Heart Issues

[valliali]

do any of you guys find your heart issues to be the biggest concern?

my heart is out of control, i have no idea why, and it is causing me to live my life in terror.

i have been diagnosed with IST, but i also have these episodes of what has been diagnosed as sinus tachycardia as well, only they occur after my heart rate has been up for awhile and it is starting to come back down. so if i walk around for awhile, or if i am anxious for awhile, or when i used to drink caffeine, i would get the IST because my heart rate would stay around 200 or so, but then, when i started to relax and come down, i would get these "episodes." heart rate would shoot up, pound out of my chest, cause severe and debilitating panic, shaking uncontrollably, and blood pressure would skyrocket.

i had one of these episodes during my tilt table test, after the isoprol (?) was injected. the test was over, the doctor was telling me the results, and then it happened suddenly. the cardio was there, and he did tell me it was sinus tachycardia. it is hard for me to understand how that could be though because the heart rate and force was dramatically different from the sinus tachycardia i had been experiencing from the isoprol. they kept my heart rate at around 130 on the drug, stopped the drug, heart rate started to go down, and then all of a sudden it shoots up to 180 in an instant? with severe pounding and incredible panic?? my cardio said he had never seen nor heard of this reaction before and the only explanation he could offer was that my sympathetic nervous system was "catching" in between the process of my body slowing down after it had been up. so he thinks i could still be surging norepinephrine though everything else is slowing down.

i am just wondering if anyone else has this???????

i felt really good yesterday and decided to speed-walk a mile on my treadmill. felt really good the whole mile, even jogged a bit, heart rate was really high, around 210, but i still felt ok, then when i stopped and started to walk it off, had this episode. during the episode, my heart rate was around 180, which is even lower than it was when exercising, but the symptoms are incredibly debilitating. my doctor told me not to worry about dying, but that is the least of my concerns when this is happening. it is so uncomfortable i almost want my heart to just stop and put me out of the misery (not really, but in the heat of the moment, it is THAT uncomfortable).

these episodes are causing me to live in terror. i also had them when flying, i think from the change in barometric pressure, but again, now i will live in absolute terror the next time i have to fly. i have flown all over the world, just a year ago, prior to these problems and now i am completely dysfunctional. how could this progress so rapidly?

anyways, i am just wondering if i am alone in this!!!! i have also been tested as having low normetanephrine levels, which haven't even remotely been explained to me, but i am wondering if it is all connected. any feedback would be so appreciated! thank you all for listening!

[daisy]

Yes, any time our hearts are involved it is very frightening and extremely unsettling. With time, I have realized that I am not going to die and have gotten much better at controlling the panic that automatically happens with my episodes.

I also experience the same phenomenon you do after exercising. I can feel find during exercise but when I stop I know I'm going to have trouble for a bit. I remember reading a paper somewhere by Dr. Grubb saying that this is common. It has to do with our bodies having to readjust to gravity.......going from motion to being still, we have problems with that.

Hang in there....

[valliali]

daisy! so you have these sudden very rapid and pounding heart beats after exercising??? accompanied with panic?

i am pretty certain, almost positive, the panic is not mentally induced. i mean, they sure do scare me, but i have gotten quite adjusted to lots of uncomfortable heart palpitations and rhythms that no longer cause me to panic. but the episodes i describe feel like adrenaline, or norepinephrine as my dr. suspects, is just being dumped profoundly into my system. it causes my blood pressure to soar and i tremble like i just sat in an ice bath in the north pole.

i should look for that info from dr. grubb.

i am concerned because my blood pressure monitor detects and irregular heart beat when these occur.

however, when the same thing happened during my TTT, or at least what feels like the exact same thing, my cardio said that it was sinus tachycardia - the rhythm was normal. he is a good dr so i have to trust that he would be careful to rule out something more serious, like vtach or any other svt. but then i don't understand why my blood pressure monitor picks it up as an irregular heart beat if there is no change in rhythm?

so yours also occur after exercising? does your heart rate get really really high during the exercise? do the heart issues come on when your heart is slowing down, then kicks back up really fast again?

sorry so many questions!!!!!! just trying to understand this since even my cardiologist called it a phenomenon. i'm beginning to feel like my doctors who treated me had absolutely NO idea what was going on with me, so now i am skeptical about everything that they told me was benign.

