Beta Blocker for POTS, anyone?

[Sushi]

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.

The batteries don't last long. I take mine to a jewelry shop and have them change the batteries rather than send them back to Polar as they tell you to do. But you can't change the battery in the chest strap in the model I have. I have another brand that allows you to change the battery yourself--much better!

Sushi

 

[Kati]

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?

i can't remember, something like 20 mmHg but I can't tell you exactly. In order for them to be effective, you need to have them on before getting out of bed.

There is a trick to getting them on, the person that fits you will show you how to put them on. it may make a big difference for you so don't let it be a deterrent to trying them on.

it may be useful for you to consider an abdominal binder if abdominal blood pooling could also be an issue.
Some have tried a 'G-suit' which provides a full body compression. Look up G-suit in the search engine.

 

[SDSue]

The batteries don't last long. I take mine to a jewelry shop and have them change the batteries rather than send them back to Polar as they tell you to do. But you can't change the battery in the chest strap in the model I have. I have another brand that allows you to change the battery yourself--much better!

Sushi

The Polar model I have allows me to change the battery myself, which I've done both on my first sensor and now my replacement. Both failed when it was time to change batteries. Makes me think it's user error or a really bad product. There are many bad reviews on Amazon, so it sounds like my experience isn't so unusual?

I actually ordered their oldest strap and sensor just today, as people seem to rate it higher in reliability. We'll see - at least it was less expensive.Starting the beta blocker, I really need to know what's going on with my HR!

 

[Forbin]

When I first became ill in my early 20's, I was given a prescription for Inderal (aka Propranolol). I was not experiencing POTS at the time (later I would), but I believe that Propranolol was given to me as a sort of anti-anxiety medication. Propranolol is used by musicians to combat "stage fright" which would otherwise impact their performances. I believe the idea is that the increased heart rate of "stage fright" turns into a sort of feedback loop setting off other anxiety symptoms like trembling fingers and sweaty palms (bad for musicians). Propranolol prevents that feedback loop from starting. It would appear that my symptoms were initially regarded as anxiety (this was a doctor who once told me that "it might be all in your head").

Anyway, I briefly took Propranolol. I'm not sure what my resting heart rate was before that, but it was driven down to the low 40's. I once measured it as low as 32, though my doctor claimed that I would probably be unconscious at that HR.

I attempted to decrease the dosage by cutting the pills in half - and then in quarters. No matter how little I took, the low heart rate remained unchanged.

Not long after that, I woke up one morning with freezing cold hands - something I had never experienced before. At that point, I stopped taking Propranolol and my heart rate came back up to the mid 50's.

If you have POTS, I could see how it might help some people. Before taking it, however, I would make sure to check your resting heart rate to make sure that it isn't normally on the low side (as was mine). As I would find out later, bradycardia (low heart rate) is actually a contraindication for taking Propranolol.

 

[bel canto]

i can't remember, something like 20 mmHg but I can't tell you exactly. In order for them to be effective, you need to have them on before getting out of bed.

There is a trick to getting them on, the person that fits you will show you how to put them on. it may make a big difference for you so don't let it be a deterrent to trying them on.

it may be useful for you to consider an abdominal binder if abdominal blood pooling could also be an issue.
Some have tried a 'G-suit' which provides a full body compression. Look up G-suit in the search engine.

Hi, Kati - How do you know whether you have abdominal blood pooling? Is it something you need a doc to test for?

 

[Kati]

Hi, Kati - How do you know whether you have abdominal blood pooling? Is it something you need a doc to test for?

I am sorry I can't help you very much other than tidbits of what I have read, that a lot of the blood volume can gather in the abdomen, especially if sitting. I don't know there is a test for that, and whether non-initiated physician could even understand the concept outside of congestive heart failure, which renders the heart unable to process the blood from periphery, creating an overflow in the abdomen below the vena cava.

(oh dear, I hope I make sense)

ETA: oh wait @bel canto I remember Dr Klimas mentioning it during my tilt table test, that blood pools in the abdomen. While tilted, I mentioned to her that my feet felt really huge, but I couldn't see them the way I was tilted. She took a look and indeed they were swollen and purple. For the abdomen it is not as visible especially if you have cushionning around your hips.

 

[Sushi]

Hi, Kati - How do you know whether you have abdominal blood pooling? Is it something you need a doc to test for?

For me this showed up on my TTT, but I had an extended one that included about 5 or 6 other autonomic tests. My doc found evidence of splanchic (abdominal) pooling and said that, for me, this was a greater problem than pooling in the legs and feet. So during my worst times with OI I wore and abdominal binder.

Sushi

 

[SDSue]

When I first became ill in my early 20's, I was given a prescription for Inderal (aka Propranolol). I was not experiencing POTS at the time (later I would), but I believe that Propranolol was given to me as a sort of anti-anxiety medication. Propranolol is used by musicians to combat "stage fright" which would otherwise impact their performances. I believe the idea is that the increased heart rate of "stage fright" turns into a sort of feedback loop setting off other anxiety symptoms like trembling fingers and sweaty palms (bad for musicians). Propranolol prevents that feedback loop from starting. It would appear that my symptoms were initially regarded as anxiety (this was a doctor who once told me that "it might be all in your head").

I'd never heard of using propranolol for anxiety, but it makes sense. What doesn't make sense is all the doctors who claim our illness is in our heads. I don't' think I can respond further about that without using naughty words lol. Feel free to insert those you deem appropriate!

 

[Forbin]

Yeah, I have a friend who is a concert musician and he says that using propranolol is not uncommon. In fact, from what he's said, performers will bum propranolol off each other like cigarettes. I gather it's only used just before a performance.

