Atrial Fibrillation Support Group

Hello my name is Roxanne. I am 40 years old and for over a year now I have been having episodes and doctors have done several tests and came up with several ideas of what it could be but we still have not found a diagnosis. I've done tons of research and several possible causes list symptoms I have. My very first episode I was awaking from sleep and my tongue starts feeling itchy, heart is racing 120 or higher, I feel a pressure rising all the way up to my head like my head is going to pop off, my feet and hands turn really red and itchy and eventually my face gets red, then I get hives on my torso area. I've had several of these episodes that either happen when I'm waking or wake me very early in the morning starting with the itchy feeling of my tongue. Recently I've had a couple of episodes where this has happened out in public so it's not just from sleep now. My heart seems to be racing all the time. I check it at walmart and it's always over 100 but my blood pressure is normal. The two times I went to the emergency room my blood pressure was very high but on a day to day basis the pulse is high but bp normal. Can atrial fibrillation only be diagnosed when you're having an episode? I did the holter monitor and it did catch two times during sleep that my heart was racing 150 and higher and it didn't even wake me. I couldn't do the event monitor because I only have a cell phone and it has to be done over land line. I have been told it could be anxiety but I am never in a situation where I am anxious when this happens and why would I be having anxiety at 3 in the morning from a sound sleep? I tested positive for ana but rheumatologist said it was to low to be lupus. I am at my wits end because I want to find out what is causing this. No one understands how it feels when this happens. I am always tired no matter if I get 8 or 12 hours of sleep. When I have an episode I am constantly yawning and dead tired. I've had an ekg but are these only helpful during an episode? I did have blood work that was positive for blood clots. They rushed me to do a cat scan of my lungs and nothing. I am so depressed and scared becuase I don't know what this is and wondering if I don't get a diagnosis and treatment something may happen. Anyone else go through hoops and fire like this to find answers? I've been tested for thyroid, pheochromacytoma, lupus probably more but can't remember. Thanks so much for any advice or answers!

Hi glad to meet you. I am Vickie and yes it took along time to get my diagnosis. I wore and event moniter and that is how they found my AFib. My heart would race over 190 at times. You probably have a Dr. who is trying to figure out what is causing the AFib. You don't say if you have seen a cartioligist or just your regular Dr. If not You should find you one so he can make sure you are actually in AFib. The biggest complication of AFib is possible stroke. I do not want to alarm you, but it is something you need to know. They do Have meds for AFib and they usally put you on coumidan to prevent the possiblility of stroke. My Daughter has lupus and was hard to diagnos and her ANA was not high enough to consider it lupus. She was diagnosed through a kidney biopsy, as she was passing alot of protien through her urine. I wish you well and will be saying a prayer for you in hopes you find some answers. Pleas feel free to ask for guidence and reassurance anytime. Hugs Vickie

How long ago was it that you were told you couldn't do an event monitor because you only have a cell phone and no land line phone??

I ask because I'm currently wearing a 21 day event monitor that my cardiologist (in Michigan) ordered for me from eCardio in TX. The transmission are all done wirelessly by cell tower unless I happen to be in an area of poor cell reception. If that should be the case I can send a recording via any land line. It is just a matter of holding the monitor to the land line mouthpiece. The wireless transmissions just take care of themselves and I don't have to do anything.

I don't know for sure that eCardio doesn't insist on our having a landline or not but it is certainly worth talking to your doctor (who I HOPE is a cardiologist) about.

If you don't have a cardiologist yet or are not satisfied w/the one you have you might want to look for a cardiologist in a group practice (2 or more) that has an electrophysiologist cardiologist in the group. I'd prefer one of the cardiologists in the group who is NOT an EP in the hopes of avoiding needing to have an EP procedure - but his cardiologist fellow practioners would be more knowledgeable and up to date than some cardiologists are.

Good luck.