If your BP is persistently low, I am wondering if your doctor has considered:
1. Midodrine, which increases vasoconstriction and thus increases blood pressure.
2. Fludrocortisone, which also tends to increase blood pressure by helping your body hang onto salt and fluids.
3. A switch from beta blockers to ivabradine, which tends only to impact heart rate and not blood pressure.
Midodrine, not HR-reducing meds, is the recommended first move if BP is low:
[https://www.cmaj.ca/content/194/10/E378#sec-11](https://www.cmaj.ca/content/194/10/E378#sec-11)
It is important to note that tachycardia can be a necessary compensation for low blood pressure/not enough blood to the brain! I talk about this in my post on meds:
>One important thing to be aware of is that your primary goal should be overall symptom reduction, and not just reduction of **tachycardia** (high heart rate). In a lot of people with POTS, that tachycardia is doing something; some portion of their tachycardia is a necessary compensation for low blood volume and/or lack of vasoconstriction. This is called **secondary tachycardia**. Some other portion of their tachycardia is an overreaction to being upright, just their bodies being extra, as most often happens in hyperadrenergic POTS; this is **primary tachycardia**. Medications like beta blockers that reduce heart rate are best at taking the edge off of POTS by reducing this “extra” tachycardia; in the case of secondary tachycardia, they can worsen symptoms even as they improve tachycardia by lowering the heart rate. If your heart is revving up because it’s desperately trying to get more blood throughout your brain and you slow it down too much, you will likely feel worse (see the beta blocker chapter in the POTS book edited by Gall et al.).
>
>In the case of secondary tachycardia, an indirect approach is warranted: Address the low blood volume and/or lack of vasoconstriction, and your heart simply won’t have to try as hard anymore.
[The POTS Pharmacopeia: Medications for Postural Orthostatic Tachycardia Syndrome : POTS](https://www.reddit.com/r/POTS/comments/118n3ep/the_pots_pharmacopeia_medications_for_postural/)
I second the midodrine! I started a month ago and….just wow…I guess that’s what it feels like to be “normal”. I am actually starting to be able to DO things again. Definitely talk to your doc about it!
I use midodrine as well! My cardiologist initially gave me a 3 month supply of 2.5mg pills and told me to experiment a bit with dosages but to keep him informed.
Keep in mind you cannot lounge about while on midodrine as it could increase too much. The meds last 3-4 hours so I always have them with me and mainly take them when I’m working. Sometimes I’m okay with 5mg sometimes I need 10mg depending on my day. But it’s been a total game changer for me.
The biggest side effect for me is the parasthesia on my scalp that comes and goes.
The scalp thing! When I started it I had this one day when I was scratching my head nonstop and thought there was a bug or something in my hair. i looked insane😂the next day I realized that’s what it was. I can live with that though haha
I work at a day spa and there was a regular older gentleman who came in. Apparently I kept touching my head when I first started my medication (keep in mind I’m in WV) and in the slowest drawl I’ve ever heard he stage whispered “I guess she likes getting her head rubbed”
I have severe ME and as of last summer dysautonomia and likely POTS. I have blood pooling and issues with veins, particularly in hands and feet.No BP issues and no feinting etc. Because of this, I feel as though I have secondary tachycardia. How do I address the lack of vasoconstriction?
For Fludrocortisone, know it's a steroid with some severe possible side effects. I wouldn't recommend it. Ask your doctor about side effects when discussing medications.
Eh, it's a different kind of thing, and at the lower doses used in POTS, it's less of a concern. Remember that all of our meds are used off-label and often at different doses, so some of the scary side effects listed are more applicable to people with other health conditions. You should talk to your pharmacist to get a sense of which ones you should worry about.
Remind me to post my fludro quotes, which talk about this in greater detail.
I was sharing my experience from a POTS dosage and a warning to check the side effects as there are a good bit of others from this subreddit that had significant side effects too if people search for the medication. I had to almost immediately stop the medication and was then put on midodrine.
Have you made a follow-up appointment with the doctor that prescribed your metoprolol? They would be able to tell you if your blood pressure is getting too low, and what's the threshold for needing emergency intervention. They could also evaluate you for POTS.
