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Does this sound like POTS? Please help!


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I stumbled upon this forum and think I may have found my people! I know many can relate to the frustrations of many doctors visits with no answers, and that’s where I’m at. Something has been going on for a year. I’ve been to the ER twice with sinus tachycardia (120-130) with very little exertion and subsequent shortness of breath. I’m usually in good shape, but on a bad day, going from seated to standing at church makes my heart go from 80’s to 110.  Climbing 8 stairs makes my heart do the same most any day. These episodes used to last a week or so and then I’d have some better days. Now they’re everyday. I gave up coffee for the tachycardia but broke down and had some yesterday and actually felt better. I also will sometimes just be laying in bed in the mornings and feel like adrenaline is coursing through my body. Like my alarm will go off and shoot my heart rate to 100. My sleeping heart rate is consistently in the 60’s. I wear an Apple Watch to watch the crazy highs and lows of my days. All my blood work, echo, stress test, etc has been ok. I’m in the Kansas City area and don’t think there are any POTS specialist in the area so I’m not sure what a good next step would be. I feel like I’m used to the crazy heartbeat, but the shortness of breath is what bothers me the most. I’ve had a chest CT and been to a pulmonologist who just said he doesn’t think this has to do with my lungs. My BP and heart rate are always in an inverse relationship with each other. Higher heart rates with more normal BP’s and vice versa. Cardio just gave me metoprolol but I’m afraid to start it. Wondering if I should have a diagnosis before treating?! Thanks for following this far! Any suggestions, advice? Does this even sound like POTS? 

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Sounds like some very uncomfortable symptoms which you need to discuss at length with a physician as the forum cannot diagnose you. There are multiple forms of dysautonomia--they are not all POTS.  You should call your cardiologist's office and tell them that you are not taking the metroprolol because of your concerns. 

 

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I would try the metoprolol. It was prescribed to help. Plus it is probably the 12 hour one so it will leave your system fairly quickly if you react badly. Talk to your cardiologist about getting a Tilt Table Test. That will rule out or confirm POTS or other autonomic dysfunctions. If your tilt table comes back fine next step would be back to your PCP to rule out some things using blood work. Have they checked your thyroid?

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I second @StayAtHomeMom - A TTT  is probably the best to determine whether your symptoms are caused by dysautonomia. I myself would take the metoprolol since it does treat tachycardia. But I understand why you are concerned - I also feel very scared to start new meds. I took metoprolol in the beginning and tolerated it just fine, it just was not strong enough so we switched. It may just be your solution - many people respond well to it. 

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I was told recently that metoprolol is not the idea beta blocker for POTS.  I was in hospital and given that.  My specialist wanted me to switch back to pindolol.  Anyway, I felt the metoprolol was helpful in regulating my hr and I did not have any problems with it during the time I took it.

I agree with what others have said.  If you are not going to take it you should consider letting your doctor know.

If you were to have a TTT typically they would probably want you off the beta blocker for the test.

Please keep in mind that we can share our experiences on the forum but cannot diagnose or give medical advice (eg what med to take, whether to take a med etc).

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Thank you everyone. He prescribed the metoprolol ER and I still haven’t started it. Strangely today my heart rate was totally normal all day...it’s almost like it gets tired and gives me a few normal days. I totally understand nobody can give me a diagnosis. I just don’t know if I’m in the right place, but it seems like it. I’m afraid of scheduling a tilt table because I’ll probably not have bad symptoms that day! My biggest issue now is being lightheaded....but my vitals were ok today. Like 120/80 and 75 pulse. Not sure why I’d still have symptoms with the normal vitals. Ugh. 

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23 hours ago, Pharmgirl said:

Thank you everyone. He prescribed the metoprolol ER and I still haven’t started it. Strangely today my heart rate was totally normal all day...it’s almost like it gets tired and gives me a few normal days. I totally understand nobody can give me a diagnosis. I just don’t know if I’m in the right place, but it seems like it. I’m afraid of scheduling a tilt table because I’ll probably not have bad symptoms that day! My biggest issue now is being lightheaded....but my vitals were ok today. Like 120/80 and 75 pulse. Not sure why I’d still have symptoms with the normal vitals. Ugh. 

I am currently trying the ER. I am not thrilled with it but it is only because I have having trouble sleeping (that is why I was only taking the 12 hour one in the morning but not evening) I think personally it may be time to try something else for me.

