Low dose beta blocker for P.O.T.S. is WORKING

[aiden424]

I've been on atenolol for a couple years and it's helped some. I used to have to stay laying flat most of the time before atenolol. I can at least sit up now. I wish I could get rid of the POTS. I think it's my worst symptom. Is the adrenalin rush part of POTS or something different. I have to be so careful about any caffeine or any kind of stimulant or I fell so incedibly sick.

I am so super sensitive to everything. Even to take atenolol I had to start with just a small piece of the pill and work up.

 

[BEG]

Is the positive effect from the beta blocker still working for you, Brown-eyed Girl? I am on Florinef for about a month but so far no help with the POTS. I believe adding a low-dose beta blocker is the next step. Were you/are you on Florinef also?

Yes, absolutely it's still working. It's a rather fine line, however, to find the right dosage. I take Bystolic and use a pill splitter to quarter the tablet. Then each morning I shave a bit more off, and now I know the correct size for me. I asked my primary care doctor if I could try it after I did some research on: http://www.dinet.org/ He's open minded about this disease and trusts me.

I've taken Florinef in the past but had little if any success. I do add a lot of salt to my diet to help keep my B.P. up and sip/drink water constantly. My B.P. presents as normal in the doctor's office.

Good luck, sensing progress.

 

[Otis]

B-EG,

Which dosage are you on? 5mg seems to be the most common tablet size so is 1/4 1.25?

I just stared Bystolic and my doc wanted me to start at 1/3-1/2 of the 5mg tab. I couldn't figure out a way to slplit that triangle smaller than 1/2 so I'm taking 2.5mg.

I have POTS but my my BP was suddenly high so my doc started it for that. I seem to have improvements in both BP and HR but no drastic symptom relief yet.

 

[maryb]

Its a funny illness isn't it? I don't have POTS, have FM and ME. I was prescribed Beta Blockers in hospital as I guess they just didn't know what ot do with me, felt like I was dying for the 3 weeks I was one them. Glad they work well for other things though.

 

[BEG]

maryb, Sorry for your experience. Can't imagine what your doctor's reasoning was at the time.

Otis, my tablets are 5 mg. I do cut them in quarters and those little triangle edges I sometimes clip off. In fact, I would say that I really take less than a quarter once I get done cutting them down.

The improvement still goes on although very slowly. When I could stand again, I began to increase strength in my legs which (according to a physical therapist) is a way to increase VO2 max (mine is appallingly low). Stamina has increased somewhat but is still nowhere near what it should be. I am by no means well, but helping the P.O.T.S. has made a difference. Good luck to you.

 

[sensing progress]

Here's a nice write-up by a woman with CFS who took a Beta blocker and found it helpful so far: http://livewithcfs.blogspot.com/2011/01/trying-new-oi-treatment.html

 

[3CFIDS@ourhouse]

I just read an article recently (of course, I have no idea where now) about research on beta blockers that involved tiny doses. I believe the generally effective dose mentioned was 1/8 the normal. This was amazing to me, because a couple of years ago my doctor prescribed a beta blocker and told me to start with 1/2 a pill. Knowing how extremely sensitive to medication I am, I tried 1/4 pill. That was a bit too much, so I figured out that 1/8th pill was just about right. I don't take this every day- but if I have to be in a situation that will cause POTS, I take the beta blocker. It does cause weakness and sometimes even the tiny dose makes my heart feel like it's barely managing to beat, but it has given me a little leeway in being upright for short periods.

 

[Cort]

Its intriguing that Bystolic increases nitric oxide levels in the blood vessels; at least one research study is investigating how important low NO levels in the blood vessels are in CFS.

 

[glenp]

Current

Its intriguing that Bystolic increases nitric oxide levels in the blood vessels; at least one research study is investigating how important low NO levels in the blood vessels are in CFS.

Is that study currently going on now Cort? Where?

I don't know what to try next and my brain isnt working right to figure it, but seems my bp is now high and low same as the heart rate - geez In the morning I take dextroamphetamine (Dr Rowe) and it does help with the blood flow am. So far my heart hasnt been affected.

glen

 

[urbantravels]

I had a tilt table test this morning.

