Jump to content
Search In
  • More options...
Find results that contain...
Find results in...
~Naomi~

Is Your Heartrate Under Control?

Recommended Posts

Have others found a way to get your heartrate under control... or are you spending your days like me with tachycardia everytime you're up and about? I feel foolish even asking this - I've been at this so long and still haven't gotten a handle on any of these symptoms. I asked my PCP if I could try Propanolol and he said no way with my low BP's. How are you guys doing it? I need something that's going to stop this heartracing insanity without making me dizzier. It's hard because everything I take makes my head feel weirder than it already does. I'd like to hear too if you've tried everything and still deal with tachycardia - so I (selfishly) won't feel so alone. :unsure:

Share this post


Link to post
Share on other sites

I take a very small dosage of Coreg which worked for awhile to control my heart rate but its not working anymore. My blood pressure does not drop low so my situation is different from yours. I went in a cold pool yesterday and it helped while I was in there but as soon as I got out it started again. You are not alone with this. My heart rate is over 100 somedays before I even get out of bed,

Share this post


Link to post
Share on other sites

It's on and off for me. I was doing somewhat better for a while but I feel like I am going backwards right now. I had to stop the low dose prednisone I was on so I suspect that has something to do with it. I have been coming much closer to passing out in the last 4 weeks than I had in a while and my migraines and tachy have spiked too.

This morning I thought I felt ok, so I walked the dog at 7 a.m. before the heat got bad hear in Maryland. On the way back (I was fine fo the rest of the time), when I got about 20 feet from my house, it started to go badly...my HR went up, I started with the air hunger, and the drunk feeling. I got in the house and stood in front of the window AC...had to stop that because I couldn't stand any longer. I had to snatch an ice pack and get to the couch. I don't know if I fell asleep or passed out for a bit but I know I lost some time. On Father's Day, I sat down to dinner and was fine...three bites later I was semi-conscious with my head on the dinner table. Mom and stepdad had to help me to the couch because I was too weak to get there on my own...I had been fine all day.

Share this post


Link to post
Share on other sites

You aren't the only one Naomi :( I was doing ok for a little bit but then had to come off the beta blocker because it was making my blood pooling so much worse and I gained 25 lbs in 1 month...yikes....I also cannot start my saline IV infusions because they are unable to tap any veins anywhere (they are talking a porta cath and I dont want to go there).......so now I am back to being up and down again with the heart rate control.....now I am actually having bouts of bradycardia which I never experienced before the beta blocker....even though I have stopped it its still happening.....thats scary too! Sometimes I am tempted just to stop all the meds as I wonder in the long run how much of their own damage they are doing? So sorry you are still struggling too :( big hugs!!

Bren

Share this post


Link to post
Share on other sites

I was so sad when Ivabradine gave me a histamine reaction and my legs were on fire for days!!!

Also i am with you on that one Bren, as far as Beta Blockers go i was only on them for 2 weeks then had to stop, 6 months later still my heart plays up at night time in a jumpy way that it didnt use to before! I feel exactly the same as you, we constantly look for different approaches yet face the same problems with tolerating the meds.

Share this post


Link to post
Share on other sites

Diamondcut...............I hate it that Ivabradine gave you that reaction! Are you 100% sure it was the medication? The BB's gave me such horrible fatigue and I still had tachycardia :(

liz

Share this post


Link to post
Share on other sites

I'm always over 100 when up and doing stuff... What's normal though? I mean, I'm chasing two crazy girls around all day going up and down stairs & my house etc.. It doesn't necessarily bother me, so is 110 a problem? Any idea what a non-pots persons HR is while up and active? Cause resting HR is different than a normal active Hr Kwim?

Share this post


Link to post
Share on other sites

No my heart rate has never been under control. Even on a beta blocker, I was hitting 150+ so I decided to just stop it. I couldn't see the point in taking it. haha

Share this post


Link to post
Share on other sites

Ive never been able to get mine under control. Its sad but it has become so much a part of my life that I am just used to it. Its so normal for me to feel my heart pounding away that I would probably think something was wrong if it actually were below 100, lol. The dizziness, head & neck pressure, and arrhythmic beats bother me way more than the tachycardia. Funny how well we can adapt to some things :(.

Share this post


Link to post
Share on other sites

Mytwogirlsrox-- normal adults do not go above 100 when standing or walking around. Most are in the 90's while moving around. With exertion most people can get their heart rates up to 130's, but usually they have to exert themselves VERY hard to get it any higher than 150.

Share this post


Link to post
Share on other sites

I can never find any real info saying that ... Do you have a source? Everything I read says that your resting should be between 60-100. Is there an average walking HR? Everyone is so different. I know a Dr who drinks a ton of coffee & candy so her(walking around) HR is always above 120 she feels more energetic lol

Share this post


Link to post
Share on other sites

Not sure about a written source, though Im sure if you researched you could find one :). I work in cardiac telemetry so its more of a personal experience type of knowledge, lol. Its very rare to see someone with a heart rate over 100 from just standing up. When patients are walking around the halls their heart rates are anywhere from high 90's to 110, but rarely above that. When they exercise its usually anywhere from 115-130. Other factors such as infection, pain, or medications may elevate their heart rates, but I rarely see patients with orthostatic tachycardia (I can count 3 in the past year).

