Beta Blocker for POTS, anyone?

[SDSue]

After failing on midodrine and florinef for POTS, I've just begun propranolol 5 mg. So far, so good.

My heart rate is a comfy 58 sitting and stays under 80 when I'm up. (miracle!!!) I no longer feel my heart pounding and my head isn't bobbing in time with my heartbeat (I'm a living bobble head!) I also feel calmer, like my body isn't on a high speed adrenalin rush, which in my case is a really good thing; a good thing I hope can translate to less energy used on autonomic functions and more on daily tasks.

However, my BP is a little concerning. My sitting systolic has stayed the same (138) but my diastolic has gone up from 83 to 98. The good news is that BP stays stable when I'm up (normally my pulse pressure drops like a rock to around 10)

I noticed in a recent post (no clue where ) that beta blockers are ranked as the number one worst treatment experience for most PWME, which concerns me.

Does anyone have experience with beta blockers? I'd love to hear your tales, both good and bad. For example:
Do you use as needed, or every day regardless of symptoms?
Do you combine with other dysautonomia meds?
Did you have success with BB's initially, only to have them fail within a short time?
Etc.

Thanks so much!

 

[deleder2k]

I take 20mg propranolol if my pulse is over 100. If it is very high I take 40mg. I experience no side effects. One year ago I took it several times daily, but I've found out that I only need it 1-2 days a week, so now I only take it when I need it.

 

[Revel]

@SDSue, I tried propranolol for 6 weeks. It was a dreadful experience, I struggled to get off the couch and, when I managed to, I felt horribly faint and nauseous.

I had a similar experience with another beta blocker (the name escapes me).

I am currently taking Ivabradine. It has put a ceiling on my high spikes. I'm still struggling with tachycardia daily but no longer at the exteme end of the range. So far it's been the only drug I can tolerate.

 

[SDSue]

I take 20mg propranolol if my pulse is over 100. If it is very high I take 40mg. I experience no side effects. One year ago I took it several times daily, but I've found out that I only need it 1-2 days a week, so now I only take it when I need it.

Thanks so much. It's good to know you are successfully using it as needed rather than every day. I'm also really happy to hear you've been using it successfully for over a year, as so many treatments work for a short time and then fade away.

I'm pleasantly surprised by the overall calmness I feel, and I might actually have less brain fog (jury is still out on that, but I'm hopeful!) It has definitely helped my non-stop pounding headaches.

Did you start our at 20 mg or did you build slowly to that dose? Also, how many times do you take it on those 1 to 2 days per week? Thanks!

 

[SDSue]

@SDSue, I tried propranolol for 6 weeks. It was a dreadful experience, I struggled to get off the couch and, when I managed to, I felt horribly faint and nauseous.

I had a similar experience with another beta blocker (the name escapes me).

I am currently taking Ivabradine. It has put a ceiling on my high spikes. I'm still struggling with tachycardia daily but no longer at the exteme end of the range. So far it's been the only drug I can tolerate.

I think your experience must be typical, based on the huge percentage of PWME who fail miserably with beta blockers. No wonder they have such a bad rep!

Note: Ivabradine was mentioned as my next option if I fail on propranolol. I may be back asking you more questions if it comes to that!

 

[OverTheHills]

I take 20mg propanolol twice daily every day. It is my most essential med/supplement, as soon as I try to reduce/stop I get drastic worsening of OI(POTS) symptoms which puts me near housebound. I don't get any noticeable side effects and I've been taking it for about 3 years.

My POTS tendency pre-dated ME (remember it mildly when at school) but now I can't exercise the BB is essential for me to keep POTS under control.

Hope this is helpful
OTH

 

[SDSue]

@OverTheHills Thanks! It's actually quite helpful to hear your experience.

Looking back, I too can see that I had standing still OI issues as far back as my teens. I never liked standing in lines. I was always quite restless and looking for a place to perch. I assumed it was because I'm so tall (funny how we explain away symptoms!). Every picture of me standing from early on I have my legs crossed, which I now know is a technique for pumping blood. ME just put the whole thing in over-drive!