No significant hypotension, but I got POTS. I got lots and lots of POTS. As in, my heart rate went up from 90ish to 142 within the first three minutes, and stayed up around that range for the full 30 minutes of the test. Happily for me, they didn't have to go to the second stage (nitroglycerin challenge) since they had the diagnosis in less than 5 minutes. The nurses were running around trying to get the doctors who had gone off somewhere, assuming there would be nothing to see for at least 10 minutes!

So there I am again, trying to educate a new set of doctors about CFS, and why their blithe recommendation to "do weight-bearing exercise" was a little more complex than they realized. (I may have argued my way into some PT for isometric exercises.) I also keep getting static about the fact that beta-blockers "might increase fatigue." But my primary care doctor is willing to work with me to try whatever beta blocker seems appropriate.

I know Nancy Klimas gives Atelenol 12.5 mg 2x a day - or at least that's what she gave someone I know with NMH. I don't know if the recommendation for POTS would be different. Posts in this topic seem to indicate that low doses are the usual recommendation for POTS with CFS. Does anyone feel that beta-blockers have made them more fatigued? I never had a problem with taking them, pre-CFS, for borderline high blood pressure.

(p.s. They also told me I have an unusually small heart. This was based on having seen my chest X-ray from last year when I was seen in the ER for palpitations. Though I'm pretty sure this is not the primary cause of my POTS, it apparently exacerbates it. I don't like the idea of having a small heart! I thought I was a big-hearted person! )

 

[TinyT]

Hi urbantravels,

Check out this article about POTS, its pretty comprehensive. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

In terms of beta blockers it says 10-20mg twice daily. The recommendations in the article are for POTS only obviously.

I have POTS, similar test results to you actually- my heart rate went from about 80bpm to 150bpm within 10mins of head up tilt. I find a low dose beta blocker (10-15mg, split dose between morning and afternoon) helps with my fatigue a little bit as I'm not constantly tachyardic or in my aerobic zone (plus 118bpm for my age). When I was off my beta blocker for about 3 months waiting to get my tilt table test done I noticed more fatigue due to the constant postural tachycardia and I was much less functional.

Perhaps try a small dose e.g. 5mg in the am for a week or two, then increase to 5-10 mg twice a day? You'll probably know pretty quickly if it is helping.

Good luck

 

[Hope123]

You've probably seen it but I really like Dr. Peter Rowe's talk on POTS/ OI/ NMH in CFS. Dr. Rowe is THE expert on these issues in CFS IMO. The doses of beta-blocker mentioned by TinyT are small compared to what is given for blood pressure and other B-blocker uses and if it causes fatigue, you can always back down or stop the med -- talk to your doc first of course. OI issues don't get mentioned enough and they need to be as they are one part of CFS that is potentially treatable/ improvable.

http://cfids.org/webinar/series2010-past.asp

 

[sensing progress]

I know Nancy Klimas gives Atelenol 12.5 mg 2x a day - or at least that's what she gave someone I know with NMH. I don't know if the recommendation for POTS would be different. Posts in this topic seem to indicate that low doses are the usual recommendation for POTS with CFS. Does anyone feel that beta-blockers have made them more fatigued? I never had a problem with taking them, pre-CFS, for borderline high blood pressure.

Hi UT, I take Atenolol 12.5 mg 2x a day for POTS (as prescribed by Dr. Klimas). I have not noticed any extra fatigue from the medication. It has been fairly helpful. For some reason, less seems to be more when treating POTS with a beta blocker.

 

[TinyT]

Hi UT, I take Atenolol 12.5 mg 2x a day for POTS (as prescribed by Dr. Klimas). I have not noticed any extra fatigue from the medication. It has been fairly helpful. For some reason, less seems to be more when treating POTS with a beta blocker.

Another free full text article if anyone is interested! http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2758650/

It basically says that with beta blockers for POTS, less is more. They compared patients that took 20mg in the mornings with patients who took 80mg. While 80mg caused a greater decrease on standing HR and orthostatic tachycardia, low-dose (20mg) had better symptoms at 2hrs.

