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POTS syndrome with bradycardia?...

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harriet_1
harriet_1

I have recently been diagnosed with POTS syndrome, I also have hypermobility syndrome and early onset arthritis. Anyway, I went to the hospital last year as I noticed my heart rate (not resting) had dropped from 52bps (resting) to 41bps (middle of the day, sat up) They first said I must be very fit, I'm not VERY fit, I am in shape but due to pain in my legs I can't do more than a bit of walking. Anyway, they since diagnosed me with POTS syndrome bit haven't actually looked at A. why I have a very low bpm (when not standing and B. why it has dropped so much in the last 8 years. Had anyone else got any experience? The DR told me I just have a low heart rate, I could accept that if it hadn't already dropped further.

0 likes, 3 replies

3 Replies

  • sally104
    sally104

    Posted

    Hi

    I'm not a doctor, but I do have two young adult children (18 & 25), who both have Ehlers Danlos Syndrome and POTS which is one of a number of possible symptoms of Dysautomnia.

    My understanding is that with POTS there is actually nothing wrong with the structure of your heart, the problem is with the central nervous system which gets its messages with the brain in a muddle. It sounds as though your symptoms are quite mild, but basically your brain is telling your blood pressure to slow down when toy are lying down and then when you sit or stand it sort of goes Whoa, marathon coming up and raises very quickly. It can cause severe tachycardia, but I don't think thay can actually do anything its a case of managing the symptoms!

    The liklihood is that your GP has never had a patient with your condition, so you may need to do all the researching yourself. There is a leading national centre at Queen Square led by Prof. Mathias, you could ask for a referral or just contact them and ask for their information and also if they have some support groups that you could join.

    Big hugs xxx

  • SvenskaFlika
    SvenskaFlika harriet_1

    Posted

    Hi, I have "POTS" with Bracardia...but my doctor will tell you it isn't really POTS. Pots officially has the heart speed up when in the standing position...my heart slows to almost a stop and If I don't sit down I pass out. It was confirmed during a tilt table test. I have to wear compression stockings every day and like Pots patients I need to drink at least 2 liters of water daily, especially in the summer because heat makes it worse. I have exercise intolerance ( I have a low resting heart rate, but I was very athletic, so they assumed it was from my running days) and I had to get a reclining bike to exercise every day, which is key to this condition. Standing for long periods of time makes me faint, as does large meals and time in a hot tub or being outside for a long time during a hot day. I suffer from fatigue and if my bloodpressure drops too fast...lets just say I have to run to the restroom. For me there is no cure, but I work with a restorative yoga teacher to retrain my body to handle changes in head position. I have been told that my autonomic system in my veins in damaged and blood pools either in my ankles or my abdomen. I have hit the ground a few times and I have to be very careful to NOT drive if I have just eaten or if I feel faint. If you need encouragement or a listening ear contact me at _____. I am 53 years of age and have suffered from this along with other autoimmune issues for at least 10 years, but the last in the last year it has gotten worse. I am a writer now, I was a teacher but my health has made that impossible. Be kind to yourself and clear with those you love that this illness is not an easy one to live with. Get a tilt table test through a cardiologist to confirm exactly what you have, but it sounds like you will pass out during this test, which is uncomfortable. I don't know that there is an "official" name for this type of Bracacrdia because it is so rare. Best of luck, but I have a lovely life even with this illness, but I had to make adjustments. Karin

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    • sam26215
      sam26215 SvenskaFlika

      Posted

               I have not been diagnosed with POTS syndrome.  I find your response very interesting though.  I have been a mediocre runner for the last 35 years and a bicycle enthusiast for the last 50 years.   Even a kid in high school I used to take 20 to 30 mile rides regularly through the summer months.

              After being sent to drug and alcohol rehab in the Navy back in 1983 I caught the running bug.  I have never run a marathon, in fact the farthest I've ever run was 10 miles.  That was well over twenty years ago.  With my knee, back hip and ankle problems over the last few years I'm only running between 2 and 3 miles 3 times a week and that's been on the treadmill.   While my resting heart rate has been running between the high 40's and the low 50's ever since I started running there have been times when my heart rate dropped lower.  In 2004 when I'd went on a diet and lost 30 lbs my heart rate dipped into the mid 30's for a couple of months.  It gradually went back up even though my weight stayed the same.   A couple of years ago it dipped again for no apparent reason.  They first wrote this off as runner's bradycardia despite my miles had dropped to under 10 miles a week.  Last year when I fond myself falling asleep at the microscope I began to become concerned.  I also have spells coined as ocular migraine by my doctors (diagnosis of exclusion) another concern.  Unlike the couple month bout of extreme bradycardia I had in 2004 this bradycardia when it gets below 45 in not an even timing.  I went through the 30 day shackling to those telemetry leads and the button to press when I have symptoms.  I pressed the button for all the "ocular migraines I had and every time I woke up at the scope and they found no correlation at all.  They did wake m up in the middle of the night after my heart skipped a beat for 3 seconds.  

            Now to get to the point of all this several months ago I started noticing my heart rate being normal {for me anyway before I get out of bed and then dropping into the 30's when I'm sitting down.  It goes up into the 40's and 50's when I'm lying down and up into the 50's and 60's when I'm walking around.  I also have celiac disease and hashimoto's which I take pig thyroid extract for, both autoimmune diseases.  My cardiologist thinks I need a pacemaker,  He even sent me to an electrocardiologist last year.  They keep talking about sick sinus syndrome like it was the only thing to worry about.  I'd read about being tested for anti sinus node antibodies and the correlation for the need of a pacemaker.  But after asking my doctor he was told this test was only for research purposes and not to be used for diagnostic purposes.   I don't know if you'd figured this out yet, but I don't want a pacemaker if there is anyway to avoid it, short of death. 

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