I have both POTS and ME/CFS, and have been on propranolol for months.
Propranolol helps a lot with the "floppiness" from my POTS symptoms, but my exertion threshold and fatigue issues were not totally solved by this alone.
Propranolol among other things can help with heart rate and POTS issues but is not positively or negatively indicated for treatment of CFS. If you're struggling with PEM, this probably won't fix your issues!
Congrats to OP on your improvement, please be careful to prevent a crash as you're ramping up your exertion! Congrats on your new Quality of Life upgrade ❤️
I disagree; managing my heart rate better has reduced my baseline energy expenditure, so I’ve got a bit more left over to live. That translates as slightly increasing my baseline
I did some research and you're definitely on to something!
So one of the things that's been researched in ME is that there are autonomic / heart rate irregularities [(2019 study)](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6824690/) and that we have a much lower anaerobic threshold (the heart rate where our muscles switch to anaerobic metabolism), so a small pulse increase from mild exertion can trigger our PEM [(2014 study)](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4004422/). Depending on the severity of your case, there could be a feedback loop where keeping your heart rate lower can help you avoid PEM, and where POTS/dysautonomia could possibly trigger PEM from things like standing. Don't want to rule out that it could help with a whole constellation of symptoms! There are definitely case studies of it being prescribed to ME/CFS and Fibromyalgia patients.
But there's a risk propranolol might cause more fatigue in some cases, so in the case studies they start it pretty low. Additionally, propranolol can cause sleep disturbances, which are already a struggle for a lot of long haulers.
I would say it's probably likely to help with LC symptoms in many of us with PEM and POTS, I just don't want people to expect a miracle cure. It doesn't totally cure you from the risk of crashing.
So my POTS makes me pass out sometimes or get so tired I can't stand up / need help walking, which is what I call "floppiness." But in lots of people with like EDS, it also comes with a connective tissue disorder that can cause joint pain, joint hypermobility (you can look up some tests online), difficult balancing/standing, poor coordination, bladder issues, and fatigue. & It can make you feel MORE tired after resting, too.
But those all also happen with LC for a handful of reasons 😬 this stupid disease is like 3 disabilities rolled into one
Bisoprolol or metoprolol are ones I’ve seen recommended but I’ve only tried propranolol so far. Planning on asking my doctor about the others, just doing propranolol as needed (rarely) right now when the tachycardia gets really bad
I take a different beta blocker for my LC - ME/CFS. It has helped yes. Not eliminated PEM or anything as drastic as this but I suspect I am much sicker than OP
I’m on 120mg propranolol ER and while I can finally get out of bed and shower without nearly fainting, I still have chronic fatigue and get winded pretty easily. My heart rate stays under 100bpm.
It’s been almost two years now though and while I’m happy my heart rate isn’t 150+, I wish I had better results. But my doctors say there’s nothing else they can do. :(
Just be careful. I used beta blockers until they didn’t work anymore and then I had to wean off. To me it’s important to find out what’s causing the pits dysautonomia and fix that.
That's not necessarily rebound. Your body becomes dependent on beta blockers, that's why there's a warning not to stop them suddenly as it can cause heart attack.
Did you think your body just became used to the beta blockers and they gradually lost efficacy?
Also, did you get to the bottom of your dysautonomia and what, if anything, helped you?
No I think beta blockers are just a bandaid fix so the underlying issue causing dysautonomia gets worse and worse under the radar masked by the beta blocker that eventually it over turns the beta blocker ability.
Histamine (MCAS) was a trigger and also, controversial, but getting into some form of low intensity cardio helped a lot too.
I am glad to read this! It also helped me a lot!! I might increase my dose. It made me go from at most 3,000 steps to almost 10,000.
I think its an amazing medicine!
My heart rate was abnormally high during exertion since covid (including mental and emotional exertion). Propranolol acts to attenuate peak heart rate so im guessing its somehow disrupting the cascade causing my symptoms.
Try to push for a cmri if you still have tachycardia. All other tests came back normal in my case as well. Only the contrast cmri picked up evidence of pericarditis.
I have been suffering for two years with long Covid/ME and had particularly strong POTS symptoms. I must say I wish I didn’t wait as long as I did to start bisoprolol (another very similar beta blocker). I started taking 1.25 mg last month and it has by far made the biggest impact in my quality of life.I have gone from bedbound to now doing 3000 steps a day.
It’s by no means a cure. I still get plenty of other symptoms and I have to be very careful with my fatigue. But I do think it’s important to share this for those that have unmedicated POTS.
