Guest veryblue Posted May 5, 2004 Report Share Posted May 5, 2004 Oh man last night was a bad night! I had one of my ever so famous attacks! I wake up from my sleep at like 4AM I am very dizzy and my heart is like 180 beats per minute! Then I kinda sweat. This happens one in a while. Does this happen to anyone else? I've read about IST and it seems like this might be what I have but I still get a 30 increase on standing and sometimes a small drop in blood pressure so then it seems like POTS. But then I ask myself...how could this be POTS...the "P" in POTS stands for postural! I laying down sleeping when my heart (which never is under 100 and down to only 90 on beta blockers) goes outta control! How can that be postural? How can blood be pooling in my legs in my supine posistion? I just am so frustrated and dont understand. I quit going to doctors cuz I went to 5 EP's and they all said IST...lets do an ablation. I told them about POTS and they told me POTS patient have near normal heart rates when laying down. I guess I'll ask the source (you guys) for some input here! So lucky me, I get to survive the day on only 3 hours of sleep! Ha and I have 3 classes to go to, final exams to study for and then soccer practice this afternoon...oh and did I mention that it's 90 degrees here today! Oh well, thats my daily routine and I'm only 21 so I can handle it. Juut let me know if anyone suffers from this fast heart rate when laying down or sleeping thing please! Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted May 5, 2004 Report Share Posted May 5, 2004 veryblue, I have POTS and I have awakened before with an extreemly fast heart rate. It was so bad once that my husband said that he could actually see my heart beating through my clothes. Of course that ment a trip to the ER. It does happen when lying down although I cant explain it. I hope this makes you feel better, it always makes me feel better to know that I am not alone. Good luck on your finals. Quote Link to comment Share on other sites More sharing options...
Merrill Posted May 5, 2004 Report Share Posted May 5, 2004 Veryblue, have you worn a 24 hour holter monitor yet? I can't remember whether you've said that you've seen a cardiologist (or electrophysiologist). If not, you need to get to one soon--and they need to monitor your heart rate continuously for 24 hours or more as you live your normal busy daily life and rest at night.People with POTS can definitely have episodes of fast heart rate during the night and while lying down. I know I do, and I also wake frequently during the night. (You should have called me last night--I was up! ) I, like so many others with this and without this syndrome, have very very vivid dreams--and those can kick off an episode of rapid heart rate while lying down. The stress of frequent awakenings and the worry that comes from not being able to fall back asleep--along with the conscious perception of other pots symptoms (like for me, numb hands, arms, and/or feet) can also make the heart race.It's not the case, then, that people with pots can't have rapid heart rate when lying down. But it's also true that people with pots do have lower/normal heart rates during sleep--it's just that there are occasional episodes where the rate increases.It IS the case that people with inappropriate sinus tachycardia DON"T have lower heart rates during sleep. IST people have high hr all the time, as your doctors have said. I hope this makes sense -- take care,Merrill Quote Link to comment Share on other sites More sharing options...
danelle Posted May 5, 2004 Report Share Posted May 5, 2004 Veryblue, I'm glad you brought this up. I have been wondering the same thing. I have POTS and like you was thinking well then why does my heart rate wake me up from a sleep at 150+!!! It comes in spurts where it will happen several days in a month to every other month or so? Figure that one out. It also will wake me up being very irregular but not necessarily fast. It all scares the stuffing out of me. THere is nothing worse than waking up to that in the middle of the night. Hang in there and do try out a monitor if you haven't already. Quote Link to comment Share on other sites More sharing options...
Guest veryblue Posted May 5, 2004 Report Share Posted May 5, 2004 Merrill...I have had holters done...my heart never goes below 105 without the help of beta blockers! Not even in my sleep. Sometimes I get attacks where it geos really high (last night) but it never ever slows down. If I dont take my betas then it would never stop pounding away. Humm...I'm begining to question if this whole thing is just not IST...it seems like you guys have episodes where you get rapid heart rate...but not constantly like me. Well if its IST then I can have surgery and if its POTS my docs said since mine is so mild that I have a 90% chance of it going away in 6 months to a year! Does anyone know if that is true or not? Quote Link to comment Share on other sites More sharing options...
ethansmom Posted May 5, 2004 Report Share Posted May 5, 2004 I have had two episodes of "SVT" where my heart began beating out of control, which warranted a trip to the ER. One of those episodes woke me from a dead sleep and my HR was 205 bpm- so I know how scary it feels. I haven't had any more SVT attacks since being diagnosed with POTS, but I do occasionally wake up to a pounding heart- I find that guzzling a glass of water or gatorade and relaxation breathing really helps. Has anyone else ever been diagnosed with SVT? Quote Link to comment Share on other sites More sharing options...
danelle Posted May 5, 2004 Report Share Posted May 5, 2004 Yes, I have had MANY MANY episodes of SVT. I have been on atenolol for 17yrs now (beta blocker) and it still doesn't control all of it.I will have spells with SVT but daily have sinus tachy, and crazy arrythmias with 50-62.5mg of atenolol which is a large dose considering I started out on 6.25mg years ago!! I know I couldn't survive without the atenolol but I wonder too if maybe I have more than POTS, before I started the atenolol I would have SVT several times a day but at the same time would dip into the upper 40's sometimes in my sleep, when I wasn't waking up with another run of SVT or sinus tachy. I have never had an EP study because I am beyond terrified of having one-that word doesn't even do my feelings justice. I did have a heart catherization done a year ago which totally freaked me out even with tons of meds on board(IV benadryl, valium, 3 doses of versed, and 2 doses of phentynl-not sure if that is spelled right) I remember every bit of the procedure and made my doctor stop when he started to enter the left atrium because of the runs of PVC's, small run of vtach. I don't know how I got through all those meds but I can say afterward-when I calmed down that my BP dropped pretty low and I slept for 14 hours. The best sleep I've had in years. But because I was so tense(atleast I think this is why) I have some groin nerve damage. So I can't see me ever having an EP study done-but never say never---- I know.Anyone know if this sounds like two things going on at once or just POTS???? Quote Link to comment Share on other sites More sharing options...
Merrill Posted May 5, 2004 Report Share Posted May 5, 2004 VB--on the basis of your posts here and earlier, I'd say it sounds more like you have IST than pots--but I'm not a doctor! I also don't know whether you've had the tilt table test, which is the test considered diagnostic for pots. Have you had the ttt yet? You might seek that out if not. I don't know very much about possible treatments for IST; sinus node ablation is one of them, and you've mentioned that. Does it ever resolve itself on it's own? That's a question for your cardiologists, I think.best,m Quote Link to comment Share on other sites More sharing options...
morgan617 Posted May 6, 2004 Report Share Posted May 6, 2004 i was diagnosed with ist versus atrial tach and i did have ablation. they found an abnormal area, but even after they ablated it, it was variable. ten days later it all came back after a night of svt, vtach and other assorted heart hijinks. about six months after the ablation ( i have never been able to work again and ssdi on first try) we got a packet from ndrf and they said do not do ablations for dysautonomia. oops. too late. now my heart is really crazy wacko. i truly believe there is no reason why a person with pots wouldn't have tachycardia lying down. the heart just gets irritable from being over worked. and there can be areas that just take over and set off rapid fire heart beats. it sure doesn't feel benign when it's happening does it. morgan Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted May 6, 2004 Report Share Posted May 6, 2004 I've had the "waking in the middle of the night with a fast heart-rate" too. I haven't heard a good explanation for that one...it can't be too much blood pooling in my legs because of gravity, now can it? I think there is A LOT doctors still have to learn about these disorders. Michelle Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.