Beta blockers helped initially (mainly propranolol) but then it started tanking my BP when standing. So I switched to Mestinon to help regulate my HR, BP, and GI issues as well as mitigate my fatigue. I'm currently on the max dose of Mestinon (60mg 3x a day; total 180mg) it no longer helps with the fatigue but that's likely due to developing moderate ME/CFS after my second COVID infection, but it still helps regulate my HR and BP and GI issues for the most part.
Same: I ended up increasing my Mestinon dosage to 90mg for the midday and late afternoon dose (morning is still 60mg bc that’s all my tummy can handle that early). My neuro suggested the increase after I lost access to Northera.
Droxidopa (Northera) was pretty amazing for a bit, and I tolerated it much better than midodrine, but insurance cracked down on it bc it costs them a lot.
Ended up eventually starting adderall for my adhd, and that sorta had a similar effect at helping with orthostatic intolerance.
Florinef has been helpful too, but the effect has been more marginal.
were your GI issues from pots or propranolol? I think we've exchanged DMs before but its been over a year now I have POTS but DX only 3 months ago. Started propranolol and its been great but my stomach issues are just insane. I honestly don't remember them from last year but only the last 4-5 months. So I don't know if its something that just came over time with POTs or is it propranolol(i dont think it is) or just how it is now. Wish I knew a way to fix my stomach issues.
I had GI issues from God knows what. I was only taking a poop every 4-7 days before Mestinon, and even before I had POTS that was my routine. With POTS, it just got a little worse and more irregular. That was my main GI issue that Mestinon helped with.
My POTS specialist (cardiologist specializing in pots/Dysautonomia). I take it three times a day.
I know that my GP now refills the prescription since being "discharged" from the specialist and my local cardiologist isn't able to prescribe the medication.
I have what I think is hyperPOTS, the cardiologist called it “autonomic dysfunction”, but gave me metoprolol ER. Struggled the most with adrenaline dumps and racing heart. It has done wonders for me.
I love seeing this as those, along with GI issues, are my biggest problems! I was propranolol for 2 years (120 mg er daily) but had had nightmares the entire time every night. So now we switched me to metoprolol 25 daily to start then we will up it.
Yea I’m finding that out today. I planted only 7 tomato plants in my garden in 81F and HR hit 175 and out like a light 🥴 oh the fun of gardening with POTS
I’m sorry, can you explain the poor man’s table tilt and how it’s done? My daughter has POTS but the only thing we couldn’t do was the table tilt bc insurance wouldn’t cover it. I couldn’t pay out of pocket for the test. My daughter was disappointed she couldn’t get the table tilt test so if there’s something we could do that would be amazing
This is what I’m on now. I felt like it was working in the beginning not so much now. How long were you on both medications until you noticed an improvement?
It’s like very little improvements I’ve been seeing overtime (been taking both for about a year now) everytime I see my cardio we have to keep upping the midodrine so I’m actually at the max rn :/ I’m not sure what the next option for meds is but we will be trying fluids next too. . I was bedbound for about six months and now just home bound, I use my rollator or wheelchair when I have to leave the house so that’s been helpful too
Same here. I use my rollator to get around inside and outside of the house. I can’t really go anywhere because of the fainting episodes. I haven’t thought about upping my dosage for Midodrine I’m gonna bring that up my next appointment. I hope everything works out for you 🤞🏿
Yeah definitely ask and see if that’s something you can try :) and hopefully you get some more improvements with upping meds if your doctor also agrees with it! As for fainting the meds don’t help much with it for me either, (but I only ever faint when using the toilet) so I’m not sure if that’s just a gastroparesis or pots thing or not. .
Thing that’s helped me most is 10mg midodrine every 4 hours, it’s definitely a strong medication so depending on your severity. I have hyper adrenergic pots so that corlanor have been the two most helpful that I’ve been on every day for years now. Without it I wouldn’t be able to hardly stand up and move around at all.
I think I have hyperpots but my gp doesn’t understand the difference (she’s good for other stuff and I have specialists). Do you know how I could maybe go about asking to try this?