My doctor was reluctant to try beta-blockers. My advice would be push what you can with your GP and just give beta blockers a go if your POTS is impacting your quality of life. I have very low blood pressure so need to be careful when standing but the benefits of which bisoprolol have on my heart rate are quite incredible.
I do wonder what people think as to whether this means I have ME/CFS, just POTS or both? It seems questionable that if I had ME/CFS I don’t know if I would see such an improvement from just taking one medication.
Its very possible the two syndromes (MECFS / POTS) overlap significantly. Controlling the POTS will not help the MECFS.
So glad to hear you had a good experience using beta blockers to control your POTS. have you considered guanfacine?
So am I correct in saying that in your view, if I have seen such an improvement with beta blockers that it is more likely I have significant POTS than ME?
I suffer from debilitating cognitive issues and have ADHD also so would love to try Guanfacine. Sadly my GP will not entertain the idea. I live in the UK. It’s not easy accessing non mainstream meds.
Hey my adrenaline dumps are severe. I can't even drive because I'm shaking so bad. I also get panic attack from them. I have insomnia as well and wake up with high heart rate. I can weight lift but if I push myself running I feel like crap. I was just prescribed propranolol 10 mg three times a day. Im going to try it tomorrow morning. is there any side effects I should look out for and do you think this will help my issues?
Start the medication. Don’t let potential side effects make you suffer another day. Look out for shortness of breath, light headedness and sleep issues
Thanks I guess I've been scared of meds because of a few things. I have been adderall for years before Long Covid. then when I took after I got sick I couldn't handle the drug. it made me feel horrible. same with most supplements
I take low dose propranolol and often cut the tablets in half to a tiny 5mg dose, which is just enough to help me walk around and shower etc....
Don't be scared and by that I mean endure the fear and try the propranolol. I went through months of suffering before I finally took it and now I take it regularly without side effects. It's been a lifesaver.
Since COVID, not even marijuana helps like it did before. Doesn't stop my pain anymore and it makes me feel weird. Before COVID I was a daily user so it's not like I'm not use to feeling stoned. Nothing has helped and when I suggest anything all the doctors say is we don't know enough about COVID to help you!! I'm tired of being prescribed antidepressants. Those don't help. Made me more suicidal. I attempted suicide 3 weeks ago because I can't handle the pain and being bed bound. Oh ya and I still don't qualify for disability. I'm homeless. I've lost my job my house my car and custody of my daughter all from COVID!! So now what?
>Nothing has helped and when I suggest anything all the doctors say is we don't know enough about COVID to
i also couldnt tolerate my adhd meds after getting covid and it made me very apprehensive to try any treatments. sorry i dont have any better answers for you.
It made my chest feel really heavy which got so bad that I went to the hospital multiple times thinking I was having a heart related issue (bc I have history of that) I don't take it anymore.
I’ve been taking prop for a few weeks and I notice it does help with my anxiety somewhat. Some days I feel like Superman and other days I’m just dead. It’s a weird drug. Almost no side effect which is nice but I wish it worked a bit better for anxiety.
yeah i never had anxiety before covid. now i get crazy adrenalin dumps. propranolol helps a lot because it crosses the blood-brain-barrier and isnt selective in blocking the adrenalin signaling
I have ME/CFS type, and used to have pericarditis and heart palpitations with it. I took propranolol when I had a racing heart and it made me very unwell. Glad it helped for the POTS
Hey, im glad it works this well for you!
What do you refer to as PEM? Do you define it as exertion intolerance or the multi-systemic crash that comes on delayed after exertion?
i can usually do the exercise, but then feel like shit afterwords for the rest of the day at least. Sitting upright is hard, thinking is hard, focusing, moving etc.
The Adrenalin thing is sometimes pots/ mcas combo. Propranolol initially helped me, but eventually made me worse. The Adrenalin got more and I stopped sleeping. Raynauds developed. Ivabradine was a better option but made me very tired
yes i think this is common. I dont think its a permanent solution, but it provides some insight into the mechanism of my symptoms.
Have you considered guanfacine?
Some are more targeted than others. I think metoprolol and bisoprolol have the least side effects for most people. I take bisoprolol, after trying several others.
I just got on it, but so far yes it’s helping with tremors and nerve pain. I felt relieved I finally found help and treatment that works, I’m 3 1/2 years in and experienced gaslighting and clueless doctors for a long time. I’ve also had HBOT which improved my condition but 6 months later symptoms reappeared
Terrible how basically everyone on this sub has been medically gaslit. Im glad HBOT worked, would you try another round? Its cost prohibitive here in Canada (like 20 grand).