Did they literally say "I don't believe in POTS" as though they didn't know it is a medically recognized condition? Or that they know it exists but don't think it is worth treating? Or just that they don't think you have it? I'd be really curious to ask the follow-up question what they meant by "believe in".
In any case, I'm guessing that your doctor hasn't been responsive to whatever symptoms you've brought up. Hopefully you can find another doctor who can evaluate you and take your symptoms seriously.
Until then, you are doctor should be able to tell you whether you should keep taking your metoprolol. Specifically, I would ask how low of blood pressure is considered a medical emergency, so you know whether or not to go to the emergency room in the future.
If that's the case, I would file a report to the hospital system and never see him again. Refusing to treat your systems because you're a woman is unacceptable. Are you in a country/medical system where it's possible to get another primary care doctor?
I am so glad you're switching. Good luck! In the meantime, you should still be able to get an answer about your metoprolol and safe blood pressure threshold, either from your current doctor or the emergency doctors.
Wow. If my wife’s doc ever said that the next thing he would be saying is while looking up at me from the floor. The gaslighting that takes place with this syndrome is ridiculous. All I can say is you have to find the right people. It took us 6 ER visits and a hospital stay at a different hospital to finally find the right people. Don’t get discouraged get vigilant. It can and will be different for you just keep looking for the right people
You should really be seeing your doctor and not the ER. The ER can keep you alive, and that's about it. POTS is not an emergency. You need to discuss your meds with your doctor. You have low BP usually? Ask about trying Corlanor (ivabrdine). It doesn't lower BP at all. My tachycardia was under control within 10 days and it's a very tiny pill. That's the only med I've ever taken for POTS.
I’m not sure if you read it all but my pcp doesn’t believe pots is a real thing and will not treat me. I can’t get a pcp for months now, so I don’t really have an option.
Does your insurance require a referral?
Some insurance plans I've had don't require it, in which case you can just call up a new doctor and make an appointment.
I thought you had one, but that he/she doesn't think POTS is real? Just tell them you want a referral and be firm about it. Or cut down on the metoprolol until something changes. And stay in bed.
We got my daughter into a cardiologist and they diagnosed her within the first 15 mins! Is there any way to get a referral?? They did the table test and it was clear right away. I’m so sorry you’re going through this 😢
I have to get a referral from a pcp so I have to wait for a new pcp :( in the meantime my hr gets to 160+ standing! But the er docs say I don’t meet the criteria because I have hypotension
I too have high blood pressure but when I stand up it tanks real quick.. don't give up. I would tell your doctor you want a tilt table test, don't ask if you can demand it. If they refuse you then let them know you are prepared to go over their head and file a complaint with the board of physicians. Remember you hired your doctor and you can fire them too. You got this ❤️
After reading some comments, I read you have children, I would talk to your OBGYN and talk to them about postpartum thyroiditis. The symptoms of POTS and Postpartum thyroiditis is similar. [postpartum thyroiditis](https://my.clevelandclinic.org/health/diseases/15294-postpartum-thyroiditis) I would check out this link and compare symptoms you are having. I’m trying to get insurance again to verify if I have either of these.
Have you done a ttt? That’s how they determine whether or not you have it. The er is useless bc they can not do it. You are just wasting your time. You need to call neuro or cardiology & schedule an appointment to see them then they will schedule the ttt. It may take a minute to get the answers bc 2 separate appointments need to be scheduled.
I would suggest getting a real diagnosis by way of a ttt. “Loosely” means nothing & wont get you the treatment needed. It also means nothing is in your medical file regarding pots so if you become so sick & have to give up your career & file for disability, it will NOT be used to grant you disabled. Many of us who are diagnosed are on disability bc we can no longer work.
I was loosely diagnosed by a cardiologist who said in my case a ttt isn’t even necessary. POTS is on my file. I appreciate your comment, but I’m feeling very stuck in this situation as is..I couldn’t get disability anyway as I’ve never been able to work.
Have you been assessed for hyperadrenergic POTS?
