How to Tell a Flare

[MeganMN]

I have a question for those of you that have intermittent flares of symptoms.  The Cardiologist has said to take the Propranolol for at least two weeks before I taper down. How do you know when you can back off? Do you just take medication all the time or do some of you take it just when you have symptoms? Not looking for advice, just what some of you have done.  How will I know when/if this chills out and I no longer need the meds?  Thinking too much, I know......

[Pistol]

@MeganMN - for most of us the meds - especially beta blockers - are needed all of the time. In my case I will need my meds for ever. I take my meds daily but the beta blocker I can take an extra half dose if my HR/BP go up, like in a flare. I have found that I many of us we benefit from taking meds daily to help the body to maintain some sort of balance. This often minimizes the up's and down's of POTS. However - when in a flare we may need to take an xtra dose in addition to rest. So to answer your question: if you feel better on the Propanolol then why would you want to taper down? If you have side effects then you should taper back off if your cardiologist suggested that but if it helps then why would you? --- I wish you greta improvement on the Propanolol, it helps many. 

[RecipeForDisaster]

I take a bunch of my meds daily including the beta blocker, florinef, etc. I take a starting dose of midodrine and mestinon each morning and add more doses if I need them. I can take several more doses of each if it's not a great day. I also add doses if I need to be doing particularly well to get through an activity or just make sure I don't collapse.

I don't do well any day, but some days are worse than others so I need the extra meds available on top of the baseline ones. We are all so different and many can just take meds as they need them. 

[MeganMN]

@Pistol Thank you so much for the response!  I guess, to answer the question about wanting to be off the meds, it is probably because I am still somewhat in denial about the chronic possibility/probability with POTS.  I have had two episodes in the past with this and it went away both times without much treatment.  This time, it has lasted longer. I really do not like taking medication.  I know, it is better than feeling like poop, but it is difficult for me.  I have always been super active, healthy, eat well, and do not like medications!  But yes, I feel amazingly better on the Propranolol, and never even started the Florinef, and still feel a million times better.  I guess I just hope, deep down, that maybe this will pass like the last times.  The nurse at the Cardiology office was probably trying to let me down gently though when she told me not to taper at all until I saw the Electro-Physiologist in mid-January. 

[Pistol]

@MeganMN - when I first started with POTS and had to start a beta blocker I was the same. I asked my PCP how long I would have to take it and he said "most likely for ever". I did not believe him because I had NEVER taken ANY meds before and did noth think I would need them. In my mind this whole POTS thing ( we did not know about POTS at that time,  I was diagnosed with NCS back then ) was only a temporary thing and of course I would be better - and soon! Well - 9 years later, 12 meds daily and fully disabled I could not function without any of them. I love my meds now because they make me better. I wish you will come to LOVE your propranolol too, because that means it helps!!!!

[RecipeForDisaster]

I was extremely hesitant to start any meds at all, particularly any I had to take daily. I'd be sunk without them so little by little I accepted them. It goes against my grain but is clearly needed.