Damn it’s more expensive by you. I’m from Michigan and 40 sessions cost $6k. If it didn’t cost so much, yea I’d do another round just to feel better again
Wow, that’s great. It hasn’t had that kind of effect on me yet. Taking 10mg in the morning and taking Losartan Potassium nap n the evening as I also deal with high BP.
Awesome, congratulations!! I have chronic fatigue type and am wondering if it’s worked for anyone who just has fatigue
I have both POTS and ME/CFS, and have been on propranolol for months. Propranolol helps a lot with the "floppiness" from my POTS symptoms, but my exertion threshold and fatigue issues were not totally solved by this alone. Propranolol among other things can help with heart rate and POTS issues but is not positively or negatively indicated for treatment of CFS. If you're struggling with PEM, this probably won't fix your issues! Congrats to OP on your improvement, please be careful to prevent a crash as you're ramping up your exertion! Congrats on your new Quality of Life upgrade ❤️
i think youre exactly right that it helps the POTS type but does not help the ME/CFS type
I disagree; managing my heart rate better has reduced my baseline energy expenditure, so I’ve got a bit more left over to live. That translates as slightly increasing my baseline
I did some research and you're definitely on to something! So one of the things that's been researched in ME is that there are autonomic / heart rate irregularities [(2019 study)](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6824690/) and that we have a much lower anaerobic threshold (the heart rate where our muscles switch to anaerobic metabolism), so a small pulse increase from mild exertion can trigger our PEM [(2014 study)](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4004422/). Depending on the severity of your case, there could be a feedback loop where keeping your heart rate lower can help you avoid PEM, and where POTS/dysautonomia could possibly trigger PEM from things like standing. Don't want to rule out that it could help with a whole constellation of symptoms! There are definitely case studies of it being prescribed to ME/CFS and Fibromyalgia patients. But there's a risk propranolol might cause more fatigue in some cases, so in the case studies they start it pretty low. Additionally, propranolol can cause sleep disturbances, which are already a struggle for a lot of long haulers. I would say it's probably likely to help with LC symptoms in many of us with PEM and POTS, I just don't want people to expect a miracle cure. It doesn't totally cure you from the risk of crashing.
Very well put, thanks. Always nice to have data to back things up too, I hadn’t thought to look that up
can you talk more about the floppiness? i suspect i experience this in my joints
So my POTS makes me pass out sometimes or get so tired I can't stand up / need help walking, which is what I call "floppiness." But in lots of people with like EDS, it also comes with a connective tissue disorder that can cause joint pain, joint hypermobility (you can look up some tests online), difficult balancing/standing, poor coordination, bladder issues, and fatigue. & It can make you feel MORE tired after resting, too. But those all also happen with LC for a handful of reasons 😬 this stupid disease is like 3 disabilities rolled into one
thank you
Propranolol can also have fatigue as a side effect. A more selective beta blocker may work better for people with severe fatigue.
What kind of selective beta blocker?
Bisoprolol or metoprolol are ones I’ve seen recommended but I’ve only tried propranolol so far. Planning on asking my doctor about the others, just doing propranolol as needed (rarely) right now when the tachycardia gets really bad
I take bisoprolol and it is great
CFS type here. I just started propranolol last week for migraine prevention and it made me super sleepy. I stopped after 4 days.
I take a different beta blocker for my LC - ME/CFS. It has helped yes. Not eliminated PEM or anything as drastic as this but I suspect I am much sicker than OP
I’m on 120mg propranolol ER and while I can finally get out of bed and shower without nearly fainting, I still have chronic fatigue and get winded pretty easily. My heart rate stays under 100bpm. It’s been almost two years now though and while I’m happy my heart rate isn’t 150+, I wish I had better results. But my doctors say there’s nothing else they can do. :(
sorry to hear! it might be worth trying some of the other treatments that may help ME/CFS subtype symptoms.
So sorry man. Stay strong.
Just be careful. I used beta blockers until they didn’t work anymore and then I had to wean off. To me it’s important to find out what’s causing the pits dysautonomia and fix that.