 

[BEG]

I found that taking the beta-blocker on a regular basis lowered my blood pressure. Not good. So now I am taking it as needed for tachycardia, palpitations, and the "I'm going to fall to the floor feeling." Perhaps this isn't an appropriate way to take a beta blocker, but it works for me.

Maybe those who experience greater fatigue should take their blood pressure. Maybe the fatigue is coming from a lowered blood pressure.

 

[TinyT]

I found that taking the beta-blocker on a regular basis lowered my blood pressure. Not good. So now I am taking it as needed for tachycardia, palpitations, and the "I'm going to fall to the floor feeling." Perhaps this isn't an appropriate way to take a beta blocker, but it works for me.

Maybe those who experience greater fatigue should take their blood pressure. Maybe the fatigue is coming from a lowered blood pressure.

Yes thats not good! Do you remember what dose it was? some patients need to try different beta blockers or non-selective vs selective beta blocker. Sometimes patients also need to combine it with a vasoconstrictor or fluid retainer

 

[Sherlock]

I found that taking the beta-blocker on a regular basis lowered my blood pressure. Not good.

I know there's a new-ish drug called ivabradine, which gives pure rate control without the BP lowering effect that comes with BBs and CCBs.

The last I know, it's approved in Europe but not in USA. If it's used for POTS, I also don't know.

 

[Francelle]

I started on low dose beta-blockers a few weeks ago ordered by my M.E. doctor after I failed a standing test in his rooms. When I mentioned to my Endocrinologist (who I see for separate adrenal issues) that I was starting Propanolol (beta-blocker) she asked why and I said because I had such a rapid heartrate most of the time and some other signs of OI.

She said to me well a rapid heartrate won't hurt you!! I was a bit taken aback and couldn't really think what to say at the time but on reflection the rapid HR made me feel continually breathless and I was aware of my heart beat pounding through my chest even when not walking. I was also more fatigued - the slumpy kind where you feel heavy in the chest and it pulling you down!

I feel so much better in that department now that I am on beta-blockers. I don't think my Endo gets it somehow even tho' she is a keeper in so many other ways and researches things for me and follows-up stuff! For instance she called a Cardiologist during my appointment after I told her about starting the BB's, to ask him if low dose BB's were ok for me in this case. She couldn't get onto him that day but emailed me a few days later to say that he said yes low dose was ok!

Is there anything I can give her or say to her next time I have a consultation with her? I guess I will just tell her how much better I feel in terms of those previous symptoms!

 

[urbantravels]

Bring her Peter Rowe's handout on orthostatic intolerance. I'm finding that a lot of doctors know even LESS about orthostatic intolerance than they do about ME/CFS - which as you know is a dismally low standard of knowledge!

The rapid heartrate definitely DOES hurt you. I had a hell of a PEM after my tilt table test just from being forced to be upright with my heart pounding and struggling to breathe for 30 minutes. It's not just the rapid heartrate in and of itself, it's what's causing it - your body is being flooded with stress hormones (adrenaline, etc.) to try to maintain your blood pressure - and that is NOT a healthy thing at all.

As for me - I felt a lot of improvement in my POTS on Atelenol 25 mg 2x per day, but a few weeks in, I couldn't help noticing that I was sleeping a LOT in the afternoons - sometimes 4-5 hours or more - while still sleeping a normal night of 8 hours (medically assisted sleep, as always). And I normally don't nap at all - my fatigue doesn't normally express itself as sleepiness. I'm going to try to cut the dose in half for a while and see if I can find a happy medium between POTS symptoms and being zonked all the time.

 

[Francelle]

Thanks Urbantravels, I will try and source that paper of Peter Rowes and see if it will pass her (brilliant) scrutiny.

I did realise as soon as I got home that day that I should have said that PEM was a major outcome of the rapid HR but I was so stunned I couldnt think however whether she would have known much about PEM anyway Im not too sure.