MeganMN Posted December 28, 2018 Report Share Posted December 28, 2018 Hello again! Was curious what type of breakthrough symptoms you all have? I have felt pretty good on the Propranolol, but oddly, still find myself feeling off-balance/kind of dizzy, sometimes shaky, sometimes nauseated, sometimes super sweaty, like the response to the fight-or-flight without the fast heart rate. I guess that my body is still struggling with the adrenaline but the Propranolol is keeping my heart rate down? What are your experiences with this? Quote Link to comment Share on other sites More sharing options...
potsiebarbie Posted December 29, 2018 Report Share Posted December 29, 2018 I was prescribed florinef, but haven't started it yet. However, when my BP goes from low to normal, and my heartrate goes from high to normal, I still feel misfit cognitively. Derealization/depersonalization, bad memory, slow thinking, etc... Easily my most bothersome symptom. It's constant too. Has been for about eight months when my pots seemed to make it's debut. So probably not quite the answer you're looking for, but just thought I'd share. Quote Link to comment Share on other sites More sharing options...
Hutch Posted December 29, 2018 Report Share Posted December 29, 2018 46 minutes ago, potsiebarbie said: I was prescribed florinef, but haven't started it yet. However, when my BP goes from low to normal, and my heartrate goes from high to normal, I still feel misfit cognitively. Derealization/depersonalization, bad memory, slow thinking, etc... Easily my most bothersome symptom. It's constant too. Has been for about eight months when my pots seemed to make it's debut. So probably not quite the answer you're looking for, but just thought I'd share. I’m same as you, even when heart rate and bp is normal still all the same symptoms. Hope Florinef helps you. Gave me the worse head aches I’ve ever had. It help with heart rate some. But nothing else. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted December 29, 2018 Report Share Posted December 29, 2018 I take metoprolol to help my heart rate. I still get breakthrough tachycardia with it occasionally but I am learning triggers and pacing my self. I still get my other symptoms but my midodrine helps with those. It is like you described, even though the heart rate is stable the symptoms still remain sometimes. It is not as severe with my Beta Blocker but not gone. There doesn't seem to be a magic cure all pill, but over time and a combination of medications you can feel better. It is just finding it. And everyone is different. Quote Link to comment Share on other sites More sharing options...
MeganMN Posted December 29, 2018 Author Report Share Posted December 29, 2018 @potsiebarbie that is exactly what I was looking for! has anyone actually heard a good rationale for a doctor about what is going on physiologically to cause symptoms still? I am having such a tough time wrapping my mind around this. As a nurse and someone super scientific, I just do not get how there can be so much vagueness with this diagnosis. What causes the symptoms after the Beta and Alpha blockade with the meds? Quote Link to comment Share on other sites More sharing options...
Pistol Posted December 30, 2018 Report Share Posted December 30, 2018 @potsiebarbie and @MeganMN - as the name says, POTS is a SYNDROME, that means it is a combination of symptoms. Tachycardia is only one of them. All the other symptoms are still there even if the tachycardia improves. That is why many docs do not even want to touch POTS - it is too vague and frustrating. In my case it took years and many meds as well as lifestyle adjustments to come to a place of balance, and even that is a fragile one. Dysautonomia affects the whole body AND mind - and all of the symptoms paly together. So - yes, unfortunately we can not just treat the tachycardia ( wouldn't that be nice, though? ). Every symptom has it's cause and therefore a treatment, we just have to find it. I know - that sounds discouraging but it is not, actually. It gave me courage to try different things until we found the right combo. Hang in there!!!! Quote Link to comment Share on other sites More sharing options...
MeganMN Posted December 31, 2018 Author Report Share Posted December 31, 2018 Thanks guys! A win today, yesterday was awful and today I made it outside with the hubby and kids to have a fire, got dogs, and tea by the fire in the new snow! Felt sooo tired with chest pain the whole time walking, but had fun anyway! Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted December 31, 2018 Report Share Posted December 31, 2018 14 hours ago, MeganMN said: Thanks guys! A win today, yesterday was awful and today I made it outside with the hubby and kids to have a fire, got dogs, and tea by the fire in the new snow! Felt sooo tired with chest pain the whole time walking, but had fun anyway! Enjoy those moments. Use them to help motivate you toward getting through the bad times. I think I appreciate those fun moments all the more because I have to work harder for them. Quote Link to comment Share on other sites More sharing options...
Melissasul Posted January 1, 2019 Report Share Posted January 1, 2019 Hi there. I’m Melissa and this is the first time I have posted on this forum. I have POTS in addition to 3 other auto immune diseases. 😞 I’m 42 and am finding that my POTS symptoms get incredibly bad during my cycle. Can’t even sit up without having a syncopal episode and constantly feel lightheaded and weak. I always feel fatigued and rest doesn’t make any difference. Can you relate to any of this? Thanks. Quote Link to comment Share on other sites More sharing options...
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