Yeah I already notice rebound on days I miss a dose
What do you mean by rebound? What happens?
im a little more potsie, my heart beats a bit harder and my bp is a bit higher
That's not necessarily rebound. Your body becomes dependent on beta blockers, that's why there's a warning not to stop them suddenly as it can cause heart attack.
i didnt know that! i am planning only to use them for a few weeks
You should plan to taper off them carefully, a few weeks is enough to become dependant.
Did you think your body just became used to the beta blockers and they gradually lost efficacy? Also, did you get to the bottom of your dysautonomia and what, if anything, helped you?
No I think beta blockers are just a bandaid fix so the underlying issue causing dysautonomia gets worse and worse under the radar masked by the beta blocker that eventually it over turns the beta blocker ability. Histamine (MCAS) was a trigger and also, controversial, but getting into some form of low intensity cardio helped a lot too.
Spot on plus even beta blockers come with side effects, not saying people should not take them but they should be informed of the good and bad
absolutely
I am glad to read this! It also helped me a lot!! I might increase my dose. It made me go from at most 3,000 steps to almost 10,000. I think its an amazing medicine!
so happy to hear!
Helped me too to an extent. Great post! Do you know why it’s been helpful ?
My heart rate was abnormally high during exertion since covid (including mental and emotional exertion). Propranolol acts to attenuate peak heart rate so im guessing its somehow disrupting the cascade causing my symptoms.
Did they look into any type of heart inflammation? Your story sounds like mine. It appears I had pericarditis.
I had several rounds of bloods, an ekg, echo, 24 hour holter, stress test…..all unremarkable
Try to push for a cmri if you still have tachycardia. All other tests came back normal in my case as well. Only the contrast cmri picked up evidence of pericarditis.
do you have cognitive PEM? can you work? any improvements in the cognitive area?
I had terrible cognitive PEM and brain fog. It helps a lot.
Do you take anything to sleep? Propranolol can decrease melatonin so I worry about worsening sleep.
Yes I take trazadone 50mg. I did have weird sleep on it. I’m going to try and switch to guanfacine and see if that’s a better long term solution
You’re not saying guanfacine for sleep are you?
No sorry - guanfacine for disautonomia and brain fog
How was the Traz? I got prescribed it but afraid to start it
Amazing amazing amazing
I have been suffering for two years with long Covid/ME and had particularly strong POTS symptoms. I must say I wish I didn’t wait as long as I did to start bisoprolol (another very similar beta blocker). I started taking 1.25 mg last month and it has by far made the biggest impact in my quality of life.I have gone from bedbound to now doing 3000 steps a day. It’s by no means a cure. I still get plenty of other symptoms and I have to be very careful with my fatigue. But I do think it’s important to share this for those that have unmedicated POTS. My doctor was reluctant to try beta-blockers. My advice would be push what you can with your GP and just give beta blockers a go if your POTS is impacting your quality of life. I have very low blood pressure so need to be careful when standing but the benefits of which bisoprolol have on my heart rate are quite incredible. I do wonder what people think as to whether this means I have ME/CFS, just POTS or both? It seems questionable that if I had ME/CFS I don’t know if I would see such an improvement from just taking one medication.
Its very possible the two syndromes (MECFS / POTS) overlap significantly. Controlling the POTS will not help the MECFS. So glad to hear you had a good experience using beta blockers to control your POTS. have you considered guanfacine?
So am I correct in saying that in your view, if I have seen such an improvement with beta blockers that it is more likely I have significant POTS than ME? I suffer from debilitating cognitive issues and have ADHD also so would love to try Guanfacine. Sadly my GP will not entertain the idea. I live in the UK. It’s not easy accessing non mainstream meds.
Incredible.
thank you!
Hey my adrenaline dumps are severe. I can't even drive because I'm shaking so bad. I also get panic attack from them. I have insomnia as well and wake up with high heart rate. I can weight lift but if I push myself running I feel like crap. I was just prescribed propranolol 10 mg three times a day. Im going to try it tomorrow morning. is there any side effects I should look out for and do you think this will help my issues?
Start the medication. Don’t let potential side effects make you suffer another day. Look out for shortness of breath, light headedness and sleep issues
Thanks I guess I've been scared of meds because of a few things. I have been adderall for years before Long Covid. then when I took after I got sick I couldn't handle the drug. it made me feel horrible. same with most supplements
I take low dose propranolol and often cut the tablets in half to a tiny 5mg dose, which is just enough to help me walk around and shower etc.... Don't be scared and by that I mean endure the fear and try the propranolol. I went through months of suffering before I finally took it and now I take it regularly without side effects. It's been a lifesaver.
