Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

POTS in South Bend

Written by Katie. Posted in POTS Appointments

We spent so much time in Dr. Lavallee’s office, so we had to race to my third appointment a couple blocks over with Dr. Halleran, a cardio electrophysiologist.  Dr. Lavallee referred me to him for POTS. 

My appointment started with an Echo (which must have been fine because they didn’t say anything about it).

Dr. Halleran came in and listened to my history and my symptoms.  He explained a lot about POTS and that he actually does not like the name POTS because this disorder has to do with a lot more than just tachycardia.  He also explained that the Beta Blocker I am on would not have been his first line of treatment.  However, he agreed that since it does seem to be helping me some, it is best for me to continue taking it.  He reiterated the importance of eating a lot of salt and drinking a lot of liquids.  He explained that drinking liquids is not enough, and that the salt/water combination is KEY to helping control symptoms.  

With that, Dr. Halleran explained that people with POTS, have a hard time retaining the salt/water volume and that is why he likes to put his POTS patients on a med called, Florinef.  He prescribed me this medication to help increase my blood volume, and to hopefully also help with my blood vessel constriction.  He wants me to watch for three side effects: high blood pressure, headaches, and low potassium.  He wrote me a lab slip to have my potassium levels tested after a week of taking this medication, to make sure the Florinef is not depleting my potassium levels.

Honestly, I was not totally thrilled with having to start another medication, but if it helps and gives me more function, than it will be definitely worth it.  I plan to start Florinef today, and am praying for no complications or side effects. 

Dr. Halleran reiterated that there is no cure, but the good news is that the symptoms can be treated. He explained that there is still a lot of research to be done on this disorder; and all types of dysautonomia for that matter.  So again, (I hear this a lot these days) treatment is trial and error.  He explained that with POTS, even if I find a treatment that helps, there will still be good days and bad days.  The goal is to have the good days outweigh the bad days. 

Dr. Halleran seems to believe that I will always live with POTS.  I was told at other appts that I may outgrow it so who knows.  Hopefully as modern medicine advances, more and more will be known, which will therefore offer possibly a cure.  One can hope!

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