MeganMN Posted October 30, 2019 Report Share Posted October 30, 2019 Hello All, We spent a week at Mayo Clinic and I would love to say that we are closer to answers, but are probably not! I do, finally, have a future appointment for a Tilt Table Test, so that is kind of exciting. The Pulmonologist that I saw was a little bit dismayed that I had been so far down the POTS road without a formal evaluation by a Neurology Specialty. I continue to have irregular orthostatic tachycardia, it is unpredictable and erratic, which is better than constant! I am still being worked up for other things (mild Hyperparathyroid and Carcinoid Syndrome) and will see how it all plays in to the Tachycardia, if at all. Hang in there, all! Megan Quote Link to comment Share on other sites More sharing options...
Pistol Posted October 30, 2019 Report Share Posted October 30, 2019 You hang in there too, @MeganMN!!! I am sorry you still do not have enough answers but I am glad you are still doing better ( as per your last post ). Yes - POTS diagnosis seems to be a well kept secret in the medical community for many of us!!! Sending well-wishes your way!!!! Quote Link to comment Share on other sites More sharing options...
Sushi Posted October 31, 2019 Report Share Posted October 31, 2019 On 10/30/2019 at 12:29 PM, MeganMN said: I continue to have irregular orthostatic tachycardia, it is unpredictable and erratic, which is better than constant! I am still being worked up for other things (mild Hyperparathyroid and Carcinoid Syndrome) and will see how it all plays in to the Tachycardia, if at all. Hang in there, all! Have your EKGs been evaluated for arrhythmias like Afib or aflutter or ectopics? At least there are treatments for these. Best wishes! Quote Link to comment Share on other sites More sharing options...
MeganMN Posted January 1, 2020 Author Report Share Posted January 1, 2020 @Sushi thanks for the reply! I have at times Atrial Bigeminy and some Atrial tachycardia, all 'normal' according to docs. Just had my yearly Echo and will see Cardiology in a few weeks, but am expecting more of the same- nothing! Finally got a tilt table scheduled at Mayo in the Spring- will be curious to see how that goes. Quote Link to comment Share on other sites More sharing options...
Sushi Posted January 1, 2020 Report Share Posted January 1, 2020 1 hour ago, MeganMN said: I have at times Atrial Bigeminy and some Atrial tachycardia, all 'normal' according to docs. Not "normal!" But usually not dangerous either--just makes life difficult! These can be treated--ask to see an electrophysiologist. Since "rhythm" is their speciality, they tend to respect patterns like that more than general cardiologists. Quote Link to comment Share on other sites More sharing options...
MeganMN Posted January 1, 2020 Author Report Share Posted January 1, 2020 @Sushi thanks! The Electrophysiologist that I saw last year was not impressed or impressive. He wanted me to try Corlanor if the Propranolol did not help. The Propranolol made it MUCH worse at a low dose, and at high dose made me Brady/Low BP. The Corlanor is expensive! Ick. The Cardiologist that I am seeing in a couple of weeks is supposed to be really, really good, so we will see! Thanks so much for the ideas, though! Information is a good thing! Megan Quote Link to comment Share on other sites More sharing options...
Sushi Posted January 1, 2020 Report Share Posted January 1, 2020 3 hours ago, MeganMN said: He wanted me to try Corlanor Did you check the price and insurance coverage for the generic of Corlanor, Ivabradine? 3 hours ago, MeganMN said: The Propranolol made it MUCH worse at a low dose, and at high dose made me Brady/Low BP. There are a lot of different beta blockers--each with specific actions, so when you see the new cardiologist, maybe you could discuss that. I had pharmacogenetic testing (ordered by my EP) and it ruled out one of the most prescribed beta blockers--so glad that I had that test or I could have been in trouble. Quote Link to comment Share on other sites More sharing options...
MeganMN Posted January 2, 2020 Author Report Share Posted January 2, 2020 @Sushi- Oh wow! Thanks so much for sharing! I will definitely look into that more!!! Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 2, 2020 Report Share Posted January 2, 2020 3 hours ago, Sushi said: I had pharmacogenetic testing (ordered by my EP) and it ruled out one of the most prescribed beta blockers--so glad that I had that test or I could have been in trouble. @Sushi - I did not know there was such a thing! I tried so many meds over so many years - I wish I had known that a test like that exists! Quote Link to comment Share on other sites More sharing options...
Sushi Posted January 2, 2020 Report Share Posted January 2, 2020 1 hour ago, Pistol said: @Sushi - I did not know there was such a thing! I tried so many meds over so many years - I wish I had known that a test like that exists! @Pistol Yes, they took a cheek swab and tested my genetic pathways and correlated that with common pharmaceuticals. Then they sent me a document detailing how I would respond to different medications. It was interesting as some I would need about 4 times a normal dose, some I would need a half or quarter the normal dose and some I should never take at all. They also sent a wallet card listing the drugs I should never be given. These were entered into my medical records so that if I get treatment at my local hospital or with my EP or PCP, they will not give me those drugs. Quote Link to comment Share on other sites More sharing options...
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