A Fib, POTS, and seizures

Hi, I've posted in here before with cardiac symptoms that were in the process of being dx in a really bad medical county for those with state insurance. I finally was dx in Omaha while visiting my dad, as having POTS (postural orthostatic tachycardia syndrome) and Atrial Fibrillation, both of which I knew from having a positive tilt table test done here and a holter showing tachy of 199 and total afib flutter, but were not followed up on until visiting omaha. He put me on topral xl 50 mg, and told me to follow up with a cardiologist here in northern california. the first cardio I saw would not treat me as his patient because I did not have a general practitioner, due to the fact that I also have fibromyalgia and I hadn't been in to the doc who will treat that yet as he is in another city. So because he wouldn't see me, he would not refill the topral that I ran out of. The topral btw worked ok, didn't completely get rid of the episodes but seemed to help them a bit. I ended up in ER after going into AFib and then into a grand-mal seizure which has never happened before and thankfully a doctor was around to witness it. I hjave since had six more seizures and have had syncopy and shallow respiration and been life flighted out to the hospital. they got me into a cardio that will see me becuase I finally got an appointment with the gp, and have a holter moniter on as we speak and have an eeg scheduled for next week, and a cardiologist consult and follow up on the 24th, and a neurologist appointment being set up; they have speculated that the afib untreated currently and although treated before but not controlled has worn down my body and heart along with the other medical issues and has thrown me into seizures. my question and reason for posting is: because I have had positive tests blown off and not followed thorugh with and do not totally understand what is going on with my body, but am finally being agressivley treated, how do I get all the information I need from my cardio? I never seem to get all my questions answered and get flustered talking to specialists. how do you guys approach getting understandable answers from your cardios? I just don't want to waste any more of my time and want to get this resolved and understand this. I am 19 years old and know little aboutmy conditions except what web md says, and I'm spinning.

Thanks, amy

Hi Amy,

Goodness!  That's a lot to go through all at once!!  I have POTS myself along with supraventricular tachycardia (though that seems to be more under control after three ablations.)  I take Toprol xl too and feel a lot better with it.  Teri's questions to ask are good ones.  I can't think of any myself right now...it's just after 5am and my brain is still asleep. 

My suggestion for you is to buy a notebook.  I have a five subject one divided up for my regular doc, my cardiologist, pulmonologist, hospital visits, and tests.  Each time I see any of my docs, I write the date, time, and doc at the top of the page.  Underneath, I write why I'm going to see him...new symptoms, follow-up, test results, etc.  Then I write all my questions skipping lines so I can write the answers down.  I also let my doc know that I have questions to ask him before my appt is over.  Also, when I leave (usually before I pull out of the parking lot) I write down what happened at the visit.  I make a list of any new meds he gave me and reactions...also any tests he wants and why.  Sometimes I do all that while he's telling it to me in his office and then I read it back to him to make sure I have it right.

I also carry a folder with me to put any paperwork I get from my docs.  They will often give me information sheets and pamplets on my conditions.

Oh wait...I just thought of a question...it's about POTS.  Has anyone told you to wear compression stockings?  They keep the blood from pooling in your legs...makes standing up a lot easier!!!  They're not the most glamourous things...I'm 27 and wearing tight white hose is really not my thing...but they do help! 

I hope this helps.  Keep us informed!

 Lil

Hi Amy

I'm sorry to hear you're having such a terrible time at the moment.

I just wondered if you have anyone you could take with you when you go for consultations? I always go with someone else, otherwise I tend to forget things as soon as I leave the room. But the advice from the other ladies here looks excellent, very practical.

Hope you get some joy soon.