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Just diagnosed--can't wrap my head around it
I am having a hard time too. I went to bed last Friday, 3/8, and couldn't go to sleep because my heart was pounding so hard it felt like it was a drum beating on my mattress. I have never had that happen before. I had had flutters for a couple weeks off & on after my company left, but didn't think about it. This time I couldn't ignore it. My heart was beating so hard I thought it would stop beating altogether just from wearing itself out, so I called the police dept and asked them to call RMSA. They got here within 15 minutes, lights flashing, waking up all the neighbors, hooked me up to their portable EKG, got alarmed and loaded me into the ambulance. I was still in my PJs and robe with slippers. We left in such a hurry that the paramedic couldn't even lock my door right. I went into a WOP mode (whatever that is) on the way to the hospital. I was shaking uncontrollably and shivering like I was in a snowstorm even though the ambulance was warm. So got to the hospital and they gave me baby aspirin and Pepsid, then some other drug, and finally after about two hours my heart went back into rhythm and I could go home. I can't figure out what caused it. I have low blood pressure and am in excellent health, or thought I was. I'm scared, terrified, and the more I read the more scared I get. I read that people with afib have shorter life spans. I'm on Xarelto now, and was told I would probably be on it for life, which means if I'm in an accident I could bleed to death before I could get help. I have no one to talk to. No one in my family has any heart problems even though my dad did. The doc still hasn't scheduled me in. I wish I had a friend to talk to about this. I have no idea now what my future will be like. Can anyone shed some light on this for me?
ijackson57, March 12, 2019 9:50pm EST
Hi Sunbirds...I'm sorry you had such a lousy "introduction" to A-Fib. It can be very frightening when you first encounter it. It can also be depressing when you don't know what it means for your future. Rest assured that there are many people in this forum who've felt all the same things, and have come through it well. You've already started on Xarelto and that is the first thing the docs want to get in place, to prevent a stroke.
You should also know that a lot of people live long lives with this condition, so it doesn't have to be the beginning of the end. There are ways of treating it with medication and with medical procedures, so there is also the hope that you can get rid of the symptoms for awhile, maybe even permanently, at some point. And many people figure out ways to resume their activities, so it is not necessarily the end of your cyling days either! You might have to adjust some things, of course.
I am a wine drinker like you and continue to enjoy it within reason. Some people find that alcohol triggers a-fib episodes, but that never happened for me. In fact, nothing seemed to be a trigger for me, it just showed up whenever. Once you've read some of the other posts on this forum, you'll see that different people have different experiences with this condition but most learn to live with it and do very well.
It would be good for you to find someone to talk to in person, but in the meantime, you can "talk" here. And, as Spencer says, staying calm is important, so make sure you do some things that relax you.
Take care, Irene
Heartfe6878, March 12, 2019 9:59pm EST
One more idea...Be sure to ask for copies of the tests and records as you go along. This will help you with the consults.....Keeping a notebook helps....
Thumper2, March 13, 2019 9:12am EST
sunbirds, you've gotten a lot of good advice here already. Let me just emphasize getting a test for sleep apnea (and I hope your doctor will give you a decent description of your results). I was on a CPAP for almost 3 years, then noticed that the hourly "events" during the night had gone way down, to about 2 or fewer. A special type of oximeter showed that, overnight, without my CPAP, my blood oxygen level did not go down. So, I stopped using my CPAP. This seems to be OK for me, but one night recently, I woke up and could not get back to sleep because my heart was pounding noisily, and my blood pressure was up somewhat. This hasn't happened again, but I went to see a PA about it; he suggested having another (my 4th) sleep study to see if my apnea is acting up. I may do this, but will try to have it done somewhere/somehow where I'll understand the results. Otherwise, it seems a huge waste of time. But I still urge you -- get a sleep test!
sunbirds, March 13, 2019 11:13am EST
Thanks for advice. Question: I've been feeling tired and not feeling good for a while, most of the winter. Could that be because of my afib? I have thought the decline in my energy level was because I hardly ever sleep through the night (this has been going on for years) and that I didn't feel well because I get sinus infections in the winter. Now I'm thinking it might be all about my afib. I used to have so much energy and now am tired even when I get up.