It is my most essential med/supplement, as soon as I try to reduce/stop I get drastic worsening of OI(POTS) symptoms which puts me near housebound.

I hope I can say the same!

 

[Gingergrrl]

@SDSue I take Atenolol (which is a cardio selective beta blocker unlike Propranolol which is more general) and about 95% of the time it controls my tachycardia which was literally going into the 160's and 170's without it.

I am currently taking 1/4 pill AM (6.25 mg) and 1/2 pill PM (12.5 mg). Without the beta blocker, I literally would have no quality of life and I mean zero. I take a very low dose which is all that I need. My cardio, Endo, and CFS doctor all feel it is the right med for me and I agree.

I know many people think BB's are bad but I am not one of them. It not only helps my IST and POTS but also with angina and chest pain (we think I get microvascular angina spasms as part of PEM sometimes.)

I initially tried Metoprolol at beginning of 2013 when this all started but had some side effects that I do not have with Atenolol.

Just my two cents...

 

[deleder2k]

Thanks so much. It's good to know you are successfully using it as needed rather than every day. I'm also really happy to hear you've been using it successfully for over a year, as so many treatments work for a short time and then fade away.

I'm pleasantly surprised by the overall calmness I feel, and I might actually have less brain fog (jury is still out on that, but I'm hopeful!) It has definitely helped my non-stop pounding headaches.

Did you start our at 20 mg or did you build slowly to that dose? Also, how many times do you take it on those 1 to 2 days per week? Thanks!

20 mg is the lowest dose one can get in Norway. Propranolol is available in 20mg, 40, and 60.

 

[SDSue]

Thanks @Gingergrrl ! I'm starting to gather that there's a small percentage of PWME for whom a BB is a good fit (POTS people?). I sure hope I'm one, as it's inexpensive and easy. When it wears off, my headache comes back with a vengeance. Seems it only lasts about 4 - 5 hours.

@deleder2k I think here it comes in 10, 20, 40, 60, or 80 mg tablets (also there's an extended release form). I got the lowest dose available (10mg) and only took half a pill for now. "Low and slow" is my motto. Let's just say I've learned that the hard way!

 

[bel canto]

I've used small dose (25mg) atenolol for POTS for 20+ years, at bedtime. It's rare that I miss a dose, but I immediately know when getting going the next day - significant tachycardia.

 

[Kati]

Same, I've been on 12.5 mg twice a day. I feel ok when i take it, and the problems start when I stop taking it (for upcomimg tests for instance)

 

[SDSue]

Thanks so much for sharing your experiences @bel canto, @Gingergrrl , and @Kati .

Does the Atenolol dilate peripheral vessels like propranolol? Already, after just a few days on propranolol, my peripheral neuropathy and blood pooling in feet and hands is significantly worse. Seems I'd do better with the more cardio-selective atenolol?

 

[Kati]

Thanks so much for sharing your experiences @bel canto, @Gingergrrl , and @Kati .

Does the Atenolol dilate peripheral vessels like propranolol? Already, after just a few days on propranolol, my peripheral neuropathy and blood pooling in feet and hands is significantly worse. Seems I'd do better with the more cardio-selective atenolol?

Hi @SDSue i did not have this problem with Atenolol even though I have had blood pooling on the tilt table test. The TTT and Atenolol RX were done and prescribed by Dr Klimas by the way.

i am not familiar with Propanolol so I can't comment further.

 

[SDSue]

Hi @SDSue i did not have this problem with Atenolol even though I have had blood pooling on the tilt table test. The TTT and Atenolol RX were done and prescribed by Dr Klimas by the way.

i am not familiar with Propanolol so I can't comment further.

Thanks! I'm a patient at INIM, so I will give them a call and see if they can't change my Rx. It's definitely worth a try. I'm glad to hear you don't have pooling trouble on Atenolol - it gives me hope!

 

[bertiedog]

Hi @SDSue I have been taking Propananol for over 10 years now because POTS and its always made me feel better, never worse. In fact I cannot manage without my one dose daily (sometimes I need another dose of 20 mg especially if it is hot and/or I am doing quite a lot).

