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MeganMN

How to treat intermittent symptoms- New diagnosis of POTS

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Hello all, I recently had syncope in the hospital where I work as a nurse- good place to hit the floor, I guess. I had been having noticeable tachycardia and dizziness for a few weeks, but had also been dealing with major life stress and have three young kids, so chalked it up to not taking good care of myself.  I ended up getting admitted for observation and the telemetry monitor showed significant orthostatic changes. My blood pressure always went up but my heart rate consistently went from the 80's to the 150's.  I had a similar episode 6 years ago after a course of Prednisone and the doctors at that time did not figure anything out and I never got diagnosed. This time, with my history as well as obvious positional tachycardia, they diagnosed me with viral-onset POTS and sent me home with a script for an antibiotic for a wicked sinus infection and a referral to cardiology.

When I think back on my life I can connect so many dots that all make sense now in light of the diagnosis. It seems to be right on with how I have been feeling and have felt in the past.  I was started on Metoprolol 25mg twice a day with the potential addition of Florinef. My blood pressure before the Metoprolol has always been low, in the 100/60 range. I felt amazingly better on the Metoprolol at first but am now having to cut the pills in half because my blood pressure is too low, making me dizzy again.  I have recently noticed that one day, my heart rate might be in the 130's when up, and other days it is in the 50's and 60's.  I am struggling with what to do with the Metoprolol. I like that it makes me feel better most days, but I cannot seem to get a handle on it because there is such day to day variation in my heart rate and blood pressure. So I feel good when the med keeps my heart rate in the 60's to 80's with a normal BP, but feel like poop on the days when my heart rate drops into the low 50's and my BP drops as well. Any suggestions for what has worked for those of you with wildly intermittent symptoms? Is there anything that can be taken on a more 'as needed' basis for heart rate control? Thanks! It has been so helpful to read through this forum!

Megan

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Hi Megan,

You are experiencing the rollercoaster of symptoms. We go high, we go low, anytime. My EP has been tweaking my drugs ever so slowly to find a happy medium so that my BP is high enough that when I do have a drop it will not be so low as to make me collapse. We may be at that right now, crossing fingers. I still get drop attacks everyday but I don't drop anymore. I do also see a DPT for core, balance and strength; I would say that PT is equal to the drugs in helping my symptoms especially for dizziness--I was diagnosed with vertigo also, sigh, so vestibular PT is part of that. Over the next several months or couple of years your doctors will work with you to find the best combination of meds and management. It can take a while to get you to your best. You will manage this fine but learning how doesn't happen overnight.  

 

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@MeganMN - I too was a nurse and passed out at work in the hospital soooo many times … I was on Metoprolol and the same thing happened to me. Now I am on Carvelidol and it keeps my HR and BP in line for the most part. I would recommend to cut the Metoprolol in half and then go up a little if needed. I encountered that the Metoprolol worked for a whike and then stopped working, so we had to keep going up and up slowly. Same thing with Carvelidol - I started at 3.25 mg and now take 25 mg but it is still working ( although I take several other cardiac meds ). Good luck!!!!!!

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Midodrine is one drug you can take as needed, intermittently. Compression is something else you can add in when you need it. My cardiologist assured  me that metoprolol really doesn't affect BP at these low doses. I have confirmed that is true with hourly logging, comparing days with and days without metoprolol. My BP is very low anyway so I wouldn't be able to afford it going lower.

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I take pindolol.  It does not cut bp as much as other beta blockers, from what I understand.  My doctors have told me I can take it as needed, or at least, increase when needed.  I take a very small dose on a daily basis but I do increase it on days when my symptoms are worse.

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Talk to your doctor about midodrine. I take both. I take 25mg metoperlol tartrate 2x a day and up to 5mg midodrine up to 3x a day. Every time I check my blood pressure it is normal. The metoprolol lowers and the midodrine ups it back. I can also take an extra metoperlol in the afternoon if my heart palpitations act up but that is very rare. 

