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. 

After seeing Dr. Cantieri, we headed to South Bend.


My next appointment was with Dr. Lavallee, who is a sports medicine doctor, who also specializes in Ehlers Danlos.  He actually has Ehlers Danlos; the classical type, meaning it affects his skin and he also has the extreme joint hypermobility.  I had no idea what to expect from this appointment, except I was pretty excited to talk to a doctor who actually lives with what I am living with.

1.  Medical Stuff:

• 1 PT session this week…my other appts were cancelled so I hit my exercises hard at home the best I could.
• Got my new compression stockings.  They are thick like a sweater! Takes “compression” to a whole new level. 
• Saw Dr. Cantieri for prolotherapy, Dr. Lavallee for EDS, and Dr. Halleran for POTS in Mishawaka/South Bend.
• Was prescribed topical Testosterone and a topical pain med that I had to get made at a compound pharmacy.
• Was prescribed Florinef for POTS.

1.  I started my Beta Blocker, Propranolol and started wearing compression stockings.  I was terrified of swallowing my first pill because I’ve had a history of being allergic to medications, but thankfully nothing crazy happened.  My compression stockings are definitely going to take some time to get used to, and I would appreciate any tips on how to get them on in less than 20 minutes.

After 11 long months, I have my first answer.  I went to Cleveland yesterday to get the results from my autonomic nervous system testing.  I went into the appointment with low expectations, most of all to protect myself.  I had been through so many other appointments to only find myself frustrated and disappointed when I was told that the test results did not show anything.  The doctors would tell me to celebrate the negative results but honestly this was hard when I still knew something was really wrong, and I didn’t know what it was.  I would leave many specialist’s office feeling like a crazy person when I was told my tests were normal, or that they came back “beautiful,” while I was still having crazy symptoms that made me sick.