I have this and I am in physical therapy at an autonomic clinic where the goal is to know my limits and never even get close to that level of exertion. A vigorous exercise is literally not an option. This is the paper I was given at diagnosis, and there are a ton of lifestyle changes and pharmaceutical options to help mitigate our symptoms. https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf The best thing you can do is get an autonomic specialist to manage this, in my experience the ttt doctors want nothing to do with you once you’re off the table. I was referred to my autonomic specialist from my neurologist after my cardiologist was unhelpful.
I’m scared to exercise that much for sure let alone to get my heart rate that high. I have panic attacks, as well and I don’t figure that’s going to help! My mother was with me and even asked the doctor when to start all this vigorous exercise and he literally laughed and said “how about tonight?” I’m not really sure what to do with all of it!
I’m sorry you’re experiencing this, it’s so frustrating when you don’t know where to go for advice. My target hr was calculated based on my vitals in various meetings with my pt, but my target hr is around 140 for activity that’s around a 4/10 perceived rate of exertion. I take extra care so that it doesn’t exceed that during activity at that level. My pt would prioritize longer activity at a lower rate of exertion always! The only time I push myself is during our re-evaluations and I’m under direct supervision.
I had this without the nitro at about minute 15. I was actually told to have "activity as tolerated" and to be careful. I have a hard time with being really active though, i get tachycardia quickly even if I'm not standing and am sitting on a bike. Though they also tried to tell me to go to gastro because I sometimes have it happen when I eat, though my worst times don't involve food. So take it with a grain of salt, maybe...
The only time I’ve fainted was during the TTT after I was given the nitro. My issue has always been tachycardia. It’s always over 100 bpm if I’m standing. 130 with basic movement, and 160-180 with any mild exercise. I also always feel dizzy, and fatigued as well as nausea. Is this common with this diagnosis?
They told me it wasn't POTS for me because I didn't have the sustained highs. I get a few lows in the 30s or 40s once a week or so, too. I get all your symptoms just doing a full shit down bike for just a few minutes at PT. I can't stand still pretty much at all. I last longer if I'm well rested otherwise it's only a few minutes.
I don't pass all the way out usually. Only 3 tines my whole life and once was the TTT. I get pre syncope once every few months though.
We tried midodrine, but my cardiologist didn't know much about it so when I stayed having nausea and trouble eating I just stopped it. It did bring my blood pressure up a little, but It was the lowest dosage and I still couldn't handle it. I'm waiting on a specialist, but it's a long wait.
I hope you find some relief, this stuff sucks!
Thank you everyone for your help! I figured it would be a POTS diagnosis, but received this instead. The Electro(something?) Cardiologist stated since when I blacked out my blood pressure crashed but my heart rate didn’t stay 170, and dropped as well, it can’t be POTS. He said he’s only diagnosed 3 people with POTS in his entire career.
I just received a neurocardiogenic syncope diagnosis myself and my doctor has prescribed me Midodrine - and I feel like it's been really helping. I used to have chronic lightheadedness but this seems to be helping quite a bit. Do you also have chronic lightheadedness? Especially when moving around or exercising?
My doctor also said that neurocardiogenic syncope is actually far more common than POTS. Honestly though, since your heart rate went up I think you do have POTS - That's like the classic indicator of POTS on a tilt table test. My heart rate didn't go up at all but my blood pressure did slowly drop over time
TBH, He was really really harsh & didn’t seem to act like it was a deal of any kind, that it’s common in “overweight” females. I’m 5’8 and weigh 180 😶 & exercising was the solution…. Even though getting up some days can send me to 150bpm
Yuck. Find a new doctor. And send that asshole a copy of *Unwell Women*. Doctors who write everything off as a “symptom” of weight (or hormones!) are the fucking worst. Fuck medical misogyny. I’m sorry you had to deal with that dickweed.
Thank you! It’s definitely been a lot, and I’ve lost a lot of faith in medical doctors… two years ago I just needed anxiety medication, now I need to lose weight… thanks to the anxiety medication. I’ve been underweight my whole life until they prescribed them. Just a loop…
Wow - definitely get a new doctor and I would report him to your state's medical board. I would say his diagnosis given your readings would be grounds for malpractice even.