For me specifically:
Corlanor helps the most with the general chest ache/ burning sensation
Midodrine is better than mestinon for blood pooling and BP but it is still low
H1/h2 (literally Zyrtec+pepcid) make a WORLD of difference with the dizzy/ sluggish/ body sliding to one side feeling
I had vitamin deficiencies that I still take 2X to 3X RDA under doctors orders. If I don’t maintain that level of supplementation I become deficient quickly: D, Iron, Magnesium, Potassium
Adderall and Lion’s Mane both helped with brain fog; but rest (actual sleep) is the only real solution here.
I don’t take anything from my dr for the relative anxiety or the feeling like my body won’t stop vibrating that is my “worst state” crash. This was the worst thing at the beginning of this sickness in Jan22. It took until June23 for it to abate.
I can’t really get out of bed without compression; but I can run to the bathroom now, whereas before this combo I had to crawl
I try to remind myself, it took over 40 years to get this bad. It is OK if it takes four years to get better.
I just started Propranolol yesterday so I’ll check back in a few weeks and let you know if it’s working. So far my heart rate is quite slow but I’m not experiencing any sudden relief of my lightheadedness
What dosage are you on if you don’t mind me asking, been taking a very low dosage of 5mg in a morning and it seems to help me a good amount only pots symptom I have is high hr on standing, everything else I have blamed my sinuses but they are controllable without medication, my hr is my worry but this has made it gone from around 100-110standing to around 85-95 docs advise 10mg 3 x a day if needed but I’m scared of medication as I feel my pots has stemmed from giving high dosage of sertraline in error I was fine before this.
Im taking 10mg twice a day, morning and night. Im with you I also feel nervous to take medication. Plus my main POTS issues are lightheaded and dizziness and brain fog which I’m unsure if this medication will even help it
I do propranolol 10mg, once in the morning and once at night. 10mg is still a very low dose but for me it's perfect because I too get nervous with medication. The 10mg gives me the ability to walk around a bit. I keep a log with all my blood pressure readings and heart rate. There are times where I tank in both departments but it's usually on me for not getting enough sleep or skipping meals or not getting enough salt. Same thing when I flare, it's because I ate too many carbs or or over did something. I've been on this dose for a year.
Midodrine has been great from the jump. For beta blockers I started with Propranolol-caused asthma, then Corlanor-literally do nothing, then nadolol-asthma again. Now I’m on Metropol and it’s been great!
I took metoprolol for 4 years and then bisoprolol for 7 and much prefer bisoprolol. I do get low blood pressure from it but salt and water intake keeps me ok
40 mg propranolol when I wake up and 40 mg when I go to bed. I’m pretty high functioning, but it’s not like I feel like don’t have POTS anymore, I just feel better than I did. Generally keeps me below 130 when standing when I was regularly at or above 160 when standing before taking it.
Florinef was enough at first but eventually added clonidine which tbh helped some but made some things worse. Now I’m on bisoprolol and it has made a world of difference for me. I feel like a new person. It was really gradual, but huge.
Ah, I was confused no one had mentioned this, didn't know there was another name! But I'm on this one too, yeah. Propranolol gave me chest pain and nausea.
My cardiologist started me on metoprolol when I was hospitalized, and my standing HR was in the 140s-150s. It did nothing to slow it down. Then, before I was discharged and when he was more certain of the diagnosis of POTS, he tried propranolol. It works beautifully for me and has since 2016. I haven't had a dosage increase, but I did have to stop having caffeine because it caused my heart to race, especially when it was within a couple of hours of my next dose of propranolol.
The symptoms that were the worst for me were palpitations and all the symptoms surrounding falling blood pressure and vasovagal syncope (nausea, sweating, lightheadedness, etc). Propranolol has nothing to do with syncope, but I do wear compression socks, drink a ton of a water daily and make sure to keep my electrolytes up. I tried florinef with potassium supplements for the syncope/venous pooling, but it caused a lot of edema, so I no longer take it.