Share this post


Link to post
Share on other sites

Diamondcut...............I hate it that Ivabradine gave you that reaction! Are you 100% sure it was the medication? The BB's gave me such horrible fatigue and I still had tachycardia :(

liz

Hi Liz

Yes I am 100% on the Ivabradine, after 4 hours of taking a quarter of a tablet my legs were on fire and i couldnt sleep for days. It took 5 days after i discontinued it for the itching to stop. I did try again the week after and exactly the same thing!!!

But i am so pleased it is working for you. Here in the UK only a few months ago it was approved on the NHS and it has helped lots of people with Angina. Hopefully it wont be long til its approved where you are.

Share this post


Link to post
Share on other sites

On Father's Day, I sat down to dinner and was fine...three bites later I was semi-conscious with my head on the dinner table.

This happens to me too while eating. Not quite as bad as you describe, but suddenly in the middle of eating the dizziness becomes much worse - like I'm becoming drunk.

I'm surprised how many people are still struggling with tachycardia. I thought there would more responses from people who found a solution. I think I'm still in disbelief that there are actually other people out there who feel exactly like I do.

Share this post


Link to post
Share on other sites
Guest Alex

Unfortunately my HR is not under control, nor is my BP despite all the meds I take.

I will admit I have days when I just about force myself to ignore my tachycardia and I manage to function somewhat like a normal human being.

But then there are days like today, and yesterday, and the day before that, and the day before ... you get my point when I could be sitting down, minding my own business and all of a sudden my heart decides to either literally jump from 70 to 140 bpm and then back to 70 in a matter of seconds ( I can proudly say that I have proof of this on my latest Holter monitor recording - yay me!) or to slowly go - like today - from 67 to 72, to 78, to 85, to 99, to 110, then gradually back to 70. I know my HR monitor is accurate as I have tested it against hospital machines, so I am not dealing with machine errors here, but a POTSy heart/body.

I could say that I have gotten used to these episodes, but that would be an understatement - they frustrate me, they drain me of energy, and at times I admit they scare the **** out of me.

Exercising is a completely different "animal". 5 minutes on the recumbent bike and my HR is at least 140. Given though that I start with a "resting" rate of 100+ that should come as no surprise, should it.

So, to quote Mytwogirlsrox, what is normal?

Rissy2D - I hear you. The tachy is not a nuisance like it used to be in the beginning of all this, it's the "aftermath" of a nasty - out of the blue - heart jumping out of my chest - skyrocketing blood pressure - pounding head - chest pressure - and the rest of the "blessings" that makes me wonder - what now? When will it hit me again? How long will it take me to recover this time?

Life's never boring with POTS.

Alex

Share this post


Link to post
Share on other sites

It seems I'm the only one but I'm pretty sure there are more. I got my hr (more or less) under control with SSRI's. My hr got up on standing from about 60/65 (horizontal) to over 180's up to 200 (standing). I started off with 10mg which kept hr down at around 130's so big approvement but then my neuro (and I) agreed on trying 20mg which worked better. I think I now go up about 10 to 20 beats and thanks to octreotide my bp goes up now too on standing.

Every now and then I do get strange readings where my hr goes down and bp up but considering where I'm coming from I can live with that :).

Share this post


Link to post
Share on other sites

Alex,

You have described two hr episodes that I have -the sudden jumps and the slow steady increases.

I have this on tape now so the doc finally believes me but it is a lot to deal with.

Also the last tape showed pauses - what does that mean?

Share this post


Link to post
Share on other sites
Guest Alex

Alex,

You have described two hr episodes that I have -the sudden jumps and the slow steady increases.

I have this on tape now so the doc finally believes me but it is a lot to deal with.

Also the last tape showed pauses - what does that mean?

Emma,

I sent you a PM.

Share this post


Link to post
Share on other sites

I'm one of the under control ones - perhaps *too* under control. It's the only POTS thing (and its resulting palpitations) that I've been able to get largely under control. Any of diltiazem, atenolol, and propranolol have been successful at controlling my heart rate - though diltiazem made everything else worse and atenolol made me really tired. These days my resting heart rate (and even sitting sometimes) is around 60, walking I get up to about 105, recumbent bike up to 130, and really exercising hard (like walking up a really steep hill where the bus doesn't go) I might hit 150-160 at the most. A big change from the past! Right now sitting my resting heart rate is 51, which is kind of low. Maybe I need to back off of the propranolol a little more... hmm. Or it could be the pyridostigmine, come to think of it. Sadly keeping my heart rate under control doesn't seem to correlate with anything else other than maybe some mild increase in standing time.

Share this post


Link to post
Share on other sites

My doc has been weaning me off a lot of meds over the past couple months. I am definitely having more issues with tachy now that I'm off the bupropion. While I was on that, it seemed like most days I had the tachy controlled with the propanalol and the BP issues addressed with the midodrine. Since my POTS doc was not the one who started any of those meds, he wanted to get me off stuff and see where I was at baseline. Not doing nearly as well off the meds.

Sure wish you were having some success with SOME type of treatment Naomi!!!

Share this post


Link to post
Share on other sites

My heart rate isn't under control because even half or a quarter of the smallest beta blocker dose leads to me becoming so faintly. Last time I tried beta blocker (then halved smallest dose when I started becoming faintly) it ended with me sitting up in bed and blacking out.

Tried BB too many times with the same result to bother with them again.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...