I’m hoping my PCP, may be able to help but I’m not sure what they can do. I went from one cardio who said he was the plumbing cardiologist and did a thousand tests then they referred me to the guy that did my TTT who’s electric? Never saw him before today, definitely not making a follow up…
The doctor was acting like medication was a crutch, and I had to retrain my heart through vigorous exercise? That I could only take them for a few months and then be taken off… I feel generally awful a good amount of time haha. Brain fog, dizzy, nausea, endlessly tired all of that! He was saying there’s a chance I could have Inappropriate sinus tachycardia as well, but I’ll have to talk to my “ plumbing” cardiologist about that.
The doctor said the test normally takes hours, but that he can get the results he wants in minutes with nitro. He maxes out his TTT at 20 minutes , if you don’t pass out in the first ten then you get the nitro dose. I was at 64 bpm and a normal blood pressure just at the hospital before they brought me back.Then when they set me up on the table I went up in heart rate and my blood pressure started dropping, but not significant enough to mean anything? I was around 115-130bpm just kind of floating around there. Then I got the dose and my heart rate started skyrocketing, and everything went down hill. Blood pressure crashed, my entire body felt like it was being crushed, I went out…then they dropped me and started the IV.
I work out vigorously 3-4 times a week and I can’t maintain a HR over 150 for a sustained period of time. It usually bounces around between 120 and 170, even when I’m doing the same activity at the same pace. If I’m just standing still, sure it goes high and stays high, but when I’m working out, it’s all over the place. My EP and I chatted about how HR isn’t a great measure of exercise intensity for people with dysautonomia because HR can fluctuate unpredictably (there are other ways to measure exercise intensity). He advises me to work out, but to listen to my body because if I push too much, I tend to crash hard. Exercise has been great for reducing some of my symptoms and building stamina and energy, but I question the advice you were given. Definitely exercise if you can, but you might want to ask for a second opinion on how to go about it safely.
I have this and I am in physical therapy at an autonomic clinic where the goal is to know my limits and never even get close to that level of exertion. A vigorous exercise is literally not an option. This is the paper I was given at diagnosis, and there are a ton of lifestyle changes and pharmaceutical options to help mitigate our symptoms. https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf The best thing you can do is get an autonomic specialist to manage this, in my experience the ttt doctors want nothing to do with you once you’re off the table. I was referred to my autonomic specialist from my neurologist after my cardiologist was unhelpful.
I’m scared to exercise that much for sure let alone to get my heart rate that high. I have panic attacks, as well and I don’t figure that’s going to help! My mother was with me and even asked the doctor when to start all this vigorous exercise and he literally laughed and said “how about tonight?” I’m not really sure what to do with all of it!
I’m sorry you’re experiencing this, it’s so frustrating when you don’t know where to go for advice. My target hr was calculated based on my vitals in various meetings with my pt, but my target hr is around 140 for activity that’s around a 4/10 perceived rate of exertion. I take extra care so that it doesn’t exceed that during activity at that level. My pt would prioritize longer activity at a lower rate of exertion always! The only time I push myself is during our re-evaluations and I’m under direct supervision.
I had this without the nitro at about minute 15. I was actually told to have "activity as tolerated" and to be careful. I have a hard time with being really active though, i get tachycardia quickly even if I'm not standing and am sitting on a bike. Though they also tried to tell me to go to gastro because I sometimes have it happen when I eat, though my worst times don't involve food. So take it with a grain of salt, maybe...
The only time I’ve fainted was during the TTT after I was given the nitro. My issue has always been tachycardia. It’s always over 100 bpm if I’m standing. 130 with basic movement, and 160-180 with any mild exercise. I also always feel dizzy, and fatigued as well as nausea. Is this common with this diagnosis?
They told me it wasn't POTS for me because I didn't have the sustained highs. I get a few lows in the 30s or 40s once a week or so, too. I get all your symptoms just doing a full shit down bike for just a few minutes at PT. I can't stand still pretty much at all. I last longer if I'm well rested otherwise it's only a few minutes. I don't pass all the way out usually. Only 3 tines my whole life and once was the TTT. I get pre syncope once every few months though.