[mom4cem]

I just thought that when I experience that scenario is that it is from my body just not knowing to shut off the adrenaline. That the exercise is over. I can feel fine while I'm walking or exercising and I'll also do a cool-down, but my heart rate will stay high and then many times starts to go faster and stays fast until I take a beta to bring it down. I have chills, teeth chatters, feel uneasy, have a hard time sitting still and usually a potty run (sorry about that) I was told I was in sinus tachy,,(I wore a heart montior for a while are caught some of these events).

Rhythm while it is in sinus rhythm, could be that irregular-is meaning tachy. I still feel the panic with it, I think some being me unconsciously thinking "oh, no, here it is again" and partly that the adrenaline can cause those panicky feelings.

Do these events last long? Maybe ask for a heart monitor to catch it again in action? I do think too that there is so much Dr's don't know. How many syndromes have they listed over the years, that is after years and years of people having symptoms that Dr's could not pinpoint to some disease that they already knew about. CFS, MVPS, POTS etc.

[firewatcher]

I have a "hyperdynamic" heart, which means it beats really hard. I also have inappropriate HR response to exercise, which means way too fast. During my cardio stress test it was 180 bpm while walking and they stopped the test. What they did not catch was the after effects of exercise: If I stop, just stop, or slow down too fast, my heart rate will recover (slow) then speed up again and my BP will get really narrow: 87/80, 123/107, 96/74 (today.) I have never had anxiety with mine, just really light headed. Activity also makes the tremor/shakiness worse. I don't know why, but you are not alone.

[flop]

I wonder if this explanation would fit your symptoms -

When exercising the blood is rapidly pushed from the leg veins back up to the heart by the activity of the leg muscles (no blood pooling during exercise). When one stops exercising the leg muscles relax and stop pushing the blood upwards so blood suddenly pools in the legs (+/- abdomen), also if you are warm from exercise blood vessels near the surface will dilate to cool you down drawing more blood away from the central circulation. The pooling and dilating of veins causes the blood pressure to drop. The body senses this abnormal drop and tries to correct it by telling the heart to beat faster (excessive POTS response), in some people the body may also release adrenaline like substances to try to raise the BP.

Just a thought,

Flop

[daisy]

Yes, I get those symptoms too. The shakiness and trembling you feel could be caused by your bp going so high. I also get what I call a "weak" feeling in my chest. The same sensation described as "butterflies" in our stomachs but in my chest. It's odd. I do think after exercise that those of us with IST and POTS experience more adrenaline surges. It is harder for our bodies to readjust to gravity when we stop and sit down. Part of the panic you are feeling could be due to the adrenaline but then I know for me, I used to panic because I was anticipating feeling panicked! It can be a viscious cycle....

As for the irregular heartbeat - if it is a consistent thing I would talk to your cardio doc (did you find one yet?) and see if you can get on at least a two week monitor. Arrythmias (most of them benign but uncomfortable) don't perform on command unfortunately. They can be hard to catch. You may be experiencing something when you are exercising that didn't show up on your tilt. 24 hour monitors are not always enough. Have you had a stress echo where they do the echo after you are walking on a treadmill?

Hang in there - I know this is so frustrating for you and you want to get on with your life. If it is any comfort, you are in good company.

[valliali]

thank you guys so much!

i have to say that while i feel so sorry that anyone else has to experience this discomfort, i am comforted in knowing that i am not alone with this issue. it sounds like you all cope with it much better than i do! i become a completely freaked out, panicked mess.

for those of you who have the heart rate issues, have you flown on an airplane? i kept having these episodes recently while flying, with my heart rate going up to near 200 very forcefully and palpitating a lot for no apparent reason, and couldn't understand why flying would cause such a reaction. perhaps the explanation provided with the blood pooling has something to do with it?

i am just curious:) all this makes me wish i had been a biochemistry major in college - not philosophy!!! it's very fascinating.