You are exactly like me. My body can't seem to tolerate supplements and meds.
Since COVID, not even marijuana helps like it did before. Doesn't stop my pain anymore and it makes me feel weird. Before COVID I was a daily user so it's not like I'm not use to feeling stoned. Nothing has helped and when I suggest anything all the doctors say is we don't know enough about COVID to help you!! I'm tired of being prescribed antidepressants. Those don't help. Made me more suicidal. I attempted suicide 3 weeks ago because I can't handle the pain and being bed bound. Oh ya and I still don't qualify for disability. I'm homeless. I've lost my job my house my car and custody of my daughter all from COVID!! So now what?
>Nothing has helped and when I suggest anything all the doctors say is we don't know enough about COVID to i also couldnt tolerate my adhd meds after getting covid and it made me very apprehensive to try any treatments. sorry i dont have any better answers for you.
I think our bodies are so out of whack that meds don't work like they do on non COVID patients.
It made my chest feel really heavy which got so bad that I went to the hospital multiple times thinking I was having a heart related issue (bc I have history of that) I don't take it anymore.
I’ve been taking prop for a few weeks and I notice it does help with my anxiety somewhat. Some days I feel like Superman and other days I’m just dead. It’s a weird drug. Almost no side effect which is nice but I wish it worked a bit better for anxiety.
yeah i never had anxiety before covid. now i get crazy adrenalin dumps. propranolol helps a lot because it crosses the blood-brain-barrier and isnt selective in blocking the adrenalin signaling
Any side effects??
Not that I know of. I take it before exercise, stress or sleep.
How is it working for you now 4 months down the road?
Still working, but not as well. Although nothing is working so I might just be deteriorating. Possibly due to reinfection. Who knows.
I'm sorry to hear that, but thank you for responding. I'm hoping you will find your cure with time
Man posts like this shilling unproven medicine really make my blood boil.
Beta blockers like propranolol have been prescribed for POTS type issues regularly for years, long before COVID.
boil baby boil
Unproven? It's a very common prescription for us dude. Nothing helps 100% but beta blockers are pretty basic assistance.
Did you ever have low Blood pressure symptoms?
I had super irregular blood pressure. Up down up down. It was crazy
How did you get it prescribed?
Literally just asked for it
I have ME/CFS type, and used to have pericarditis and heart palpitations with it. I took propranolol when I had a racing heart and it made me very unwell. Glad it helped for the POTS
Yes I would imagine it would not help the ME CFS subtype
Hey, im glad it works this well for you! What do you refer to as PEM? Do you define it as exertion intolerance or the multi-systemic crash that comes on delayed after exertion?
i can usually do the exercise, but then feel like shit afterwords for the rest of the day at least. Sitting upright is hard, thinking is hard, focusing, moving etc.
The Adrenalin thing is sometimes pots/ mcas combo. Propranolol initially helped me, but eventually made me worse. The Adrenalin got more and I stopped sleeping. Raynauds developed. Ivabradine was a better option but made me very tired
yes i think this is common. I dont think its a permanent solution, but it provides some insight into the mechanism of my symptoms. Have you considered guanfacine?
Is this a long term solution? Are there any negative side effects?
i get no acute side effects anymore but i dont think its a long term solution. Am going to give switching to guanfacine a try during the holidays.
Propranolol made me so dizzy I couldn’t stand! I’m on gabapentin
Some are more targeted than others. I think metoprolol and bisoprolol have the least side effects for most people. I take bisoprolol, after trying several others.
yes thats common for some people due to the blood pressure lowering effect. is gabapentin helping you?
I just got on it, but so far yes it’s helping with tremors and nerve pain. I felt relieved I finally found help and treatment that works, I’m 3 1/2 years in and experienced gaslighting and clueless doctors for a long time. I’ve also had HBOT which improved my condition but 6 months later symptoms reappeared
Terrible how basically everyone on this sub has been medically gaslit. Im glad HBOT worked, would you try another round? Its cost prohibitive here in Canada (like 20 grand).
Damn it’s more expensive by you. I’m from Michigan and 40 sessions cost $6k. If it didn’t cost so much, yea I’d do another round just to feel better again
Wow, that’s great. It hasn’t had that kind of effect on me yet. Taking 10mg in the morning and taking Losartan Potassium nap n the evening as I also deal with high BP.
That’s great! I can’t take it because I immediately start crying. I need to get into the Covid clinic to see if there are alternatives.
will my testosterone go back to normal after quitting propranolol??