I feel so validated when tests show that there is just an issue and I'm not exaggerating or crazy! That I'm not alone being upset when a test comes back normal. It's so good to hear I'm not alone in that.
5:23 is a PAC. Normal to have tons of them everyday. I have IST with frequent PVCs and PACs. On corlanor, next step is a sinus mode modification ablation…since corlanor isn’t fully kicking it. A PAC is an ectopic beat from the atria not from the sinus node. And yes there’s things you can do with it. High salt to keep BP up. When BP drops the heart rate can spike, there’s beta blockers, there’s corlanor (ivabradine) that is a life saver for most and doesn’t affect BP. And in cases that are terrible, they will put an ablation on the table. Working out can overtime decrease your resting rate and slightly help. When I say working out, I mean 30 min walks a day. Trust me I know we can’t work out. Walking is hard enough with the pounding and breathlessness. When it’s bad it’s bad….there’s several different treatment plans. Corlanor is one hell of a drug. I love it, it’s helped me. IST is also very very common in women our age. Most climb out of it with time. If not, ablation is it’s limiting enough. May have graves or hashimotos. I got diagnosed with hashis, but it causes bradycardia. Graves, can cause IST unmanaged. Endo will check your thyroid.
Hey there . Even I m a sufferer of IST which suddenly pops out suddenly somewhere..I usually experience this when I am having some gastronomical symptons like heart burn or loose motion. I am on medications which controls it fully but sometimes it just jumps and at that time I have to be on vermapil tablets to cool it down. Th3 electrophysiologist too pronunced it to be ist . He advised me against getting ablating the sinus nodes . It would be the last resort and doctor has said to nothing to worry about.. I usually have episodes of these like every 6 months for a week or so. Hey there gal nothing to worry about just chill.
I have severe IST as well as many other issues. My resting heart rate is 150-170. When I move it gets above 200. I have tried many medications including beta blockers and mitrodine (don't know if I am spelling that right). Unfortunately they have all failed. It has now started to cause significantly prolonged QT so I will need a pacemaker put in. Have they discussed any other options other than meds for you?
Hey I have IST and dysautonomia too ❤ I’m 26 and my story sounds very similar. Except for the blacking out part. I’m a teacher and in my 2nd year of teaching!!
I had never heard about IST before, really interesting. My heart rate is elevated, but definitely not >100 bpm at rest! It feels awful when it’s pounding in your chest though. I did want to comment on Minodrine (I am a PA). Minodrine is an alpha-1-agonist. This means it constricts your blood vessels, helping your body move blood around easier and increasing your blood pressure. There is a “theoretical” risk that taking Minodrine while pregnant would expose the baby to the vasoconstrictions properties and cause issues. However, that effect has not been demonstrated in any pregnant POTS patients taking Minodrine. So the risk is very low IF you were to take it in pregnancy. Minodrine also has a half-life of 4 hours, so it is very quickly out of your system and there is no data suggesting long term side effects, and definitely nothing showing long term effects on fertility. I just wanted to let you know so if in the future you decide you want to try another medication, you won’t be scared of Minodrine’s impact on your ability to have a baby. :)
Wow my cardiologist told me I don’t have IST because my heart drops to the 60s when I am asleep! My fastest rate was 176 bpm walking in the parking lot and they told me that everyone has rates that high while walking 🤦🏻♀️
I got diagnosed with IST recently. My resting heart rate when I’m sleeping is very low too, between 50 and 65. But throughout the day I have symptoms, and particularly my heart rate spikes to over 200 when I do exercise (I’m 28 for age reference) even though I’m very fit/active. I do wonder if I have POTS too as standing up is a big trigger for me. Lying down helps. My cardio wouldn’t test for it. I’ve seen a few people say the same. Anyway just wanted to say you’re not alone, this is all very nuanced and your symptoms are valid x
Hi, sorry youre going thru so much, just wanted to point out IST is definately more common in women under 30-35, and can cause you to faint. There are multiple other medications to try including beta blockers like propanolol or Iverbradine other than the midodrine. So others watching this pls dont think there are no safe options for you
if you developed it during an episode of viral myocarditis, then it has a chance to go away on its own. Bacterial myo, endocarditis, and congenital heart ailments, not so much, so if you were born with it then it tends to stay.
to say that inappropriate sinus tachycardia has nothing to do with postural orthostatic tachycardia syndrome is just simply and clearly not true. They are both significant diagnoses within the dysautonomia spectrum, and both have to do with chronic tachycardia..