[jbrian00]

I have had these tachy episodes myself...fast heart rate, uncontrollable shaking, shortness of breath, lightheadedness...the works. They first happened when I tried to go off of the antidepressant I was on, Cymbalta. While the first attack happened when I was on the treadmill (and scared me so much to call 911 and end up in the ER), it then started happening even just sitting still on the couch relaxing (or trying to, at least). My heart rate hasn't quite gone up to 200+ (thank god)...it maxed out at around 160bpm. Of course I was anxious the first couple times (which didn't help matters), but found out that the surges only last approximately 30 minutes or so, so I learned to let my heart run it's course, and know that it will settle down after a while.

I had to go back on Cymbalta because of this and some neurological symptoms. I was at the point where I knew if I moved at all, just to even get up and stand up, my heart would race, so I just sat on the couch most the day afraid to move. Going back on Cymbalta has really helped out with these heart surges...I don't get them much anymore, thankfully. So may I ask have you tried an SSRI/SNRI? The difference was like day and night going off Cymbalta, making my symptoms so much worse, and going back on made a huge difference too, so evidently it is helping me cope.

Hope you find relief with something,

James

[valliali]

Hi James -

I'm sorry you are dealing with these heart episodes, they are so terrible. Have you had a cardio look at them? Do you know the cause of yours?

I have tried an SNRI - Effexor - and had a major reaction to it. For six hours, my heart was pounding at 200, my blood pressure was wickedly high and I was having a lot of mental reactions. My doctor thinks this is important to understanding what is going on, but we just aren't sure what yet. We suspect that the enzyme that is used to metabolize norepinephrine and epinephrine is not working properly, so the SNRI promoting more norepinephrine would obviously make things very bad. The enzyme is also used to break down serotonin, which I have had high levels of, so it might also make sense that the SNRI could have caused a serotonin syndrome reaction.

But, at the end of the day, this is all speculation because there is like zero information out there about these kind of issues.

Do you also take a beta blocker?

[jbrian00]

I don't take a beta blocker anymore...in fact only took one about 3 years ago and caused incredible fatigue. I do have a bb rx on standby from my PCP in case I need one.

From my understanding, manaomine is the enzyme that breaks down serotonin. I have read in POTS that the Norepinephrine transporter protein deficiency could be a culprit. In that case I beleive an SNRI is beneficial cause it basically overrides the NET protein. But in short, I don't have a clue as to what is happening with me. I'm not sure there's any way to know. All I know is that I don't have the heart surges when I'm on Cymbalta, and I do when I'm not.

I hope you find something that works to calm you down.

James

[E246]

Hi, just read the posts about tachycardia and and really identified. the posts were from some time ago has anyone found an answer to the adrenal driven fast hr's (sometimes there is no adrenaline and sometimes i cannot control it). i have run into a period of random tachycardia, irregular hr and adrenaline surges. i felt very alone until i read the posts. i get terrible chest pain and pressure with it and pain down my arm. after an episode i feel ill for some days and then i am better again with just normal pots symptoms. my doctor wants an implanted tape recorder to see what is happening. it was that or an ablation and i have heard ablations often make pots worse. this spell of weird hr's started after a terrible flight - i will never flight again until i have sorted this out. but again -does anyone get chest pain at the same time - i feel like i am having a heart attack.

so grateful for this site - thanks

[abetterjulie]

i felt really good yesterday and decided to speed-walk a mile on my treadmill. felt really good the whole mile, even jogged a bit, heart rate was really high, around 210, but i still felt ok,

As a retired nurse, I would like to say that a heart rate of 210 is not okay. That is too high for functional blood flow. You should try to only exercise to a heart rate that is recommended for your age.