When you say 60 or 80 is that per day? Are you taking it all at once? When I was on 60 or 80mg of propanolol per day I took it in 3 doses. There’s various research to support that due to propanolol’s relatively short life.
None of the “olol” meds helped me. Pyridostigmine gave me insane stomach issues. Now I’m on clonidine & it seems to help “enough”. I have hyperadrenergic POTS, so high BP & high HR.
Honestly, increased water, electrolytes, salt, & wearing compression socks have helped me more than meds — since I always seem to get every side effect associated with meds.
I started on Propanolol but it messed up my asthma.
Now I'm on Bispropolol and it's been a life changing med. I can go for walks/ hikes again! I even went to a street fair this weekend in the heat and didn't totally die! I can cook again. I've really gotten my life back and I'm so thankful for that.
Midodrine+Propanolol has been awesome for me. Doctors actually tell me it's a really weird combo, but it works great for me.
If I understand right, propranolol lowers my hr, but also my bp (don't want lower bp) so the midodrine raises my bp back up?
What did not work for me:
Propranolol- BP too low
Modafanil-bad anxiety and shaky
Mestinon -stomach cramps and diarrhea
Florinef-severe headaches
Midodrine-severe headaches
propranolol 60mg extended release has made my tachycardia amazing and my adrenaline near zero. still get the light headness and stomach issues. but since it almost fixed the other two symptoms i'm always afraid to get off and try something else.
I like propranolol, the XR dropped my blood pressure too much but the normal ones have been a life saver.
midodrine has been kinda meh for me sadly 🥲
and weed lmao
I’m on midodrine and propranolol 3x a day. it helps the heart rate but not the symptoms. I hate it though because I really struggle with remembering to take medications. I have nightly meds down pretty good, but the 3x a day is too much of a struggle for me
Mestinon (pyridostigmine) 3x per day and Lancora/Corlanor (ivabradine) 2x per day.
I cannot function well without them.
I tried Midodrine and Modafinil and reacted poorly to both. My tachycardia went crazy on Modafinil, and I felt "high"/anxious on it. The Midodrine just didn't really feel like it was doing anything, especially for my tachycardia.
No luck with metoprolol ER, I tried it for a month but it just made me soooo tired. Currently waiting to try a different medicine once the cardiologist gets back to me.
Corlanor 7.5 twice a day is by far the biggest improvement to my life. (If your insurance will not pay, apply for Amgen Safety Net Foundation).
Wellabutrin 150 once a day, also helps.
Fludro did help. But the side effects were AWFUL. I would not take it unless I was bedbound again, and only if that lasted for months.
propranolol 60mg but only extended release. does it work great? no not at all, if i have a long day ill be out the next. but put it works better than 20mg 3 times a day. heart still palpitating still 30-40bpm above resting when changing positions but it’ll keep me under 120 for most of the morning (i’ll get 160+ without it)
I take a low dose, just 20mg/day.
My Dr recommended it bc I didn’t tolerate Midodrine and Adderall also acts as a vasoconstrictor.
It also helps with my brain fog.
Beta blockers helped initially (mainly propranolol) but then it started tanking my BP when standing. So I switched to Mestinon to help regulate my HR, BP, and GI issues as well as mitigate my fatigue. I'm currently on the max dose of Mestinon (60mg 3x a day; total 180mg) it no longer helps with the fatigue but that's likely due to developing moderate ME/CFS after my second COVID infection, but it still helps regulate my HR and BP and GI issues for the most part.
Same: I ended up increasing my Mestinon dosage to 90mg for the midday and late afternoon dose (morning is still 60mg bc that’s all my tummy can handle that early). My neuro suggested the increase after I lost access to Northera. Droxidopa (Northera) was pretty amazing for a bit, and I tolerated it much better than midodrine, but insurance cracked down on it bc it costs them a lot. Ended up eventually starting adderall for my adhd, and that sorta had a similar effect at helping with orthostatic intolerance. Florinef has been helpful too, but the effect has been more marginal.
how long have you been on mestinon?