Also, is it safe to drive long distances alone when you have afib? I had a trip planned next month. I'd be on the road for about eight hours straight, and some of the trip is on a highway that is narrow, 2-lane, and gets very little traffic. I was nervous about driving on it before I had this episode and got my diagnosis.
Spencer, March 13, 2019 6:04pm EST
Sunbirds - I was dizzy when I started the cardiac drugs and well after I stopped the medications as they worked their way out of my system. Long Trip... let your body tell you how far you can push it. You will be sitting in an air condition space just like you would be at home. Ask your PM/ GPM if you can before the trip. Being tired this was the same for me. I had a long term sleep problem that limited my sleep to one to two hours a night... for the long term. You have a lot to ponder, and I would expect some sleepless night. If the blues last too long it might be time to talk with someone. I reached for help shortly after my first ablation that thew me into far more AFib than before. Also, my timeline from diagnosis and first operation was very very short.
sunbirds, March 13, 2019 7:16pm EST
You clearly have it much worse than me. I was released after just a few hours in the ER because my heart went back to normal. It seems my episodes are only at night, when I'm tired. It astounds me that you could go so long with so little sleep. No wonder you have afib. I have a brother I worry about because he gets very little sleep some nights. We keep telling him he's setting himself up for heart problems but he won't listen. The heart can only take so much abuse.
My trip is planned more than a month from now, so I have plenty of time to clear it with the doctors. I think I'll be fine, but since this is new territory for me, I can't be sure. It would really suck if I was two hours outside any town and I had a severe episode--with no cell phone service to boot.
I'm actually feeling a bit better today. Just climbed a hill to see if anything would happen but only got a little winded and my heart did not go into afib. Baby steps.
Have a good evening. One thing I'm trying to do, as you probably are also, is appreciate every day for what it is. Life seems so short lately, and getting shorter all the time!!!!!
Spencer, March 13, 2019 7:28pm EST
What?!? You can't post from the ER? You need to think hardcore.
Great that you are doing well... so get a good nights sleep, and don't exert yourself too much. Listen to docs when you go in to see them. Have questions ready and take a family member to help remember everything. I tried to take my dog one time, but I was rejected due to obvious anti-dog bias in the clinic. Still looking for a civil rights lawyer to take the case.
I'm glad to hear you are doing well and coming up from the blues.
In the Sunlight
sunbirds, March 13, 2019 10:35pm EST
That's clearly a discrimination case. I like most dogs better than I like most people.
Realized earlier that I've had no heart flutters all day. I've been working hard to keep hydrated and not get upset about anything. Plus, something interesting--I laid down for a nap late this afternoon and my kitty camped out on my chest. I think her purring helped my heart!! Later I noticed my heart wasn't beating as hard and was very regular. Pretty cool if she was the reason. Probably not, but I like to think she was.
Spencer, March 14, 2019 7:13am EST
That is great! I hope this keeps up and the problems were temporary. I also enjoy the presence of dogs than just about anyone else, save the spousal unit. My dog helped me get through my AFib by walking for a couple of hours each night. Best therapist ever.
One thing to note - you are different. Anyone that receives a diagnosis of a heart problem that is not cureable, you start to fear every heartbeat beat. You listen and hope it is in rhythm and then wait for the next. AFib changed my life entirely.
Congrats on the NSR! Here's to many millions more.
In the Sunlight
sunbirds, March 14, 2019 11:37am EST
Spencer, I have not felt good since this happened last Friday night. I feel slightly sick all the time pretty much. Am I ever going to feel good again? I am happy that I'm not having any heart flutters and slept OK last night with no pounding heart to keep me awake, but it would be nice to feel healthy again. Am I being too impatient?