kali Posted December 8, 2009 Report Share Posted December 8, 2009 Hi all! I'm new, but this seems like an amazing place with some amazing people. Just a little background: I was just diagnosed with POTS in August, but doctors suspect that I've had it at least 10 years, if not my entire life. Anyway, I was wondering if any of you have experienced anything like what I've been experiencing the last week or so. I've been keeping track of my heart rate lately since I've been feeling awful. It's not doing it's normal POTSy thing (e.g steadily increasing upon standing), but instead increasing, dropping, increasing again, dropping, etc. It's not uncommon for it to drop 10-30 beats and then jump back up again. Today it dropped from 140 to 80 bpm and it felt awful! It's also gone from 130 to 45 and then up to 180, which is quite scary. Typical HR readings this week have been like this (all within a second or so span of each other): 130 to 100 to 125 to 108 to 100 to 88 and then up again, constantly changing by the second. I feel like a ping pong! Before this, my heart rate was pretty steadily high. Now it's just all over the place. It might as well be constantly running high-I'm horribly symptomatic. Have any of you had this happen? Also, I've checked this against three heart monitors, so no technical problems and I've also checked against healthy family members, whose heart rates will register as steady and fluctuating by about a beat or two. So it appears to be me. I'm also not on any POTS medications, so that can't be it. The only thing different lately has been that I've been slowly withdrawing from Klonopin for my insomnia. I'm worried because I'm supposed to see Dr. Grubb soon for my POTS, but I don't know how he could possibly treat this as POTS anymore! Plus I feel awful. Well, thanks! Sorry if this appears incoherent! Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted December 8, 2009 Report Share Posted December 8, 2009 Well, no I haven't had that one....but it still doesn't seem normal to me...so somehow you have to get some help. I don't think it matters what it is,POTS, or otherwise...I would imagine Dr. Grubb could help. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted December 8, 2009 Report Share Posted December 8, 2009 Welcome to our Autonomically Dysfunctional Family!I get this too. Most nurses I've seen use the number that they see the most for my HR since it can fluctuate just like you describe. It will be at 119 for six beats and then suddenly drop to 80 for two beats and climb again.....up and down, up and down. Occasionally, I'll get a few "real thumpers!" where my chest will heave with a big heart beat or two. I have no idea what it means. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted December 8, 2009 Report Share Posted December 8, 2009 Both my HR and BP fluctuate all over the map, all day long. It's "normal" for me. I don't often use my monitor--although I tend to do so when I'm workout out to ensure I'm not cruising past what my cardiologist feels is safe for me.Nina Quote Link to comment Share on other sites More sharing options...
kali Posted December 8, 2009 Author Report Share Posted December 8, 2009 Thank you guys so much! It's completely new to me (and now I'm thinking most likely a result of Klonopin withdrawal since I have such weird reactions to medicine and haven't experienced this before), so I didn't know if it was in the "realm" of POTS/autonomic problems or something entirely different. If this continues, though, I'll probably get an EKG or Holter just to be on the safe side since I'm experiencing a lot of symptoms along with it. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted January 2, 2010 Report Share Posted January 2, 2010 Kali,welcome and I wanted to say Yes I know what you mean. My doc uses them term that I'm so, "plastic." In that one moment I'll be one thing and the next another.This is a wonderful place.... bellamia~* Quote Link to comment Share on other sites More sharing options...
flop Posted January 2, 2010 Report Share Posted January 2, 2010 I get that all-over-the-place heart rate readings too. In fact last time I was in clinic and the nurse did my lying and standing vitals she picked the lowest of the standing heart rates (117) to write on my chart (it had gone as high as 155 even on Ivabradine).I think that Klonopin can reduce some of the autonomic weird things that we get as it affects the whole nervous system so must calm the autonomic nervous system as well as relieve anxiety and insomnia.Don't worry about the appointment with Dr Grubb - I'm sure he has many patients with whacky heart rates!FlopFlop Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 2, 2010 Report Share Posted January 2, 2010 My heart rate will do this sometimes, particularly during exercise. The cardiologist explained that, for me anyway, it is a vagal reaction to the ventricle of the heart being completely emptied during a contaction. Apparently the walls of the ventricle will slam together and this triggers the vagal nerve to drop the heart rate and blood pressure to try to protect the heart. Quote Link to comment Share on other sites More sharing options...
tilly Posted January 3, 2010 Report Share Posted January 3, 2010 Hi Kali ... I am like this .. my heart rate and BP is all over the place ... I watch it going up and down even whilst I am laying on the bed watching TV, like there is no reason or rhyme why it is acting like this .. although there must ....I use a monitor most of the time it helps me to work with in the parameters that I set for myself, I set mine at 70 low and 140 high this alerts me to rest and let it subside for a while .. although it is going off all of the time at 140 .. I used to have it set higher at 150 but I thought this was unrealistic for myself as I do not think I should let it get that high ? I did not find any help from the meds so I use this a coping strategy ?. I would be interested to hear what Dr Grubb has to say about the erratic ness ?.. Quote Link to comment Share on other sites More sharing options...
Jordan Posted January 3, 2010 Report Share Posted January 3, 2010 Hey Kali! I'm new too!Yes i get that a lot. When I was in the ICU, everyone was shocked becasue my heart rate would change so much frequently. I think it's just a POTS thing because I have had several echos, EKGs, Stress tests, holter monitor and everything was pretty normal. I have had it where you can see my chest pumping and it feels terrible. Also, when it gets really bad, I get this rash. My skin gets really blotchy but it's not itchy or painful. I would not have noticed the rash except i was in the doctor's office and he took pics of it. Everything about POTS is SO weird. Good luck Quote Link to comment Share on other sites More sharing options...
Tammy Posted January 3, 2010 Report Share Posted January 3, 2010 Same here. I get the bp and pulse highs and lows within minutes of each other. I can be sitting and it will be 106/73 at 73 beats per minute and than stand for a bit and it will be 88/60 with a pulse of 130. Then if I sit or lay back down, it will go back to the lower rate almost instantly. Usually when it is really beating fast, I can't even feel my pulse and most of the time my blood pressure reading will error and the nurses that try to take it get frusrated and ask me if I get really low blood pressure readings because they can't get the machine to read. They usually just keep trying until they get a reading they like and mark that in my chart. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted January 3, 2010 Report Share Posted January 3, 2010 I wanted to add that when I'm in the hospital for hydration they will write hr 80-136 at any one position and call dr if concerned. I usually don't go up higher unless I've had to walk far and the bathroom is right in the room. around the home and out in the community is the real problem.bellamia~* Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 4, 2010 Report Share Posted January 4, 2010 I use my heart monitor to keep me from going too low or too high but after all these years, I now really know what my heart is doing! Only if I am doing some strenuous task like exercise or air flight or if I am sick will I use it.My low is set at 40 and my high at 145.I do this because if I get near 160 I can flip into SVT's. Also, I am usually lower in the evening. Quote Link to comment Share on other sites More sharing options...
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