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I feel like my heart is racing but its not. However, I am having the other symptoms of an episode ie. nausea, dizziness, loss of appetite, tiredness, confusion etc. At first I thought that maybe my body was trying to regulate itself, but this has gone on for a week now. Has anyone else experianced this?

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Hi April,

I've been having the same problem for almost a week, too. I've had symptoms of POTS for over a year, probably closer to two, but I didn't get bad until this past November when I started fainting. Along with the fainting I started having what I called "episodes" in mid-December. I would sort of space out, my head would hurt, I couldn't concentrate, I felt light-headed and heavy-headed at the same time, I could feel my heart beating and it felt out of rythym, I'd get nausous sometimes, and sometimes my legs felt like they couldn't hold me up and wouldn't work right. I had pains behind my right eye and in my jaw and neck and my right hip and knee. My eyes would flutter uncontrollably, and my hands would quiver. I didn't always have all of the symptoms, but most of them. The episodes and the fainting got so bad that I couldn't stand for more than a couple of minutes. I was in and out of the hospital and ER several times during this period, but it wasn't until January 1st when they finally made the diagnosis of POTS. I've been going to UVA Medical Center and they supposedly have a specialist in POTS. My TTT was the worst they had ever seen, so I guess you could say I was in terrible shape. My heartbeat and blood pressure were out of control.

I was put on Midodrine and Florinef and Paxil. I'd been back to see my doctor, and I couldn't tolerate the Paxil so I was switched to Zoloft. By early February I was feeling so much better that I made plans to return to work February 16th. A couple of days after I started back, the episodes started again, but they were so much worse because the quivering became shaking attacks, like seizures and I was crying a lot. I tried to get in touch with the Neurologists since my GP doesn't know anything about POTS. I finally went over to the clinic (I also work at the Medical Center). I was crying and could hardly walk and I begged them to let me have an appointment with the specialist. They were very nice and made the appointment for the very next Monday. But to my great disappointment, he, too, said it was anxiety and that I needed to increase my medicine. He said my symptoms were not POTS related, but was anxiety. He made me an appointment with a Psychiatrist since they supposedly know more about those meds. That was my long anticipated meeting with the "specialist".

Well, to make a long story shorter, the Psych. increased the Zoloft, gave me Lorazapam and Xanax because she thought I was having panic attacks. The Zoloft seems to have helped even out my moods a bit. I'm not crying anymore. The Lorazapam helps me sleep at night, but doesn't seem to do anything to relieve the episodes. The Xanax didn't do a thing for anything. I felt absolutely no change when I took it. I don't believe these episodes are panic attacks.

After reading what a lot of others have written in this forum, I believe that these episodes we're having are symptoms of the POTS. I'm sure some of it is anxiety, too, and I hope that they will abate. But for now I seem to be in a cycle of having a several good days, and then having several bad days. The good days are the ones that are realatively free of episodes. The bad days I'm sure you know about. One good thing, though. On my good days I'm able to do a lot of things I like - cooking, gardening, taking walks, playing with my dogs, etc. I just have to learn where the boundary is because sometimes I over do it and suffer the next day.

When I'm having those episodes and my heart feels like its racing and my chest hurts, I try to breath deep and slowly and think about something pleasant or if I'm at work I try to concentrate on something like looking at a plant. The pain and racing heart seem to ease up in a couple of minutes. I know my heart is fine because I've had every test imaginable. It's the responses that are so out of whack, and they aren't life-threatening. Try to hold on to that, April. It is so scary, and frankly it still is. But I know that the episodes will pass and I'll feel better.

I hope my story has helped you some. I've really only started my journey with POTS as I suspect you have, too. I've learned a lot from this forum and I hold great hope that more research will soon discover the underlying cause and then a cure. Hang in there, April, and know that there are many people here who care about you.

Deb

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deb, thanks for the encouragement! I have been dealing with POTS for 4 years now, since I was 17. Its just lately that it has gotten bad. I do feel better just knowing that I'm not alone in this. My husband tries to be there for me but he gets frustrated because he doesnt know what I'm going through. I think that my body is trying to fight something off. Today I have a fever and my throat is getting scratchy. Maybe thats what has been going on. Again thanks for the support.

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I think our bodies are far more sensitive than other people's when it comes to the onset of a cold or virus or flu bug--the kinds of things that hit everyone from time to time. I can feel it for a day or two before the true onset of viral symptoms (the fever, sore throat, runny nose, and all the rest). I feel shakey and weird and completely off my game... For me, these precurser symptoms are harder for me to bear than the viral symptoms when they finally take hold! I just try to stay calm, take mega (and I mean MEGA) doses of vitamin C, keep drinking gatorade and other fluids, and get extra rest if possible. And remember, this too will pass.

m

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