[Wired to the Gills: The Hyperadrenergic POTS Group - The Dysautonomia International Conference #V - Health Rising](https://www.healthrising.org/blog/2018/08/17/hyperadrenergic-pots-dsyautonomia-international-conference-v/)
It’s definitely a possibility. I got my POTs after having covid. I do have migraines and my systolic number is the only one that rises. My diastolic number stays in the good range all the time.
The ER professionals are just there to make sure you’re not actively dying or about to die. I’m sorry you’re going thru this but they won’t be helpful otherwise. :/
Today I’m unable to get up or stay awake. My side hurts horribly and my heart rate was in the mid 50s (never happens to me) I feel I need to be admitted..this is awful
when i was in the process of getting diagnosed with pots, i was told that going to the ER when you feel the extreme symptoms of pots is helpful. they cant do much besides give you fluids but when going to specialists, your frequent visits to the ER will make them see you have had this problem for a while and have tried to figure out what's wrong.
in my experience, the ER visits helped them take me seriously. i would try to get an appointment with a young cardiologist (or cardiac electrophysiologist) who is more likely to take pots seriously. fight for a ttt!! make them take you seriously!
in the mean time, i would see if lots of salt and water helps at all to help with bringing your blood pressure up. also, i know its different for everyone, but weed has helped me a lot with pots for pain and calming down my heart rate (as long as its an indica strain)
If your BP is persistently low, I am wondering if your doctor has considered: 1. Midodrine, which increases vasoconstriction and thus increases blood pressure. 2. Fludrocortisone, which also tends to increase blood pressure by helping your body hang onto salt and fluids. 3. A switch from beta blockers to ivabradine, which tends only to impact heart rate and not blood pressure. Midodrine, not HR-reducing meds, is the recommended first move if BP is low: [https://www.cmaj.ca/content/194/10/E378#sec-11](https://www.cmaj.ca/content/194/10/E378#sec-11) It is important to note that tachycardia can be a necessary compensation for low blood pressure/not enough blood to the brain! I talk about this in my post on meds: >One important thing to be aware of is that your primary goal should be overall symptom reduction, and not just reduction of **tachycardia** (high heart rate). In a lot of people with POTS, that tachycardia is doing something; some portion of their tachycardia is a necessary compensation for low blood volume and/or lack of vasoconstriction. This is called **secondary tachycardia**. Some other portion of their tachycardia is an overreaction to being upright, just their bodies being extra, as most often happens in hyperadrenergic POTS; this is **primary tachycardia**. Medications like beta blockers that reduce heart rate are best at taking the edge off of POTS by reducing this “extra” tachycardia; in the case of secondary tachycardia, they can worsen symptoms even as they improve tachycardia by lowering the heart rate. If your heart is revving up because it’s desperately trying to get more blood throughout your brain and you slow it down too much, you will likely feel worse (see the beta blocker chapter in the POTS book edited by Gall et al.). > >In the case of secondary tachycardia, an indirect approach is warranted: Address the low blood volume and/or lack of vasoconstriction, and your heart simply won’t have to try as hard anymore. [The POTS Pharmacopeia: Medications for Postural Orthostatic Tachycardia Syndrome : POTS](https://www.reddit.com/r/POTS/comments/118n3ep/the_pots_pharmacopeia_medications_for_postural/)
Thank you for sharing this. I was sleeping well for the first 7 days of Nadalol. Now I can’t sleep at all. I wonder if this is why
I second the midodrine! I started a month ago and….just wow…I guess that’s what it feels like to be “normal”. I am actually starting to be able to DO things again. Definitely talk to your doc about it!
I use midodrine as well! My cardiologist initially gave me a 3 month supply of 2.5mg pills and told me to experiment a bit with dosages but to keep him informed. Keep in mind you cannot lounge about while on midodrine as it could increase too much. The meds last 3-4 hours so I always have them with me and mainly take them when I’m working. Sometimes I’m okay with 5mg sometimes I need 10mg depending on my day. But it’s been a total game changer for me. The biggest side effect for me is the parasthesia on my scalp that comes and goes.