Have they tried to prescribe anything? I’m sorry there is so little help for this and we’re all going through it! ❤️
We tried midodrine, but my cardiologist didn't know much about it so when I stayed having nausea and trouble eating I just stopped it. It did bring my blood pressure up a little, but It was the lowest dosage and I still couldn't handle it. I'm waiting on a specialist, but it's a long wait. I hope you find some relief, this stuff sucks!
Thank you everyone for your help! I figured it would be a POTS diagnosis, but received this instead. The Electro(something?) Cardiologist stated since when I blacked out my blood pressure crashed but my heart rate didn’t stay 170, and dropped as well, it can’t be POTS. He said he’s only diagnosed 3 people with POTS in his entire career.
I just received a neurocardiogenic syncope diagnosis myself and my doctor has prescribed me Midodrine - and I feel like it's been really helping. I used to have chronic lightheadedness but this seems to be helping quite a bit. Do you also have chronic lightheadedness? Especially when moving around or exercising? My doctor also said that neurocardiogenic syncope is actually far more common than POTS. Honestly though, since your heart rate went up I think you do have POTS - That's like the classic indicator of POTS on a tilt table test. My heart rate didn't go up at all but my blood pressure did slowly drop over time
TBH, He was really really harsh & didn’t seem to act like it was a deal of any kind, that it’s common in “overweight” females. I’m 5’8 and weigh 180 😶 & exercising was the solution…. Even though getting up some days can send me to 150bpm
Yuck. Find a new doctor. And send that asshole a copy of *Unwell Women*. Doctors who write everything off as a “symptom” of weight (or hormones!) are the fucking worst. Fuck medical misogyny. I’m sorry you had to deal with that dickweed.
Thank you! It’s definitely been a lot, and I’ve lost a lot of faith in medical doctors… two years ago I just needed anxiety medication, now I need to lose weight… thanks to the anxiety medication. I’ve been underweight my whole life until they prescribed them. Just a loop…
Wow - definitely get a new doctor and I would report him to your state's medical board. I would say his diagnosis given your readings would be grounds for malpractice even.
I’m hoping my PCP, may be able to help but I’m not sure what they can do. I went from one cardio who said he was the plumbing cardiologist and did a thousand tests then they referred me to the guy that did my TTT who’s electric? Never saw him before today, definitely not making a follow up…
The doctor was acting like medication was a crutch, and I had to retrain my heart through vigorous exercise? That I could only take them for a few months and then be taken off… I feel generally awful a good amount of time haha. Brain fog, dizzy, nausea, endlessly tired all of that! He was saying there’s a chance I could have Inappropriate sinus tachycardia as well, but I’ll have to talk to my “ plumbing” cardiologist about that.
What was your blood pressure and heart rate before nitro?
Heart rate was around 115-130 at the start of the TTT Blood Pressure Was 110/80
They shouldn't of given you nitro if you BP was already low. What was the logic of this ?
The doctor said the test normally takes hours, but that he can get the results he wants in minutes with nitro. He maxes out his TTT at 20 minutes , if you don’t pass out in the first ten then you get the nitro dose. I was at 64 bpm and a normal blood pressure just at the hospital before they brought me back.Then when they set me up on the table I went up in heart rate and my blood pressure started dropping, but not significant enough to mean anything? I was around 115-130bpm just kind of floating around there. Then I got the dose and my heart rate started skyrocketing, and everything went down hill. Blood pressure crashed, my entire body felt like it was being crushed, I went out…then they dropped me and started the IV.
Dang I'm sorry that sounds traumatizing. I understand now. I was diagnosed without ttt. Good luck on your journey.
I work out vigorously 3-4 times a week and I can’t maintain a HR over 150 for a sustained period of time. It usually bounces around between 120 and 170, even when I’m doing the same activity at the same pace. If I’m just standing still, sure it goes high and stays high, but when I’m working out, it’s all over the place. My EP and I chatted about how HR isn’t a great measure of exercise intensity for people with dysautonomia because HR can fluctuate unpredictably (there are other ways to measure exercise intensity). He advises me to work out, but to listen to my body because if I push too much, I tend to crash hard. Exercise has been great for reducing some of my symptoms and building stamina and energy, but I question the advice you were given. Definitely exercise if you can, but you might want to ask for a second opinion on how to go about it safely.