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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?
Spencer, March 12, 2019 5:56pm EST
Sunbirds - You will find many friends on this website. We can help you understand this disease and how to think about it. I'm Spencer, and I am the crazy one here, so take that into account on any AFib advice or wine selection. I have had a similar experience, new year's eve and after the party, my heart started to pound. I knew about my AFib for about three months prior, and had many episodes but not like this when the ambulance arrived with full lights going and accompanied by his friends - two fire trucks, and two police cars. All lighting up the night, and awakening the neighbors. When I was hooked to the EKG, it read 250 and AFib, SVT. I looked at my heart rate watch, and it stopped reading and just said, "why are you not dead, and give me to someone nice." Wound up in the ER and ICU (cardiacs go there because of a short staff) for four days. I also left in sweats and topless as they cut the shirt off. ICU during New Year's holiday is not that festive nor comfortable.
So what next...Get to an EP an electrophysiologist, basically an electrician for the heart as your problem (as described) is electrical. Good news AFib is generally not deadly, but you need to take the meds they gave you. You risk of stroke is much higher now, and the drugs will reduce that risk. Why? This disease is not fully understood. For some, it is genetics, other it is long term intense endurance athletes. Other are just sort of random. So I'd probably say you won the great AFib lottery. There are many different procedures that can help control and even put the AFib into remission. I am in remission now after lots of work done on me and have not had an AFib episode since Apr. I am very grateful for the docs that worked on me. Many of the people on this board have gone on to be very productive and highly active. Take solace in that. So... this is something that many have gone through before you and those ahead of you will help you. This is also an excellent website to complain and honestly bitch. I learned far more here from my docs.
When is your appoint with the EP?
Hope all this helps.
In the Sunlight
sunbirds, March 12, 2019 6:37pm EST
Spencer, part of what is driving me crazy is that my doctor is not calling me to set up an appointment. I called her office first thing Monday morning. Last night same thing happened all over again, but this time I took a cab (hospital is eight minutes away from my house) and by the time the ER doc got around to me an hour later, my heart rate had returned to normal. Thanks for advice on this. I'm trying to figure out now why this popped up now. I went through a heart stress test about four years ago and it showed my heart to be in excellent shape. I am a wine drinker and have had a glass or two of wine with dinner for years--decades, with occasional breaks such as because of work demands etc. Could that be why? Also, I got intense smoke inhalation about four years ago and have had somewhat of a compromised lung function since (combined with acid reflux), so that could be why also. I am feeling a little heartbroken (no pun intended). I love to bike and hope I still can. I like to hike as well.
Thanks for responding. I am feeling so lost right now.
Spencer, March 12, 2019 7:11pm EST
Sunbird - So go done tomorrow and sit on her desk till she gets you an Appt. I assume this is GP or PCM. Will your insurance allows you to go direct to the specialist? But also, this is not life-threatening; you can convert naturally. The docs would see it like this and be in no GD hurry to get you in to see an EP. Keep a log if you can. I can go with my watch (remember that's the one that tried betray me for someone else).
I'd sit back and have a glass of good wine, get some popcorn and settle in for a good movie. Remaining calm will help the situation. That is hard right now. I know. I fretted over my heart for a long time. It is tough to do this. So a little bit of liquid courage will help.
Here's a pix of me working the ICU while under AFib. I have been hospitalized a total of 21 days due to AFib. Got to know the nurses well...
So my recommendation - since you converted and the hospital guys didn't go nuts you should be OK till the EP and see you. Stay calm. Goto the ER if you get to feeling bad. We all end up knowing what our AFib feels like. For me, I would pace in a left-circle. I don't understand this.
Again, I hope this help. Also, look on the website and see if you can get some info. Look back at my postings and see how hard I took this.
In the Sunlight
sunbirds, March 12, 2019 7:53pm EST
Spencer, no my insurance will not allow me to go directly to a specialist. I actually think the holdup might be that the ER has not got the results to her yet. Her office mgr said they'd have to get those results first and then the doc would review them. I have a good doctor. She will probably consult with one of the specialists she knows before she calls me in to tell me the next step, but the waiting is hard.
I'll check out your posts. I've never been very good at facing my mortality. I think a lot of people are like this. I had company recently and we actually talked all one evening about death. I am more afraid of being disabled than dying. I worked as a caregiver once and being disabled was the worst thing for most of my clients.