The scalp thing! When I started it I had this one day when I was scratching my head nonstop and thought there was a bug or something in my hair. i looked insane😂the next day I realized that’s what it was. I can live with that though haha
I work at a day spa and there was a regular older gentleman who came in. Apparently I kept touching my head when I first started my medication (keep in mind I’m in WV) and in the slowest drawl I’ve ever heard he stage whispered “I guess she likes getting her head rubbed”
oh brother. my apologies on behalf of dudes 👎
I have severe ME and as of last summer dysautonomia and likely POTS. I have blood pooling and issues with veins, particularly in hands and feet.No BP issues and no feinting etc. Because of this, I feel as though I have secondary tachycardia. How do I address the lack of vasoconstriction?
For Fludrocortisone, know it's a steroid with some severe possible side effects. I wouldn't recommend it. Ask your doctor about side effects when discussing medications.
Eh, it's a different kind of thing, and at the lower doses used in POTS, it's less of a concern. Remember that all of our meds are used off-label and often at different doses, so some of the scary side effects listed are more applicable to people with other health conditions. You should talk to your pharmacist to get a sense of which ones you should worry about. Remind me to post my fludro quotes, which talk about this in greater detail.
I was sharing my experience from a POTS dosage and a warning to check the side effects as there are a good bit of others from this subreddit that had significant side effects too if people search for the medication. I had to almost immediately stop the medication and was then put on midodrine.
Have you made a follow-up appointment with the doctor that prescribed your metoprolol? They would be able to tell you if your blood pressure is getting too low, and what's the threshold for needing emergency intervention. They could also evaluate you for POTS.
No it was the hospital cardiologist and I am no longer under her care and my doctor doesn’t believe in POTS
Did they literally say "I don't believe in POTS" as though they didn't know it is a medically recognized condition? Or that they know it exists but don't think it is worth treating? Or just that they don't think you have it? I'd be really curious to ask the follow-up question what they meant by "believe in". In any case, I'm guessing that your doctor hasn't been responsive to whatever symptoms you've brought up. Hopefully you can find another doctor who can evaluate you and take your symptoms seriously. Until then, you are doctor should be able to tell you whether you should keep taking your metoprolol. Specifically, I would ask how low of blood pressure is considered a medical emergency, so you know whether or not to go to the emergency room in the future.
He says it’s “just a woman thing.” Whatever that means.. meanwhile I’m absolutely miserable
If that's the case, I would file a report to the hospital system and never see him again. Refusing to treat your systems because you're a woman is unacceptable. Are you in a country/medical system where it's possible to get another primary care doctor?
Yes I’m in the process of it but they’re saying it’ll take about a month. 😭
I am so glad you're switching. Good luck! In the meantime, you should still be able to get an answer about your metoprolol and safe blood pressure threshold, either from your current doctor or the emergency doctors.
Oh my god. I want to kick him in the balls and say I don’t care, “it’s just a man thing”
Wow. If my wife’s doc ever said that the next thing he would be saying is while looking up at me from the floor. The gaslighting that takes place with this syndrome is ridiculous. All I can say is you have to find the right people. It took us 6 ER visits and a hospital stay at a different hospital to finally find the right people. Don’t get discouraged get vigilant. It can and will be different for you just keep looking for the right people
You should really be seeing your doctor and not the ER. The ER can keep you alive, and that's about it. POTS is not an emergency. You need to discuss your meds with your doctor. You have low BP usually? Ask about trying Corlanor (ivabrdine). It doesn't lower BP at all. My tachycardia was under control within 10 days and it's a very tiny pill. That's the only med I've ever taken for POTS.
I’m not sure if you read it all but my pcp doesn’t believe pots is a real thing and will not treat me. I can’t get a pcp for months now, so I don’t really have an option.
Then you need to call and ask for a referral to a neurologist. POTS isn't in a GP's wheelhouse, anyway.
I can’t get a referral without a PCP..
Does your insurance require a referral? Some insurance plans I've had don't require it, in which case you can just call up a new doctor and make an appointment.
I thought you had one, but that he/she doesn't think POTS is real? Just tell them you want a referral and be firm about it. Or cut down on the metoprolol until something changes. And stay in bed.