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I have metropolol too and have the same issue with it.....I take it when my BP and heart rate go very high sitting.....that for me is called "an attack"  I don't know what causes them but they are horrible..my BP goes up to 225/120  and my pulse will go up to 130 or more.....65 resting....so ya it freaks me out and I take the metropolol...but I don't think it helps too much..maybe because I am afraid to take a larger dose of it.....but I only take it when I have "attacks"   which I hope will not be that often....they have been about once a week lately ..but that is only because I am mostly bedridden...ugg this is horrible

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Thank you so much to everyone for the responses.  I am going to see the Cardiologist on Tuesday and am really inclined to ask for Propranolol instead of Metoprolol.  When I had the undiagnosed 'episode' seven years ago, they gave me Propranolol for a short time and it worked really well without all this sluggishness and low heart rate that I am experiencing now.  I was trying to research and do some homework before I go, because I have heard from others that this particular Cardiology group really does not like to prescribe Propranolol, but I already know that it helped me in the past, so I am feeling a bit frustrated.  Any ideas on how to suggest it to the Cardiologist?  I definitely feel better with the Metoprolol than I did before, but I feel so out of it, too.  Thank you so much to all of you!  Dislike that any of us have to be here searching for answers, but glad to know there are others out there to lean on.  

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@MeganMN - I would tell him exactly what you tell us, that the metoprolol causes you to have bradycardia and fatigue and that you would like to try propranolol. I have already askes my PCP and cardiologist for certain labs or about meds that have been recommended on this forum and they both were happy to try whatever I ask for. They know that I do my research and also check with this forum on certain things and they know that I keep more informed on anything POTS than they are. Having said that - your cardiologist may not be as open to suggestions, but he works for YOU. If you tell him why you would like to try this med and he has no real reason that would prevent you from trying it he should be willing to give it a try. This whole dysautonomia thing is all about trial-and-error. Good luck - keep us posted!!!!

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10 hours ago, Help4Me said:

I have metropolol too and have the same issue with it.....I take it when my BP and heart rate go very high sitting.....that for me is called "an attack"  I don't know what causes them but they are horrible..my BP goes up to 225/120  and my pulse will go up to 130 or more.....65 resting....so ya it freaks me out and I take the metropolol...but I don't think it helps too much..maybe because I am afraid to take a larger dose of it.....but I only take it when I have "attacks"   which I hope will not be that often....they have been about once a week lately ..but that is only because I am mostly bedridden...ugg this is horrible

I would try taking it every day or 2x a day. Whatever is prescribed. If you don't take it as directed you can have rebound tachycardia. My PCP like to fuss at me for not taking it 2x a day because of that. It may help more by taking it as directed. 

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8 hours ago, MeganMN said:

Thank you so much to everyone for the responses.  I am going to see the Cardiologist on Tuesday and am really inclined to ask for Propranolol instead of Metoprolol.  When I had the undiagnosed 'episode' seven years ago, they gave me Propranolol for a short time and it worked really well without all this sluggishness and low heart rate that I am experiencing now.  I was trying to research and do some homework before I go, because I have heard from others that this particular Cardiology group really does not like to prescribe Propranolol, but I already know that it helped me in the past, so I am feeling a bit frustrated.  Any ideas on how to suggest it to the Cardiologist?  I definitely feel better with the Metoprolol than I did before, but I feel so out of it, too.  Thank you so much to all of you!  Dislike that any of us have to be here searching for answers, but glad to know there are others out there to lean on.  

Propranolol is usually the go to for POTS. Personally I did not tolerate it well. I needed the cardiac specific beta blocker. But my specialist tried to put me back on it. If your cardiologist won't put you on it talk to your PCP about the change. My PCP had me try the 24hr metoperlol vs the 12hr metoperlol. My PCP is amazing and doesn't mind working with me to better my health. 

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If you can access it there, Ivabradine may be a good option for reducing heart rate instead of a beta blocker. It doesn't reduce BP or cardiac output like beta blockers do. I haven't tried it as I tend to have a low resting HR but have heard good things from other patients who have tried it. I couldn't tolerate beta blockers at all, made me pass out more. 

Good luck with the cardiologist.

B x

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Thanks for the recommendations!  I will do some more research on Ivabradine, that sounds promising!  Interesting as well about the rebound tachycardia- I have noticed that when I forget to take it right away in the morning, my heart rate is much higher- makes sense.  

 

 

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