Alexander Posted November 21, 2003 Report Share Posted November 21, 2003 Dear All,The title of my post might surpise some of you (bradycardia) since this is a Postural Tachycardia Syndrome Forum...I shall try to explain.I was diagnosed with POTS by Prof. Mathias in 2002 (England). I get all the nasty symtoms (lightheadidness, orthostatic tachycardia etc). However, (this is the interesting bit), very often my resting heart rate (when I sit or lying down) is 50 or lower (!) at times and I know for a fact that it can go to as low as 38 during sleep (holter). I am writing this email now and my heart rate is 50!!! Who would believe that I have PoTS? Of course when I stand up, or after drinking stimulants like caffeine etc, my heart rate is restored to the usual 130s...I was wondering if any of you had this problem, and whether you could offer any explanations. The thing is that I feel dizzy when I stand up (probably because of the acceleration and the drop in BP), but also (!!!) I feel dizzy when I sit (maybe due to the bradycardia???)Yours views are welcome.All the BestAlex Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted November 21, 2003 Report Share Posted November 21, 2003 Yes, I have had bradycardia as well as tachycardia. When I wore a heart monitor my heart rate fluctuated from 46 to the 150's. (The 46 was when I was sleeping). I have heard similar stories from other patients.My neurologist said he wanted to keep my heart rate around 50 (with a beta blocker). I suppose this was so that when I stood up my heart rate would still be in the normal range?Did you ask Mathias about this?BTW, are you feeling better these days? Still in school? Michelle Quote Link to comment Share on other sites More sharing options...
Alexander Posted November 21, 2003 Author Report Share Posted November 21, 2003 Dear Michelle,Thank you for your response!!I am feeling slighly better than usual the past few weeks. No major improvements though..How about you?? How are you feeling?With regards to the sitting/lying bradycardia, the thing is that I do not take neither have I taken a beta blocker. This is because they make me feel awful!!!It looks like I have the partial dysautonomia rather than the hyperadrenergic kind of POTS. In fact, the only time I have taken a beta blocker was two years ago (one time) and at that point POTS came into my life.. It is no wonder why I hate them!!I would like to know whether my sitting dizziness is attributed to the bradycardia (because definately it is not the tachycardia tha makes me feel dizzy when I sit). Don't you think that a 50 sitting pulse rate is bit strange for a POTS patient who takes no beta blockers..I am afraid again that something really wrong is going on...At times, I don't know whether tachycardia or bradycardia makes me feel worse. One things is for sure. The thought of some doctor suggesting pace maker as treatment is not only petrifying but unwelcome..But...again, things sometimes have to get worse before they get better. All the BestA Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted November 21, 2003 Report Share Posted November 21, 2003 I am doing great and have been feeling really good for over a year. I still have POTS...of course...but my energy has returned and I can do so much more than before. I honestly feel better now than I have in all the years I've had POTS. I have had bradycardia off the beta blocker too. But you should talk to your doctor about this. Did your doctor really suggest a pacemaker? Often the heart is speeding up to try and keep the needed blood supply to the brain. Michelle Quote Link to comment Share on other sites More sharing options...
Alexander Posted November 21, 2003 Author Report Share Posted November 21, 2003 Dear Michelle,I am so glad that you are feeling better!!! I am so happy for you plus that it gives me strength to hope tha something similar migt happen to me. It appears that God is rewarding you for helping all of us who suffer from POTS by establishing this Foru, and the Pots Place of course. I wish you full recovery because surely PoTs is something You CAN do without...As regards the pacemaker, NO doctor has ever suggested it to me and I am prying that no doctor will. I was just saying loud some terrifying thoughts. Do you think that I might need one, or I am just a worrier (this time without any cause of concern).All the BestA. Quote Link to comment Share on other sites More sharing options...
Alexander Posted November 21, 2003 Author Report Share Posted November 21, 2003 Hi again Michelle,I am reading again your last reply and it got me worried. Do you think that my PoTs might be caused by my bradycardia because this is how I am interpreting your last statement...I am scared about the prospect but I have not investugated this, nor anyone suggested something like that thus far.. Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted November 22, 2003 Report Share Posted November 22, 2003 Hi Alexander,No, I was not suggesting the POTS was caused by bradycardia. I was just taken aback by the pacemaker comment...not a standard treatment for POTS. So don't worry.Michelle Quote Link to comment Share on other sites More sharing options...
