POTS & now Bradycardia

[KDUB]

Hello everyone. 

I recently began a battle with POTS, and a complete life changer. I am still having tests conducted by my cardiologist, but as of right now whenever I stand my heart rate jumps out of this world. 140 and 150 (just standing) Before yesterday, my heart rate would be high even during sitting and sometimes laying. However, last night I noticed I felt dizzy and developed a headache. My wife checked my pulse and it was 47!!!! I don't think I've ever seen 47. I went to the ER, like usual, and they did a routine EKG and check up. They released me with the advice to follow up with my cardiologist. Ever since last night my resting heart rate has been between 50-55 bpm. This is new and abnormal. This scares me even more and I'm terrified to fall asleep. All of this has happened so fast, as 3 months ago I was perfectly fine. I feel as if my world is coming to an end. My life seems pointless at this time. I was an active athlete and a energetic person. Now I'm having palpitations left and right, and I'm terrified of dying. Once I finally began to adjust to the postural tachycardia, I begin developing bradycardia upon lying down. I'm trying to keep hope and faith. Does anyone else have these symptoms, or any advice? Please help me! 

Thank you,

KDUB

[haugr]

So sorry KDUB.  I had bradycardia when I was trying to get stable.  In my case it was a side effect of taking too much clonidine.  Once I cut back a bit my heart rate leveled out.

By the way, I know exactly how you feel.  I was also debilitated and visiting doctors and ERs multuple times a week, but I did eventually learn how to manage it.  Hang in there.  

[Guest KiminOrlando]

This seems to be happening to me too, suddenly after 30 years. No idea what has triggered it. My O2 seems to drop when my heart rate does. Does yours?

I would say keep a log and call your cardiologist. Mine is researching the problem for me. Evidently, I have some kind of lung involvement also. Probably not the case for you.

Let us know what you find out.

Kim

[htberg]

I have bradycardia.  My cardiologist is not concerned until my heartrate goes to 39, despite feeling faint at 50.  It goes so low at the grocery store when i stand and not move, that i have to go off hours and race through the aisles.  I always chew gum and sometimes start doing stretches and jumping in the aisles to get my heartrate up.  Sugar helps too so i always carry some type of chocolate or candy item with me as a preventative.  I also squeeze the back of my neck.  Not sure how i figured that out but it helps keep me from fainting.

[Guest KiminOrlando]

Good lord..... I am NOT going to start running through the grocery store flapping my arms. I already feel like enough of a spectacle. ??

I always feel like the lady security is watching anyway because I just sit in a chair for 20 minutes resting in the pharmacy but not picking up meds. The chair is by the meat case. I expect to get frisked someday because they think that I have purloined some sirloin. 

[KDUB]

Thank you to everyone who has replied so far, it means a lot. I've felt so alone during all this. Depression has become my worst enemy. Does anyone know of any chat rooms or groups people can join and talk with others? I'm hoping I can find a friend through all this as it seems I'm all alone. Any information is helpful. Thank you all in advance.

KDUB

[Guest KiminOrlando]

You aren't alone. I make light of it sometimes because some of the things we have to do are strange or make us high maintenance. I know there are meds they can give you so that your heart rate doesn't go too low, but I don't know if they do that with POTS. They haven't done it for me. They do with other heart issues. I have also heard of people getting pacemakers to keep from getting too low. A friend of mine had her pacemaker set to kick in if her heart dropped below 50, and she hasn't fainted from bradycardia since. 

Are your oxygen levels ok during the drops? If they are, you are probably in for an uphill battle. I have been told 'normal' heart rates range from 60-80, so 55 sounds 'normal'. One reading of 47 is scary- I have had 39 once and 44 a few times. My resting is usually upper 90s to low 100s. Keep a log with dates, times, how you feel and what you were doing when it happened. Details like that tend to carry more weight in my experience. 

Many people sleep with pillows under them so they aren't flat in the bed. Some buy sleeping wedges.

I assume they have checked your potassium and magnesium, especially if you are on Florinef.

Going from healthy and active to sick, scared and frustrated is difficult. This site has a list of support groups, so explore. There might be one in your area. There are no quick fixes or easy answers. We are a group of people who have been through a similar situation with varying degrees of success. Things get better, then things get worse, then they get better again. I would encourage you to search the forum for bradycardia and even pacemakers to read past conversations. 

Do research. Have you read the ebook about dysautonomia on this site? It is technical, but I learned quite a bit about the autonomic nervous system. It helped me understand more recent research and communicate more effectively with my physicians. If they decide what is causing mine, I will let you know so you can research and see if it is relevant to your case. I just saw my cardio on Thursday, but he is doing research to figure things out, so it may be a while. 

Nothing about this is easy. I hope you find answers.