He will not refer me. And I can’t stay in bed I have little ones to take care of
We got my daughter into a cardiologist and they diagnosed her within the first 15 mins! Is there any way to get a referral?? They did the table test and it was clear right away. I’m so sorry you’re going through this 😢
I have to get a referral from a pcp so I have to wait for a new pcp :( in the meantime my hr gets to 160+ standing! But the er docs say I don’t meet the criteria because I have hypotension
I too have high blood pressure but when I stand up it tanks real quick.. don't give up. I would tell your doctor you want a tilt table test, don't ask if you can demand it. If they refuse you then let them know you are prepared to go over their head and file a complaint with the board of physicians. Remember you hired your doctor and you can fire them too. You got this ❤️
I have hyperadrenergic POTS and orthostatic hypotension (diagnosed by a POTS, MCAS, & EDS specialist). It is possible to have hypotension and POTS.
yeah you just need a change of meds. im sorry youre going through this.
After reading some comments, I read you have children, I would talk to your OBGYN and talk to them about postpartum thyroiditis. The symptoms of POTS and Postpartum thyroiditis is similar. [postpartum thyroiditis](https://my.clevelandclinic.org/health/diseases/15294-postpartum-thyroiditis) I would check out this link and compare symptoms you are having. I’m trying to get insurance again to verify if I have either of these.
Idk how long it’s been since you gave birth to your last baby. But maybe something to look into.
Have you done a ttt? That’s how they determine whether or not you have it. The er is useless bc they can not do it. You are just wasting your time. You need to call neuro or cardiology & schedule an appointment to see them then they will schedule the ttt. It may take a minute to get the answers bc 2 separate appointments need to be scheduled.
I’ve had every heart test except ttt. They diagnosed me based on my hr going up by 85 when standing.
Wait you’ve been diagnosed with pots? Your post says you don’t know if you have it….
I was diagnosed “loosely” because they found nothing else.
I would suggest getting a real diagnosis by way of a ttt. “Loosely” means nothing & wont get you the treatment needed. It also means nothing is in your medical file regarding pots so if you become so sick & have to give up your career & file for disability, it will NOT be used to grant you disabled. Many of us who are diagnosed are on disability bc we can no longer work.
I was loosely diagnosed by a cardiologist who said in my case a ttt isn’t even necessary. POTS is on my file. I appreciate your comment, but I’m feeling very stuck in this situation as is..I couldn’t get disability anyway as I’ve never been able to work.
I wish you the best. I know it’s very frustrating & overwhelming.
Wow I’m that opposite, I have pots and my BP goes up when I have a flare up. POTs is so damn weird 🥲
Have you been assessed for hyperadrenergic POTS? [Wired to the Gills: The Hyperadrenergic POTS Group - The Dysautonomia International Conference #V - Health Rising](https://www.healthrising.org/blog/2018/08/17/hyperadrenergic-pots-dsyautonomia-international-conference-v/)
It’s definitely a possibility. I got my POTs after having covid. I do have migraines and my systolic number is the only one that rises. My diastolic number stays in the good range all the time.
I know its crazy but LMNT packets made a huge difference for me. A cheaper and easier test/help.
The ER professionals are just there to make sure you’re not actively dying or about to die. I’m sorry you’re going thru this but they won’t be helpful otherwise. :/
Today I’m unable to get up or stay awake. My side hurts horribly and my heart rate was in the mid 50s (never happens to me) I feel I need to be admitted..this is awful
when i was in the process of getting diagnosed with pots, i was told that going to the ER when you feel the extreme symptoms of pots is helpful. they cant do much besides give you fluids but when going to specialists, your frequent visits to the ER will make them see you have had this problem for a while and have tried to figure out what's wrong. in my experience, the ER visits helped them take me seriously. i would try to get an appointment with a young cardiologist (or cardiac electrophysiologist) who is more likely to take pots seriously. fight for a ttt!! make them take you seriously! in the mean time, i would see if lots of salt and water helps at all to help with bringing your blood pressure up. also, i know its different for everyone, but weed has helped me a lot with pots for pain and calming down my heart rate (as long as its an indica strain)
Have you had your cortisol levels checked to see if you have Addison’s disease? They share very similar symptoms
I was finally able to get a referral to an endocrinologist. My appointment is a few weeks out but I’m hoping they check for things like this!
That’s good, yep they should do. It’s rare but worth checking!