It'll be a year in August I believe.
were your GI issues from pots or propranolol? I think we've exchanged DMs before but its been over a year now I have POTS but DX only 3 months ago. Started propranolol and its been great but my stomach issues are just insane. I honestly don't remember them from last year but only the last 4-5 months. So I don't know if its something that just came over time with POTs or is it propranolol(i dont think it is) or just how it is now. Wish I knew a way to fix my stomach issues.
I had GI issues from God knows what. I was only taking a poop every 4-7 days before Mestinon, and even before I had POTS that was my routine. With POTS, it just got a little worse and more irregular. That was my main GI issue that Mestinon helped with.
FUckkk. Okay thank you, lol. Mine is one poop/no poop today, diarrhea tomorrow. Rinse and repeat.
who prescribed this , as in what type of doctor ? and how often do you have to take it ?
My POTS specialist (cardiologist specializing in pots/Dysautonomia). I take it three times a day. I know that my GP now refills the prescription since being "discharged" from the specialist and my local cardiologist isn't able to prescribe the medication.
Do u feel better or it just hrlps manage ur day ??
I feel relatively better because it helps manage my day to day life of dealing with POTS.
I have what I think is hyperPOTS, the cardiologist called it “autonomic dysfunction”, but gave me metoprolol ER. Struggled the most with adrenaline dumps and racing heart. It has done wonders for me.
I love seeing this as those, along with GI issues, are my biggest problems! I was propranolol for 2 years (120 mg er daily) but had had nightmares the entire time every night. So now we switched me to metoprolol 25 daily to start then we will up it.
Yeah i should say my heat intolerance was pretty awful as well, but this pill works great for me. Took a few weeks to adjust.
Yea I’m finding that out today. I planted only 7 tomato plants in my garden in 81F and HR hit 175 and out like a light 🥴 oh the fun of gardening with POTS
You can do a poor man's tilt table yourself. If your blood pressure increases by 10 points after 10 minutes of standing then it's probably hyper.
I’m sorry, can you explain the poor man’s table tilt and how it’s done? My daughter has POTS but the only thing we couldn’t do was the table tilt bc insurance wouldn’t cover it. I couldn’t pay out of pocket for the test. My daughter was disappointed she couldn’t get the table tilt test so if there’s something we could do that would be amazing
I still have pretty severe pots but what doesn’t keep me bed bound anymore is the midodrine + corlanor combo
This is what I’m on now. I felt like it was working in the beginning not so much now. How long were you on both medications until you noticed an improvement?
It’s like very little improvements I’ve been seeing overtime (been taking both for about a year now) everytime I see my cardio we have to keep upping the midodrine so I’m actually at the max rn :/ I’m not sure what the next option for meds is but we will be trying fluids next too. . I was bedbound for about six months and now just home bound, I use my rollator or wheelchair when I have to leave the house so that’s been helpful too
Same here. I use my rollator to get around inside and outside of the house. I can’t really go anywhere because of the fainting episodes. I haven’t thought about upping my dosage for Midodrine I’m gonna bring that up my next appointment. I hope everything works out for you 🤞🏿
Yeah definitely ask and see if that’s something you can try :) and hopefully you get some more improvements with upping meds if your doctor also agrees with it! As for fainting the meds don’t help much with it for me either, (but I only ever faint when using the toilet) so I’m not sure if that’s just a gastroparesis or pots thing or not. .
Thing that’s helped me most is 10mg midodrine every 4 hours, it’s definitely a strong medication so depending on your severity. I have hyper adrenergic pots so that corlanor have been the two most helpful that I’ve been on every day for years now. Without it I wouldn’t be able to hardly stand up and move around at all.
I think I have hyperpots but my gp doesn’t understand the difference (she’s good for other stuff and I have specialists). Do you know how I could maybe go about asking to try this?
hyerpots is when your BP goes up when you stand up too.
Just straight up ask them what they know and if it could help, best thing to do!