It has helped me to be quite active on some days and allows me to walk my dog daily by keeping my heart rate down a bit, even so it will go to 135 beats a minute on a walk which I think is quite high for somebody of my age (66).

I should add I am also steroid dependent because of adrenal insufficiency and I take 2 grains dessicated thyroid too. In the summer occasionally I also need a tiny dose of Fludrocortisone but not in the winter.

Definitely I create too much adrenaline and it seems to cause a lot of my worse symptoms but the Propananol helps to keep this under control. I woud like to know why some of us have this hyper adrenaline thing going on because in myself I am pretty calm most of the time but the adrenaline thing just takes over if I wasn't to take the Propananol.

Finally should also add this last July I was diagnosed with late stage Lyme by Infectolab and also a probable co-infection, Ehrlichia. Because of this I have been taking a herbal protocol but this hasn't upset the adrenaline thing thankfully and I seem to be able to walk a bit better.

Pam

 

[Kati]

Hi @SDSue, if the blood pooling remains an issue, i would suggest you consider prescription compression stockings. I have used them in the past, the ones that go to the knees. They are less difficult to put on than the thigh high ones and less hot as well. Your dr ned to mention how much pressure Hg you need and you need to be fitted at the pharmacy. They cost around 100$ in Canada but those were covered by my insurance company.

 

[SDSue]

Definitely I create too much adrenaline and it seems to cause a lot of my worse symptoms but the Propananol helps to keep this under control. I woud like to know why some of us have this hyper adrenaline thing going on because in myself I am pretty calm most of the time but the adrenaline thing just takes over if I wasn't to take the Propananol.

Thanks! I'm not sure of the feedback mechanism that kicks in with propranolol, but was quite surprised that it calmed me. I thought beta blockers caused a rise in norepinephrine, but I must be mistaken. Either way, I like that effect. I've called my doc to see if I can try atenolol instead since I'm having more peripheral pooling and worsening of neuropathy on propranolol.

I'm quite encouraged that so many have taken beta bookers successfully for years!

Hi @SDSue, if the blood pooling remains an issue, i would suggest you consider prescription compression stockings. I have used them in the past, the ones that go to the knees. They are less difficult to put on than the thigh high ones and less hot as well. Your dr ned to mention how much pressure Hg you need and you need to be fitted at the pharmacy. They cost around 100$ in Canada but those were covered by my insurance company.

Great suggestion. It's as if I need a beta blocker for my heart and vasoconstrictors for my extremities. This might just do the trick. What pressure did you use?

 

[Hell...Hath...No...Fury..]

@SDSue i didnt have fun on the beta blockers, bisoprolol. They lowered my heart rate but also caused extreme tiredness (like extreme normal tiredness) on top of the ME exhaution.

They also caused random unconsciousness on the floor a couple of times a week lasting hours.

I'm now on calcium channel blockers, my heart rate monitor is bust so i have no definite way of knowing the exact effects right now but they're mild enough to not cause extra problems.

If you get the support stockings, i'd deffo recommend getting some aid to put them on, even if knee length.

I haven't been able to wear mine yet that i got from hospital a few months ago as i can't put them on or take them off. I'm waiting till my next appointment in Feb to hopefully get a device to help to put them on otherwise they'll never be worn.

Its great the Beta blockers are helping you a little. I hope they continue to work for you

 

[SDSue]

They also caused random unconsciousness on the floor a couple of times a week lasting hours.

I'd definitely classify this as "no fun"! Yikes!

my heart rate monitor is bust so i have no definite way of knowing the exact effects right now but they're mild enough to not cause extra problems.

Is yours by any chance a Polar? I've had nothing but trouble with mine - they're great when they work but 2 or 3 months isn't a very long life for the expense.

I haven't been able to wear mine yet that i got from hospital a few months ago as i can't put them on or take them off.

I'll be eager to hear how this goes. I had compression tights and there was no way I could even get them past my calves. I wore myself completely out and never tried again.