Hi Averie, yeah that sucks. I developed afib after I retired and undergone 2 catheter ablations. After the second procedure, I began to experience sinus tachycardia, where my resting heart rate was at 100bpm…all the time and even higher after my morning walk. At the moment, after many combinations of drug therapies, my heart rate at rest is now 58-65 bpm. Has your doctors ruled out afib? Your ecgs appeared to reflect that…
I'm not sure where you got the idea that in normal (if that exists lol) dysautonomia, the blood pressure rises with the heart rate, that's actually not true. Even just for Pots, a lot of people do have elevated heart rate without a blood pressure change at all but most people I know also have problems with low blood pressure too (not trying to sound harsh, just clarifying!)
I feel so validated when tests show that there is just an issue and I'm not exaggerating or crazy! That I'm not alone being upset when a test comes back normal. It's so good to hear I'm not alone in that.
Same.
Same. I mean I want to diagnose what the problem is but the doctor says it is normal not a serious condition
@himanshikathait3519 yes. While we suffer so much in everyday life
5:23 is a PAC. Normal to have tons of them everyday. I have IST with frequent PVCs and PACs. On corlanor, next step is a sinus mode modification ablation…since corlanor isn’t fully kicking it. A PAC is an ectopic beat from the atria not from the sinus node.
And yes there’s things you can do with it. High salt to keep BP up. When BP drops the heart rate can spike, there’s beta blockers, there’s corlanor (ivabradine) that is a life saver for most and doesn’t affect BP. And in cases that are terrible, they will put an ablation on the table. Working out can overtime decrease your resting rate and slightly help. When I say working out, I mean 30 min walks a day. Trust me I know we can’t work out. Walking is hard enough with the pounding and breathlessness. When it’s bad it’s bad….there’s several different treatment plans. Corlanor is one hell of a drug. I love it, it’s helped me.
IST is also very very common in women our age. Most climb out of it with time. If not, ablation is it’s limiting enough.
May have graves or hashimotos. I got diagnosed with hashis, but it causes bradycardia. Graves, can cause IST unmanaged. Endo will check your thyroid.
I’m so glad to have an update! The answers suck, but you have some. That’s crazy! Love you ❤️
thank you so much lindsey!!
You can take Corlanor for IST, it’s helped me with my POTS as well. I have both conditions like you.
Thanks for sharing this video!! I’m glad you learned some more answers!! Even if it’s not the most fun answer 😩
💗💗💗
Hey there . Even I m a sufferer of IST which suddenly pops out suddenly somewhere..I usually experience this when I am having some gastronomical symptons like heart burn or loose motion. I am on medications which controls it fully but sometimes it just jumps and at that time I have to be on vermapil tablets to cool it down. Th3 electrophysiologist too pronunced it to be ist . He advised me against getting ablating the sinus nodes . It would be the last resort and doctor has said to nothing to worry about.. I usually have episodes of these like every 6 months for a week or so. Hey there gal nothing to worry about just chill.
This sounds just like me.. I brought it up to my cardiologist about possible GERD and I suspect IBS.
Mine too..when my gut is off at all..tachy hits
I have IST always at rest +120, in addition to pots... I have to take a lot of medicine :( I can't find anyone with my situation
I have severe IST as well as many other issues. My resting heart rate is 150-170. When I move it gets above 200. I have tried many medications including beta blockers and mitrodine (don't know if I am spelling that right). Unfortunately they have all failed. It has now started to cause significantly prolonged QT so I will need a pacemaker put in. Have they discussed any other options other than meds for you?
Have you tried ivabradine with a beta blocker? My rest is 120-140... And with these meds I am below 100.
Hi new friend!! I have POTS. Thanks for sharing!!
hi!!