Kim

[yogini]

I had very low sleeping HR and BP from time to time when my POTS was at its worst and my standing HR was the same as yours.  It is very scary to have such a big swing, but you might want to check with your dr about this symptom.  My dr told me it's normal - even for healthy people - to have a very low HR when sleeping.  He wasn't concerned. It helped me to drink large cup of broth followed by water a few hours before going to sleep.  

I think many others here on the forum with POTS have low HR from time to time.  It's counterintuitive.  Although the primary symptom in POTS is tachycardia, low HR is also a a common symptom.   You might find some helpful advice by searching through old posts.

[MomtoGiuliana]

My doctor told me that episodes of low HR is actually a fairly common finding in POTS patients as the condition progresses.  He didn't indicate it is life threatening.  Hopefully you can talk to your doctor about it.

[Womble]

I haven't been on here for ages, so am late to the thread, but actually came on today for the same thing.  I have pots and my standing rates were similar to yours till I started Ivabradine 8 months ago, now they don't tend ot get much hugher than 120, unless I push it or don't carry out mt conservative measures (rehydration/electrolytes water salt compression etc) satisfactorily.  My resting is generally around 58, but in the last couole of weeks, alongside a lot of gastric issues, I have started having drops to 44 seated and 43 lying down.  The only other time I have had this was when I was very  busy with a sick child and somehow managed to forget three consecutive doses of ivabradine.

Saw my gp today, unfortunately she caught a whole prolonged run of erratic beats when she checked my heart rate and freaked out slightly.  She wanted me to go to the emergency room for an ecg this evening, but as I was only there and had one a few days ago, I am at home continuously monitoring with the intention of calling my cardiologist in the morning instead.

I do know that when I have a high standing rate I can get overshoot down to lower numbers as it comes down on occasion, but that usually rights itself in a few seconds, this is very different and makes me feel really faint weak and woozy.

 

 

[KDUB]

Thank you to everyone so far! All the advice is so helpful!

[Fall-Di]

I have been battling a sudden low heart rate and low blood oxygen this week myself. Freaked the slippers off me.  Hr 38 and blood oxygen in the 80's. Lasted about a minute or two with chest pain.

Just got over a nasty virus that had my heart rate spiking in the 120's, I have been responding to meds and my own fitness routine and making some actual progress. My heart rate has never gone too high, but I'm a fainter and have seizures if I'm upright too long and not listening to the warning signs.

I wonder if it's a left ventricle dysfunction kind of thing, I plan to follow up with my Dr. Recently had some BP spikes of 179/98. All of this I think might be tied into the virus... 

Any chance you have a virus or an infection adding a little extra burden? Long shot I know, but this is new for me and it all happened during a virus. Just a thought.

[Lemons2lemonade]

Hi Kdub, 

I had that happen to me when i was taking midodrine. I'm not sure if the midodrine caused it or not because even after stopping it, it would still get low sometimes. But while on the midodrine it dropped down to 38 at the lowest and would hang around 45-50 and improved after i stopped taking it. Perhaps my ssri dosage also impacted this because i reduced it and it got better. I would say anything below 45 consistently merits an er trip and try to get admitted for bradycardia if you can--if they dont have an answer try to get them to admit you until they find that answer. I have said things before like, "well if you don't know what is causing it, i would like to be admitted so that the cause may be found" I would also like to add that you are definitely not alone. Depression i am sure gets us all at times and even normal people. Try to focus on the positive as best you can and sometimes you just have to sit back and perservere through the worst. Sending lots of hugs and love. You can do it!!!

[pb&jazz]

I too have had POTS, functional for several years now but 2 days ago my HR was 47. It felt like my chest wasn't getting perfused, strange feeling. After years of pointless ER visits I don't go anymore. I ate a bunch of food, did some squats and it got higher then I took a nap. Beens low 60s since. My resting HR is mid to low 50s lately and it just feels a bit low but I deal. 

[Flight272]

I sometimes get spells where I'm bed-ridden and half-aware with a heart rate of 50 or so, blood pressure at about 60/38, but my docs just say, "wow, that's low," and don't seem particularly concerned after they've done echoes and found no structural abnormalities. So I can't say I know of a reason for it, but in my case it doesn't particularly worry me. I suspect it's related to my flushing rashes, which they never found a cause for, but I think are probably Mast Cell Activation Syndrome. 

[Don]

If you take beta blockers such as Propanolol or Metoprolol or the like, these meds are associated with bradycardia.  During the day, my HR sits around 70 due to my metoprolol.  Without it, my HR hovers around 100-105 bpm.  But in the evening, when I've been relaxing for a while, I've received readings on my pulse ox as low as 38bpm.  My BP cuff says about the same thing.  I logged a 37 on EKG once.  It scared the nurse.  I'm having a sleep study done on the 21st so I'm curious to see what my pulse does in my sleep.  I take a medicine that sedates me so I'm curious what the study will show.  I sometimes have difficulty breathing and I'm wondering if it has anything to do with my HR.  