I'm not sure I had any idea why it was being given to me at the time, but I put two and two together later. Frankly, even after only a couple of weeks of being ill, I probably would have tried any pill that held out the promise of making me feel better. Problem was, of course... nothing did.

 

[Gingergrrl]

i can't remember, something like 20 mmHg but I can't tell you exactly. In order for them to be effective, you need to have them on before getting out of bed.

@Kati and @Sushi I now realize now how incorrectly I was advised re: compression stockings by my former cardio. She did not give me any prescription or TTT and just said I should buy them at CVS and sleep in them at night (but take them off when I woke up.) We bought some random ones at CVS (no idea what strength they were) but they were so tight, I literally could not put them on by myself b/c my arms were too weak. They were very uncomfortable and after a while, I just gave up on them.

Do you think I should ask my new cardio about them? I do not get blood pooling in the sense that my feet or hands do not change colors. Are there other signs? How would I know if I really needed them?

I'd never heard of using propranolol for anxiety, but it makes sense. What doesn't make sense is all the doctors who claim our illness is in our heads. I don't' think I can respond further about that without using naughty words lol. Feel free to insert those you deem appropriate!

Actually beta blockers like Propranolol have been used in "normal" (non ME/CFS or non cardiac patients) for things like test anxiety, performance anxiety such as having to give a speech or sing, etc, for as far back as I know. I had never taken one but knew many people who did. There really was no stigma to it that I knew of in these situations or taking it for true anxiety.

For me, I take a cardio selective beta blocker, Atenolol, b/c it is the only thing that controls my tachycardia. If I were forced to only keep one medication or supplement of everything I take, I think it would be the Atenolol b/c nothing else has worked as well for the tachycardia. But that is just me and everyone is different!

 

[Kati]

@Kati and @Sushi I now realize now how incorrectly I was advised re: compression stockings by my former cardio. She did not give me any prescription or TTT and just said I should buy them at CVS and sleep in them at night (but take them off when I woke up.) We bought some random ones at CVS (no idea what strength they were) but they were so tight, I literally could not put them on by myself b/c my arms were too weak. They were very uncomfortable and after a while, I just gave up on them.

Do you think I should ask my new cardio about them? I do not get blood pooling in the sense that my feet or hands do not change colors. Are there other signs? How would I know if I really needed them?

I can only speak about my own experience. My feet were purple on the tilt table only, but I have noticed if I sit for a long time, my feet will be more swollen. Blood return does not happen very well. i have not worn the compression stocking a whole lot- too much trouble and I have not worn socks at all either in the last year.

Certainly getting properly fitted is important. They should not be totally uncomfortable to wear nor should they fall off your legs. if should feel like your calves are getting hugged and supported. in Canada they are prescription, and you can get insurance coverage for them. They are not the surgica type of ted stockings

 

[Kati]

I wanted to add not to expect miracles from a sinle pair of stocking. They are not cure-all. (i wish) However it is worth trying if you tend to have blood pooling.

 

[Sushi]

Do you think I should ask my new cardio about them? I do not get blood pooling in the sense that my feet or hands do not change colors. Are there other signs? How would I know if I really needed them?

My feet and calves don't change color either. I only know I need them because it is so much easier to stand and walk when wearing them. I buy from Bright Life Direct. For my first pair I had a "consult" over the phone where they asked me to measure things and then they advised me on what might suit me. My insurance doesn't cover them but they are only about $20 per pair for the ones I like. They also let you return them within a month, for any reason, so it is not a financial risk.

For me, the stockings were too much bother and not comfortable. The knee socks I use are mostly cotton and as @Kati said, it feels like my calves are being hugged--they are so comfortable I don't notice them. I use ones that are 20 - 30 mmHg (there is more compression at the ankle and then it is "graduated" up to the knee. I've tried different styles but this is the one I like best.

You could ask your cardio...or just try a pair. When I am lying on the couch I fold them down, then pull them up again when I stand or sit.

Sushi

 

[Gingergrrl]

Thank you @Sushi and that looks much better than what my former cardio recommended we buy at CVS! I bookmarked your Bright Life page to save it for later.

 

[Sushi]

Thank you @Sushi and that looks much better than what my former cardio recommended we buy at CVS! I bookmarked your Bright Life page to save it for later.

If you look around on http://www.brightlifedirect.com/ you will see a huge variety of brands, styles and levels of compression. I've tried ones with less compression and ones with more, but I am in the Goldilocks category for what helps most--the middle. The 15's are not enough and the 30 + are too tight and thus uncomfortable.

CVS is not going to cater so well for to Goldilocks-types! They will carry mostly surgical stockings and socks.

Sushi

 

[Kati]

@Gingergrrl one great use for compression stockings (knee high for me) would be on prolonged road trips like when you went to SFO bay area or if you had a special outing.

 

[Gingergrrl]

@Sushi and @Kati I am definitely calling Bright Life to order a pair of these and for $20 have nothing to lose! I know they are not a miracle cure but if they can in any way make walking easier, I want to try them. Great idea, Kati, re: wearing them for my next road trip to OMI (probably in the summer.)

 

[Sushi]

@Sushi and @Kati I am definitely calling Bright Life to order a pair of these and for $20 have nothing to lose!

For me they make being upright just that bit easier--enough for me to put them on everyday. BTW, their size chart doesn't work for everyone--it is probably made for average height. I am tall and need to order one size larger, so that is something to ask about.

Good luck with this!
Sushi

 

[SDSue]

Bright Life is about to have a run on compassion stockings!

 

[Gingergrrl]

Bright Life is about to have a run on compassion stockings!

@SDSue I think you meant compression stockings BUT I like compassion stockings better and that will be our special PR version .