I'm surprised you said "have a glass of wine." I was told not to drink wine or anything with caffeine in it. No chocolate either. All that was pretty bad news too.
Heartfe6878, March 12, 2019 8:21pm EST
I agree with Spencer...Get a appointment with a Electrophysiolgist.....Look up Heart Rhythm Society and see who is on their site who is near your location....There are many triggers for afib...A full work up is in order including a sleep study, thyroid function electroyltes etc. etc....Just get a appointment with someone as soon as you can or atleast ask for a call back from the nurse to tell you what to do....Not sure why they have not put you on some kind of medicineto attempt to control or lessen the episodes. Ask them why you are not being treated this way?
The wine can be a trigger for some people and also coffee...try not using this and see if it helps...Stimulants and depressive things can aggrevate this for some people...Sleep apnea can also complicate things....Order a oxometer from Amazon and see what your heart rate is when you feel this way....Alivecor has a app for the phone that will tell you whether you are having afib or not...good to get one of these....
There are triggesr that activate the problem in some people... Some others not....
The squeaky wheel gets the grease so to speak....Compain and ask for help ....Change doctors if need be...Just keep asking your local people for help too
Spencer, March 12, 2019 8:22pm EST
Snowbirds - of course, it was just a suggestion but WTF you are gonna die of something. I'd rather have wine in the belly than not.
We will all have to deal with our end and knowing that it comes for us all is a bit of a comfort. Well... except for this guy long ago. I was in the military, and I have faced death a couple of times and dealt with the deaths of others. It gives you a more sanguine view in the end.
It sounds like your docs have it in hand and will be able to get with you and find a pathway to well again. Note, that definition may be different than you know now. I know that mine is and I try each day to get back what was taken from me.
Note that I am the end of the AFib experience. So you need to temper your reading with this lens.
So continue to rest and be calm. Your docs will help you along with those on this site.
In the Sunrise
sunbirds, March 12, 2019 8:33pm EST
Heartfelt, thanks for the suggestions. I didn't know about any of those devices to help me track my episodes. It's weird. I have had none today that I could notice. It seems they come on at night, when I'm tired. Also, talking to a person who is agitated gets me uptight, and then I feel my heart flutter and it feels like it skips beats, so I need to avoid people who stress me out. I'm retired, thank God. I could not handle any of my former jobs with this. They were all too stressful.
My blood was drawn in the ER (twice--once for each hospital that I went to), and the ER doc last night told me my metabolics were stellar--which deepens the mystery. A friend told me she takes magnesium because at one time her heart was skipping beats. I should ask the doc about that also. I've been a health nut for most of my adult life, so not getting enough veggies or eating too much red meat never has been an issue.
So much to learn and so much to figure out. I want to live 20 more years. Had a new grandson born this last summer. I want to live to see all my grandchildren grow up and be fine.
I have a feeling this board is going to save my sanity. I'm so thankful I found it. God bless you all.
sunbirds, March 12, 2019 8:39pm EST
Spencer, giving up wine and coffee were the two hardest things about this diagnosis. I'm sure it won't hurt me to have a dry spell, but I hope I can have a glass every now and then again someday. I should be Italian because I really have the Meditteranean thing going on. Life without pasta and wine is hard.
Take care of yourself. Let's keep in touch. I read some of your posts. Goodness. It helps me to know we're all navigating this. You are like the afib guru. You know a lot.
sunbirds, March 12, 2019 8:40pm EST
Heartfelt, it wouldn't surprise me a bit if I have sleep apnea. I get up a couple times a night. I hardly ever sleep straight through.
Spencer, March 12, 2019 8:46pm EST
Sunbirds - Heartfelt brings some excellent points... Sleep. Ask your docs about a sleep study. That is also a significant source of the AFib and correcting that will be crucial to putting this into remission.
I'm just newly retired from the military and the stress, and lack of sleep is the cause of my AFib. I'm retired now, recently, and have a much lower stress life and I am trying to learn to sleep more than 4 hours still. Great for the military... bad for the heart.
Drawing blood a couple of times is standard in the ER. The blood draws have permanently damaged my right arm. So only draws from the left and I am getting draws every other week for just about forever.
Heartfelt has good advice...
In the Sunlight