Side note: I have an autonomic neuropathy

[Weyland]

I have been having this lately myself . My hr is high all day and then at night my hr goes into the low 50s . If it gets around 50 or lower I just sit up or try to eat and drink something . Usually brings it up a bit....it's strange when your heart does the opposite of what you're used to with pots.

[m@t]

Mine averages 50 and sits at around 40 most of the time or down to 29 when asleep. Thats without taking propranolol..l

Heres the blurb from my holter monitor report for a lazy day...

I was still prescribed propranolol and have positive effects from it....

 

[Weyland]

4 hours ago, m@t said:

Mine averages 50 and sits at around 40 most of the time or down to 29 when asleep. Thats without taking propranolol..l

Heres the blurb from my holter monitor report for a lazy day...

I was still prescribed propranolol and have positive effects from it....

 

Wow that's low , anything below 50 is kinda scary.  What did your doc say about these results  ? Are you still taking propranolol with that low hr ?

[m@t]

I was fairly fit before I had all this nasty dysautonomia stuff start and most of the chaps I cycled with had resting rates in the low 40s its not uncommon.

Doc said it was nothing to worry about. Still on propranolol, it barely changed my resting rate but has stopped the massive rise on standing.

[Guest ANCY]

While healthy people can handle a "normal" resting heart rate below 50 it's important to consider if there are any symptoms associated with a drastic change between tachycardia and bradycardia. Went through this myself and wound up needing a pacemaker, (hr was 28 bpm by that time) has actually been the most helpful treatment for me so far, helps with my tachycardia as well. The time around getting my pacemaker was very scary, my EP told me months later that he was in fear for my life. I hope you continue to do well handling the heart rate, please be careful though, especially if you have any loss of consciousness.

[Sick Nick]

He'll my POTS suffering brothers and sisters and all you beautiful people!  I too suffer from POTS, was diagnosed at Stanford University 6 years ago. I recently have been getting low hr lately mainly between 50-60bpm. It's is extremely concerning as with POTS I have been suffering from tachycardia not bradycardia. I was put on another halter monitor for the last 2 weeks and awaiting the results from my cardiologist. I will keep you guys posted, but know that you are not alone. Also, any help from people that have gone though similar situations would be appreciated. My anxiety has been going through the roof as I have serious issues with death.

[BuffRockChick]

Hi @Sick Nick!  My resting heart rate is 52 - 55, varies with menstrual cycle.  It's a bit lower when I sleep.  The lowest I've noticed with heart rate monitor is 42 overnight, but it's usually getting to 44 at night.  I had a holter too but my cardiologist didn't comment on it.  Just said that my holter results were "consistent with POTS".  I notice my POTS symptoms are milder when my resting heart rate is lower. I don't worry about it.

 

[vemee]

I asked my pots doctor several years ago and he told me that this is a pots symptom.  He said pots used to be called something like high and low pulse syndrome.   I can't remember the exact title he used.  My resting pulse is in the upper 50's but I am on a beta blocker.  Before I knew I had pots there were times I would go to a check up and my pulse would be 44 and one time even 42.  The doctor said I was fine but I felt weak and run down.  The doctor was wrong.  I know of another person who passed at and cut her finger because she was using a saw at the time.  She was given a tilt table test and her pulse went down into the 40's.  Dr. told her she was in excellent shape and then beat her down claiming that she fainted because she cut her finger before she passed out and fainted when she saw blood. 

This is all due to doctors not knowing anything or much of anything about our condition.  If the ekg is fine and the heart is not blocked or functioning wrong then they blame the patient.  They fail (at least in my experience) to consider the rest of the circulatory system.  My main problem is that because of severe pooling my body acts like it is bleeding to death.  It shunts off areas of the body (like the brain) in order to maintain blood pressure, eventually the system fails and the blood pressure drops.  I have been banging my head against the wall trying to prove it.  I go to the dr. office with records of how my bp will fall after 1 to 3 hours of normal uprightness.  They give a stress test and say I am fine.  The last nuclear stress I had showed I had a reversible blockage which meant the artery was clear when I laid down but had a blockage when I stood for the test.  When they did the cath. it showed all was clear.  I said this proves what I was saying about the bp falling because of pooling.  It went right over their heads.  Frustrating.

Sorry if this is disjointed, brain fog is functioning fine.

[Chan]

Hi am 22 and just be diegnosed with pots.. I can't sleep as am scared my heart is gonna stop as my heart rate is 47 to 50 just sitting down an I get this awful whooshing fright feeling along with pain in my heart and chest. I was hoping doctors could help me but they don't seem bothered an arnt too helpfully at all. What drugs are any of u on? To help with the low and high heart rates