AmberK Posted June 30, 2012 Report Share Posted June 30, 2012 A brief update for anyone that hasn't seen my previous posts: After almost 19 years ill, and finally getting somewhere when investigated for POTS, I had a tilt table test, but no resting heart rate was taken. My pulse went up to 126 in the first 10 minutes, and I fainted at 32 minutes, but it was concluded as "not classic POTS" because the heart rate didn't raise 30 bpm or more (as the "resting" rate was taken with only seconds horizontal).The consultant has decided to treat me for POTS anyway, and after going to the GP yesterday (and waiting in a hot waiting room, -resulting in another faint) I have been prescribed Labetalol. I used to have asthma, so the GP is reluctant to start me on anything other than a very low dose (50mg twice a day), and is also concerned that a beta blocker may lower my blood pressure instead of just my heart rate, which would be unfavourable.I am so relieved that even though it looks like still a long road ahead for a firm diagnosis (I've written to my consultant about my concerns over the lack of resting heart rate taken, so we will see what he says), I am at least being treated for the thing that it's looking very likely to be!So my question is, has anyone had any luck with Labetalol? Has it been effective for any of you? Quote Link to comment Share on other sites More sharing options...
arizona girl Posted June 30, 2012 Report Share Posted June 30, 2012 Hi yes, I'm on it on the same baby doses you are being prescribed. It is an alphabeta. It is one of two drugs that Dr. Grubb in toledo, prescribes for his hyper patients who's bp goes up on standing along with the heart rate, we are also swingers though because we drop significantly when lying down. We can also get syncope when we can't maintain the high bp/hr. I tolerate the labetalol well, I am using less and less of it because we are now actually treating the cause of my pots/dysautonomia.They didn't let me rest long enough on my ttt either. It is real easy though to get your own baseline bp/hr. All you need is your own bp monitor that records more then one measurement. First thing in the morning as soon as you wake up before you move take your bp/hr while still lying down. Do that for a week or so every day and you will have your baseline. You can then show that to the doctor.I would agree your test wasn't as well done as some are. The best ones check your bp/hr and catchelomines. The fact that you fainted also means you have a form of syncope or hypotension not just pots. Which is also common with dysautonomias Quote Link to comment Share on other sites More sharing options...
AmberK Posted June 30, 2012 Author Report Share Posted June 30, 2012 Arizona Girl, thank you so much! I really haven't been told much of what's going on, so your post has been really informative and helpful, thank you. I did buy a pulse oximeter, and have been doing my pulse with that, but haven't got a bp monitor. The GP took my pulse yesterday after a few minutes resting, and it was 88, a bit different from the 105 stated as my resting rate on the test! I've found it to be between 80 and 85 most days. It makes sense what you're saying about the bp raising and then a sudden drop and faint when we can't maintain the high bp anymore. A few minutes after I fainted yesterday at the doctors appointment, they took my bp and it was higher than my usual reading, which confused me, until they explained the bp often does that after a faint as you're in recovery again.Just one question, if you don't mind me taking advantage of your help. You said I also have some form of syncope or hypotension not just pots, but I assumed the syncope was part of the pots? Syncope is one of my main symptoms so it's why I was being investigated for pots. Is syncope a separate condition then?Thanks again Arizona Girl, I really appreciate your post. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted June 30, 2012 Report Share Posted June 30, 2012 yes, if you go to dinets my web page there is quite a bit of information about the different kinds of dysautonomia. Dysautonomia syndromes can be an alone diagnosis but more often it is a result of another condition. It can manfest as just pots which is only the rise in heart rate, hyper pots with a rise in heart rate and blood pressure, hypotension drop in blood presseure on standing, and syncope that can result from to low blood pressure or a sudden drop as occurs with us hypers. They can have more then one. Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted June 30, 2012 Report Share Posted June 30, 2012 If you read Dr Raj's summary article (in my opinion the best overall summary of POTS),, he says 30% of POTS pts have syncope. Quote Link to comment Share on other sites More sharing options...
jrlehnardt Posted July 1, 2012 Report Share Posted July 1, 2012 arizona girl- you mentioned dr. grubb uses labetatol for his hyper patients and one other drug. if you dont mind me asking what is the other one he uses? Quote Link to comment Share on other sites More sharing options...
AmberK Posted July 1, 2012 Author Report Share Posted July 1, 2012 Thanks all. HyperPOTS8, I haven't found a summary article, but am making my way through a longer version, thanks. It's been very interesting reading so far. Quote Link to comment Share on other sites More sharing options...
AmberK Posted July 1, 2012 Author Report Share Posted July 1, 2012 Oh, one more thing...How long should it take to see some improvement with Labetalol? Thanks. Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted July 2, 2012 Report Share Posted July 2, 2012 The other drug used most commonly for hyperPOTS besides labetolol is clonidine. Quote Link to comment Share on other sites More sharing options...
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