I felt like my second TTT may not show my POTS because I was feeling better. But according to my doctor and the technician who did it they said that it showed POTS. My blood pressure dropped a bit and they made me wait to get off of it but it definitely wasn't as bad as my first one. I think as long as a properly trained professional are reading the results it will be fine. 

Be careful with lightheadedness, that can be dangerous if you are not careful. Call your doctor or pharmacist and share your concerns. They may help alleviate some of your fears. Right now I am feeling pretty crummy but my heart rate is only 80 sitting. I take the metoperlol to help my tachycardia so that may be part of it but I frequently have symptoms with my heart rate and blood pressure being normal. It is just one of those things. 

Hope you keep having those good days. 

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@StayAtHomeMom - I have experienced that my meds work fine for a while and then either stop working or my symptoms return. The metoprolol was the first BB I tried but it did not help for palpitations and tachycardia.  One very ignorant EP - he did my second TTT - told me that all my problems come from the metoprolol and that I will be fine if I just stop it - that I did not need it. He claimed that my TTT was normal but later the autonomic specialist said it clearly showed POTS. so I stopped the Toprol for a week - just to prove a point - and when I returned to my own cardiologist I was in such a bad state that he started me on Bystolic and midodrine. Both of those were ineffective ( midodrine does not work for hyperadrenergic POTS ). So then we started Carvelidol ( BB ) and that did the trick. Although I had to slowly go up from 3.125 mg to 25 mg - I immediately felt relief of heart related symptoms. It affects both beta - and alpha receptors, that must be the difference. I sear by it and my cardiologist now uses that as firstline BB for many POTS patients. --- But - of course - this is only my scenario, everyone responds differently to BB.  --- @Pharmgirl - I wish you good luck and don't be afraid of the TTT - most people with POTS are symptomatic with the TTT even if you felt fine walking in. Be brave!

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3 hours ago, Pistol said:

- I have experienced that my meds work fine for a while and then either stop working or my symptoms return. The metoprolol was the first BB I tried but it did not help for palpitations and tachycardia.  One very ignorant EP - he did my second TTT - told me that all my problems come from the metoprolol and that I will be fine if I just stop it - that I did not need it. He claimed that my TTT was normal but later the autonomic specialist said it clearly showed POTS. so I stopped the Toprol for a week - just to prove a point - and when I returned to my own cardiologist I was in such a bad state that he started me on Bystolic and midodrine. Both of those were ineffective ( midodrine does not work for hyperadrenergic POTS ). So then we started Carvelidol ( BB ) and that did the trick. Although I had to slowly go up from 3.125 mg to 25 mg - I immediately felt relief of heart related symptoms. It affects both beta - and alpha receptors, that must be the difference. I sear by it and my cardiologist now uses that as firstline BB for many POTS patients. --- But - of course - this is only my scenario, everyone responds differently to BB

My first was propranolol. I have breathing trouble as my main and consistent symptom and it made it worse so my cardiologist tried a calcium channel blocker. It helped but not enough. My pulmonologist recommended the metoprolol because of the type of beta blocker it is, it would not effect my breathing. That was about a year ago. It started messing with my sleep about 3 or 4 months ago. It helps my tachycardia and my palpitations but my sleeping just sucks. I think I have just normal POTS and that may be why to midodrine helps me but it helps me have energy and feel more "normal". I think I am going to have to make an appointment with my specialist again to mess with my meds. My cardiologist moved and my new one is not as good. She just pushed me off to my specialist to be my main doctor to take care of me even though he is 3 hours away. My life is just so busy right now that I don't have the time and energy to go see him. 

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Dear @StayAtHomeMom - I am sorry you lost your cardiologist - I know how concerning it is to have to see a doc who does not know you and your condition. But I wanted to let you know that there is no such thing as "regular" or "normal" POTS. There are some people who are able to be treated for their symptoms and others are not but POTS is POTS. And this is a constantly changing condition so what you are experiencing may well be just one of those times when our bodies change and with that so does POTS?  

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10 hours ago, Pistol said:

Dear @StayAtHomeMom - I am sorry you lost your cardiologist - I know how concerning it is to have to see a doc who does not know you and your condition. But I wanted to let you know that there is no such thing as "regular" or "normal" POTS. There are some people who are able to be treated for their symptoms and others are not but POTS is POTS. And this is a constantly changing condition so what you are experiencing may well be just one of those times when our bodies change and with that so does POTS?  

I meant just non hyperPOTS. I have yet to find my underlying cause. So in my mind it is just "normal" POTS because there is nothing attached to the acronym. 

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