I have IST, I’m on propranolol for my tremor. My electro cardiologist refused to test me for POTs and I’m pissed about it because I think I have both
Hey I have IST and dysautonomia too ❤ I’m 26 and my story sounds very similar. Except for the blacking out part. I’m a teacher and in my 2nd year of teaching!!
I don't have any meds, trouble breathing normally, even on meds I have no energy and can't function like I use to before this nightmare
It actually can make you faint
I had never heard about IST before, really interesting. My heart rate is elevated, but definitely not >100 bpm at rest! It feels awful when it’s pounding in your chest though.
I did want to comment on Minodrine (I am a PA). Minodrine is an alpha-1-agonist. This means it constricts your blood vessels, helping your body move blood around easier and increasing your blood pressure. There is a “theoretical” risk that taking Minodrine while pregnant would expose the baby to the vasoconstrictions properties and cause issues. However, that effect has not been demonstrated in any pregnant POTS patients taking Minodrine. So the risk is very low IF you were to take it in pregnancy.
Minodrine also has a half-life of 4 hours, so it is very quickly out of your system and there is no data suggesting long term side effects, and definitely nothing showing long term effects on fertility.
I just wanted to let you know so if in the future you decide you want to try another medication, you won’t be scared of Minodrine’s impact on your ability to have a baby. :)
thank you so much for letting me know!💗
Wow my cardiologist told me I don’t have IST because my heart drops to the 60s when I am asleep!
My fastest rate was 176 bpm walking in the parking lot and they told me that everyone has rates that high while walking 🤦🏻♀️
Mine gets up high like that when I get up and walk to bathroom sometimes or it’s higher moving around :(
I got diagnosed with IST recently. My resting heart rate when I’m sleeping is very low too, between 50 and 65. But throughout the day I have symptoms, and particularly my heart rate spikes to over 200 when I do exercise (I’m 28 for age reference) even though I’m very fit/active.
I do wonder if I have POTS too as standing up is a big trigger for me. Lying down helps. My cardio wouldn’t test for it. I’ve seen a few people say the same.
Anyway just wanted to say you’re not alone, this is all very nuanced and your symptoms are valid x
@@Em-zn8gdsame
@Starzandsunsets same
Thank you for this
It can be crippling… it’s no fun!
hi are you in Ivabradine? how are you now?
Hi, sorry youre going thru so much, just wanted to point out IST is definately more common in women under 30-35, and can cause you to faint. There are multiple other medications to try including beta blockers like propanolol or Iverbradine other than the midodrine. So others watching this pls dont think there are no safe options for you
I am facing it since 10 months. I am 19 right now. It just gets worse everyday. Ate many medicines nothing happens.
I have IST too ,,, do I need catheter ablation or it will be Cure automatically ?
if you developed it during an episode of viral myocarditis, then it has a chance to go away on its own. Bacterial myo, endocarditis, and congenital heart ailments, not so much, so if you were born with it then it tends to stay.
to say that inappropriate sinus tachycardia has nothing to do with postural orthostatic tachycardia syndrome is just simply and clearly not true. They are both significant diagnoses within the dysautonomia spectrum, and both have to do with chronic tachycardia..
Hi Averie, yeah that sucks.
I developed afib after I retired and undergone 2 catheter ablations. After the second procedure, I began to experience sinus tachycardia, where my resting heart rate was at 100bpm…all the time and even higher after my morning walk. At the moment, after many combinations of drug therapies, my heart rate at rest is now 58-65 bpm.
Has your doctors ruled out afib? Your ecgs appeared to reflect that…
I'm not sure where you got the idea that in normal (if that exists lol) dysautonomia, the blood pressure rises with the heart rate, that's actually not true. Even just for Pots, a lot of people do have elevated heart rate without a blood pressure change at all but most people I know also have problems with low blood pressure too (not trying to sound harsh, just clarifying!)
you’re this video helps me lot ❤️
I have IST too will you be my friend I’m don’t know I’m just lost somewhere 🙃
Be my friend. I am lost too. It just gets worse everyday
Actually 20-30’s in women this usually happens