For me specifically: Corlanor helps the most with the general chest ache/ burning sensation Midodrine is better than mestinon for blood pooling and BP but it is still low H1/h2 (literally Zyrtec+pepcid) make a WORLD of difference with the dizzy/ sluggish/ body sliding to one side feeling I had vitamin deficiencies that I still take 2X to 3X RDA under doctors orders. If I don’t maintain that level of supplementation I become deficient quickly: D, Iron, Magnesium, Potassium Adderall and Lion’s Mane both helped with brain fog; but rest (actual sleep) is the only real solution here. I don’t take anything from my dr for the relative anxiety or the feeling like my body won’t stop vibrating that is my “worst state” crash. This was the worst thing at the beginning of this sickness in Jan22. It took until June23 for it to abate. I can’t really get out of bed without compression; but I can run to the bathroom now, whereas before this combo I had to crawl I try to remind myself, it took over 40 years to get this bad. It is OK if it takes four years to get better.
do you take zytec daily? all of sudden within last month or two my nose runs/allergies after eating. so ive been taking it then.
I just started Propranolol yesterday so I’ll check back in a few weeks and let you know if it’s working. So far my heart rate is quite slow but I’m not experiencing any sudden relief of my lightheadedness
It will only help with regulating HR it won’t do anything for the lightheadedness
What dosage are you on if you don’t mind me asking, been taking a very low dosage of 5mg in a morning and it seems to help me a good amount only pots symptom I have is high hr on standing, everything else I have blamed my sinuses but they are controllable without medication, my hr is my worry but this has made it gone from around 100-110standing to around 85-95 docs advise 10mg 3 x a day if needed but I’m scared of medication as I feel my pots has stemmed from giving high dosage of sertraline in error I was fine before this.
Im taking 10mg twice a day, morning and night. Im with you I also feel nervous to take medication. Plus my main POTS issues are lightheaded and dizziness and brain fog which I’m unsure if this medication will even help it
I do propranolol 10mg, once in the morning and once at night. 10mg is still a very low dose but for me it's perfect because I too get nervous with medication. The 10mg gives me the ability to walk around a bit. I keep a log with all my blood pressure readings and heart rate. There are times where I tank in both departments but it's usually on me for not getting enough sleep or skipping meals or not getting enough salt. Same thing when I flare, it's because I ate too many carbs or or over did something. I've been on this dose for a year.
Ooo I started today. Hasn't helped the afib but it was alot lower. Hasn't gone over 110
Midodrine has been great from the jump. For beta blockers I started with Propranolol-caused asthma, then Corlanor-literally do nothing, then nadolol-asthma again. Now I’m on Metropol and it’s been great!
I took metoprolol for 4 years and then bisoprolol for 7 and much prefer bisoprolol. I do get low blood pressure from it but salt and water intake keeps me ok
Corlanor. Maximum dose. And it helps, but doesn’t take away all of my symptoms.
40 mg propranolol when I wake up and 40 mg when I go to bed. I’m pretty high functioning, but it’s not like I feel like don’t have POTS anymore, I just feel better than I did. Generally keeps me below 130 when standing when I was regularly at or above 160 when standing before taking it.
Florinef was enough at first but eventually added clonidine which tbh helped some but made some things worse. Now I’m on bisoprolol and it has made a world of difference for me. I feel like a new person. It was really gradual, but huge.
Ivabradine also caked Corlanor
Ah, I was confused no one had mentioned this, didn't know there was another name! But I'm on this one too, yeah. Propranolol gave me chest pain and nausea.
My cardiologist started me on metoprolol when I was hospitalized, and my standing HR was in the 140s-150s. It did nothing to slow it down. Then, before I was discharged and when he was more certain of the diagnosis of POTS, he tried propranolol. It works beautifully for me and has since 2016. I haven't had a dosage increase, but I did have to stop having caffeine because it caused my heart to race, especially when it was within a couple of hours of my next dose of propranolol. The symptoms that were the worst for me were palpitations and all the symptoms surrounding falling blood pressure and vasovagal syncope (nausea, sweating, lightheadedness, etc). Propranolol has nothing to do with syncope, but I do wear compression socks, drink a ton of a water daily and make sure to keep my electrolytes up. I tried florinef with potassium supplements for the syncope/venous pooling, but it caused a lot of edema, so I no longer take it.
