was way more extreme than standing, and I was told this was normal and to be expected. My heart rate went to 181 bpm and they had to stop the test at the earliest point they could within their rules which was 10 minutes as my symptoms were visibly really bad.
It’s meant to be tilted to 60-70 degrees for suspected pots patients (sometimes, but more rarely, 80 which feels like standing, but still isn’t fully upright ) you can read more about it on the pots uk website if you’d like to 😊
And, yes! not everyone is offered the spray, some don’t need it & some hospitals don’t use it all, I was just using the spray to answer the questions I frequently get asked (what this video is about) & to explain my answers, but you’re right, not all hospitals use it. For the purpose of answering these questions though, it was important for me to discuss it- most of the people watching will be people who are awaiting testing or confused by their home or official results, so it’s helpful for them to know about, even if they didn’t or won’t have it themselves, just knowing it exists is reassuring to lots of people. I also have brain fog & as I expressed in the video, I was really dizzy & my cognitive function was impacted in this video, so I just do my best to answer the questions I get, as I said in the video, I’m not a doctor and I’ve never claimed to be, people often come to me for reassurance, rather than medical advice, which is the case for this video also 😊
Georgina so good to see you!!:) I was wondering how you have been. Best wishes to you from Minnesota
Hi! Lovely to hear from you too! & so cool that you’re from Minnesota, people tell me where they’re from quite often, I should start one of those scratch off travelling maps but for all my friends on here to see where everyone is from 😊
I need this spray for when I go through my pip assessement! does anyone know what's in this magic spray? and most importantly can they reverse ingenieur it to calm down the autonomic system?
When non-pots people come to me saying "but my heartraate goes up when I stand" I liken pots to a boat. Normally if you're in a small boat and you move to one side of it, the boat tilts... with pots the slightest mouvement of the boat (the autonomic system) and the boat rolls to nearly capsizing... everything is exagerated, you hear a sudden noise and you're not just startled but completely physically freaked out (palpitations, nausea, sweating, shortness of breath... ) minor things and our bodies react as if it was the end of the world even if our minds are still quite chill...
It’s GTN spray, you can google it if you’d like to learn more :) There’s no reverse drug yet sadly, but many management options such as beta blockers, midodrine, pyridostigmine, fludrocortisone, etc 😊
I'm very interested in this spray, too. I've already been to my cardiologist but - surprise - he found nothing. And then there are days where my heart rate jumps from 60 to almost 140 when I stand up. I've made a video to show my doctor but I'm still afraid he won't believe me when I'm sitting in his office and my results look fine.
Edit: Georgina and I commented to same time lol so thanks Georgina!
@@GeorginasJourney Hi thanks for your reply! i'm already on propranolol (beta- bloker) it does help a bit but I now have a resting heart rate of around 46 bpm and would still test positive for pots even with medication... here's to hoping that something a bit better can be found for all us potsies!
@@serasvega8448 Hi! my cardiologist had absolutely no clue what so ever so i took along a bunch of serious peer reviewed medical journals to help back myself up. I'm currently working on my gp to give me a referal to neurology...
@@serasvega8448 keep filming it! Videos of your heart rate are helpful :) I’ve seen people record themselves being tired or breathless to show their doctors- this often doesn’t go down well (I’ve never done this myself, but I‘be heard of people doing it), but videos of the actual Heart rate change on a pulse ox or similar can be really useful for doctors :) I’ve never shown doctors my own videos of my hr but I know a couple of people who did :)
I'm just starting the diagnosis process. I've been to a cardiologist a while ago and of course when I was there, there was nothing wrong. But my symptoms got worse so I will try again. I've been making videos but of course it would be better if he could see it in person.
Wish me luck (not for being sick but for getting a diagnosis!)
Good luck! If it’s pots you think you have, make sure they see the difference from lying or at least sitting to standing! Some cardio’s only test patients lying down, which often doesn’t show any problems for pots patients!
@@GeorginasJourney lol he tested me on a bike and made an ultrasound. Not very helpful. This was a few years ago before I knew about HSD/EDS or POTS, so now the challenge is to get the tests that are necessary for getting diagnosed.
@@serasvega8448 My doctor sent me to a neurologist, and I was diagnosed right away. I’ve never been to a cardiologist. Technically it’s a nervous system issue. If your heart is good, might want to consider a different specialist. 🤷🏼♀️
@@KristiTalk oh ok, I think I will try this if the cardiologist doesn't work. Most people explained that they saw a cardiologist who also ordered the TTT
@@serasvega8448 Don’t know where you live. I went to the Cleveland Clinic, they told me people fly in from all over the world to be diagnosed with POTS. The neurologist saw me, scheduled TTT a few days later and second appointment immediately after my TTT for diagnosis. They also found my veins have too elasticity that day. 🙄 But yeah, they can schedule that test for you too.
I am glad to see you! 😊
You too! ☺️
Then there's me: constantly fainting and dizzy, but no severely elevated heart rate, normal blood readings on vitamins, iron, and hemoglobin. Also not dehydrated. They don't know what causes it, so they won't help me either.
Have they tested blood glucose & folic acid? It usually takes a lot to make hemoglobin go out of range by nhs standards anyway so I’m not a fan of that measure of health anyway, my hemoglobin was supposedly good when I was in Resus (when everything else was dangerously bad)
Definitely recommend checking your BP the next time you’re symptomatic too. & if BP is normal or high, can you ask to try a low dose beta blocker to see if it helps?
Sorry for all the replies, I just know how horrible that feels. I was in your position for years when no one was running the right tests for what was wrong with me (& I still faint now when I’m hungry & idk why or how to stop it, when I don’t get much warning)
Georgina i am having episodes after eating where my body just shuts down. I feel full, I cant breathe and then my legs feel weak and I fall to the floor with all over body weakness. I can't get up or hold my head up. This lasts about 3-5min.
Oh no, I’m sorry 😞 there’s a word called post prandial which means after eating & there a few things that can cause this
Post prandial hypo/hypertension- BP problems after eating
Post prandial tachycardia- fast heart rate after eating
This all could fall under the bracket of autonomic dysfunction, so it’s possible that a medication to slow heart rate or increase/decrease bp could help, if not, possibly eating slower & with rests may help. This happens to me too but to a lesser extent generally as I’m medicated
I set up a dr. Appt. They will probably.send me for tilt table test
@@GeorginasJourney so I did a squat down and my heart rate dropped to 67-70 then when I stood up which is when I feel the worst it went up to 102. However during the day I have caught my hr up to 124. I know you are supposed to lie down and get up. My body doesn't react as badly
The monotonous intro to this is bugging me so much 🤣💀 Can see me getting the pep in my step back a bit in the end clips where I’m actually leaning back in bed 😂🛌
What is that brace? I have horrible thumb issues. I actually bought these wraps but i like how small that is? What is it. Where did you get it?
All the details about it are in this video 😊 My Medication, Braces & Splints!
ua-cam.com/video/mgdkjQuAwq4/v-deo.html there are time stamps if you want to skip right to that brace 😊
Thank you so much. I watched it. I also have an aversion to keeping things touching my skin or on my fingers. I wish I could wear the finger splints. I just hate the feeling of anything on my fingers. I also have to use soft fabrics or it will irritate me.
I actually cope a lot better with the thumb brace than the ring splints if that’s any consolation! I can last longer with the braces on, whereas I can usually only do a few hours of the ring splints
Compression gloves are fingerless & soft, that could help a bit?
I actually got some really cute soft pink ones and I can do things like grab the fridge, hold the steering wheel without pain