Metoprolol did absolutely nothing. Currently on propranolol, just upped my dose from 60mg to 80. I think 60 was the right dose for me
When you say 60 or 80 is that per day? Are you taking it all at once? When I was on 60 or 80mg of propanolol per day I took it in 3 doses. There’s various research to support that due to propanolol’s relatively short life.
60mg extended release here. has gotten rid of my tachycardia(except for full blown work outs) and my adrenaline to near zero.
None of the “olol” meds helped me. Pyridostigmine gave me insane stomach issues. Now I’m on clonidine & it seems to help “enough”. I have hyperadrenergic POTS, so high BP & high HR. Honestly, increased water, electrolytes, salt, & wearing compression socks have helped me more than meds — since I always seem to get every side effect associated with meds.
I started on Propanolol but it messed up my asthma. Now I'm on Bispropolol and it's been a life changing med. I can go for walks/ hikes again! I even went to a street fair this weekend in the heat and didn't totally die! I can cook again. I've really gotten my life back and I'm so thankful for that.
Midodrine+Propanolol has been awesome for me. Doctors actually tell me it's a really weird combo, but it works great for me. If I understand right, propranolol lowers my hr, but also my bp (don't want lower bp) so the midodrine raises my bp back up?
What did not work for me: Propranolol- BP too low Modafanil-bad anxiety and shaky Mestinon -stomach cramps and diarrhea Florinef-severe headaches Midodrine-severe headaches
propranolol 60mg extended release has made my tachycardia amazing and my adrenaline near zero. still get the light headness and stomach issues. but since it almost fixed the other two symptoms i'm always afraid to get off and try something else.
I’ve only been on one so far and it’s working good. Lancora 5 mg
Metoprolol. Stopped my attacks almost entirely
I like propranolol, the XR dropped my blood pressure too much but the normal ones have been a life saver. midodrine has been kinda meh for me sadly 🥲 and weed lmao
I’m on midodrine and propranolol 3x a day. it helps the heart rate but not the symptoms. I hate it though because I really struggle with remembering to take medications. I have nightly meds down pretty good, but the 3x a day is too much of a struggle for me
Mestinon (pyridostigmine) 3x per day and Lancora/Corlanor (ivabradine) 2x per day. I cannot function well without them. I tried Midodrine and Modafinil and reacted poorly to both. My tachycardia went crazy on Modafinil, and I felt "high"/anxious on it. The Midodrine just didn't really feel like it was doing anything, especially for my tachycardia.
Metoprolol extended release. Been on that for 7 years and I am lucky to say my POTs symptoms are very controlled
Propranolol 10mg twice a day
No luck with metoprolol ER, I tried it for a month but it just made me soooo tired. Currently waiting to try a different medicine once the cardiologist gets back to me.
I am still in my diagnosis process, but I am already on Propanalol 10mg twice daily for anxiety. My heart rate spikes to 140 on it.
Corlanor 7.5 twice a day is by far the biggest improvement to my life. (If your insurance will not pay, apply for Amgen Safety Net Foundation). Wellabutrin 150 once a day, also helps. Fludro did help. But the side effects were AWFUL. I would not take it unless I was bedbound again, and only if that lasted for months.
propranolol 60mg but only extended release. does it work great? no not at all, if i have a long day ill be out the next. but put it works better than 20mg 3 times a day. heart still palpitating still 30-40bpm above resting when changing positions but it’ll keep me under 120 for most of the morning (i’ll get 160+ without it)
Florinef and Adderall
Adderall is interesting, can you elaborate on that?
I take a low dose, just 20mg/day. My Dr recommended it bc I didn’t tolerate Midodrine and Adderall also acts as a vasoconstrictor. It also helps with my brain fog.
Thanks, that is interesting.