ethansmom Posted November 22, 2003 Report Share Posted November 22, 2003 I too have had documented bradycardia episodes while laying down or sleeping- with and without the beta blockers. The first beta blocker that my doctor tried dropped my resting HR to 35 BPM- and let's just say I was feeling pretty awful at that time!! When I wake up in the morning, and I'm still in bed, my HR will stay around 60- but can get as high as 150 just from standing up (a feeling all too familiar for most of us). I recently stopped taking beta blockers altogether because of the awful fatigue they were causing, and I feel better now- although my lightheadedness is *always* present, it has much improved without the BB. I just wanted to share this info, because I found it interesting that you two had this problem as well!! Michelle- what have you done that you feel has significantly improved your symptoms? That is great that you are feeling so good. I feel that I had about a year of feeling great (from being pregnant) but I am falling into a rut lately, where all I want to do is lie down and I feel yucky pretty much all the time. It's hard to keep the motivation going... Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted November 23, 2003 Report Share Posted November 23, 2003 Hi Jessica!I wish there was something I could tell you I did to feel this good. I think my body just continues to heal from whatever it was that brought on full-blown POTS back in 1999. There have been bad times through the years, but never as bad as when I first was hit by all this. About a year and a half ago I was seriousy contemplating quitting my job. I would be sitting at my desk and feel so dizzy...like I was going to fall over. And now here I am feeling great. POTS is very unpredictable. I am much more in tune with my body now, and when I feel myself starting to crash I can take measures to (usually) prevent it. But the things that work for me will certainly not work for everyone, as we all seem to react to medications and such very differently. Hang in there, though! If I can get better -while having a gentic predisposition to this illness- you probably can too. Michelle Quote Link to comment Share on other sites More sharing options...
Alexander Posted November 23, 2003 Author Report Share Posted November 23, 2003 Hi there Michelle, Could I ask you what do you mean exactly when you are saying that you can usually prevent a crisis before itr happens. Do you do that pharmacologically (midodrine, florinef etc at the time of sumptoms in addition to the usual dose) or you just eat tones of salt and water to raise your blood pressure (or both?). Also when do you are talking about genetic predisposition do you mean ehlers danlos syndrome? Lastly, may I ask: Have you tried or will you ever try to stay completely off drugs? What do you think will happen if you do that? All the BestAlex Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted November 23, 2003 Report Share Posted November 23, 2003 Hi Alex!I do some simple things when I feel like I am starting to crash.... I drink pedialyte, take motrin, eat something with protein that is salty, put on compression stockings if I'm not wearing them, cool down if I'm overheating, etc. etc. I would have to say out of all those things the motrin probably helps the most. One research article I read speculated that it may help OI patients by blocking the blood pressure lowering effects of prostaglandins A doc friend of mine also said it can help to conserve water. Whatever it does, it really helps me. Yes, I meant EDS when I was talking about the genetic predisposition. A recent study showed that 78% of patients with Joint Hypermobility Syndrome had signs of dysautonomia. Yes, I have tried to quit the meds when I feel better...but then I start to feel worse. I feel so much better with that small dose beta blocker than without it. I think I will probably be on meds for the rest of my life, but ya never know Take care Alex,Michelle Quote Link to comment Share on other sites More sharing options...
justin Posted November 24, 2003 Report Share Posted November 24, 2003 i have had frequent -some documented- episodes of bradycardia, both on and off the beta blocker that i take (atenolol). the lowest it's been on a monitor was 42 bpm. when i was very ill last winter, i had almost constant resting bradycardia in the 40-49 bpm range, irrespective of my standing tachycardia. since i've been on the beta blocker, i've found my HR to be a bit more uniform--less extremes. the lowest my HR gets now is around 50, resting of course. upright is another story entirely. Quote Link to comment Share on other sites More sharing options...
ethansmom Posted November 24, 2003 Report Share Posted November 24, 2003 Michelle- thanks for the reply. I too have noticed that I feel better when taking Motrin, but I never could figure out why...I'll take it for a headache, or the achy mucles I get from the ANS problems, and I feel better all around =)Just out of curiousity, what meds/dosages are you taking? I started taking a beta blocker (200 mg daily) over the summer, and I have felt so much worse since I started it- so I quit taking it, and now I feel better, but my HR is so high that I tire easily and get short of breath, despite being on Florinef and Midodrine. I have often thought maybe a lower dose would help, so maybe it's worth bringing up with my doc...but Sectral is the only BB I have really tried for longer than a few days that seemed to help without causing my HR to drop too low. It's so great that you're feeling good these days, I hope I get there soon!! I won't quit till I do!! One more thing- do you drink Pedialyte because it has less sugar than Gatorade? Just curious, I have been looking for an electrolyte drink that is low in sugar. Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted November 24, 2003 Report Share Posted November 24, 2003 Hi Jessica!I only take 12.5mg toprol. Sometimes when I am having a bad day I will take more, but I can't take too much or it lowers my bp (which is already low). And I do drink pedialtye because it has less sugar. But you have to be careful about what brand you buy. Some of the off-brands taste absolutely gross. (Not that any of them taste good) I have found the regular pedialyte and the CVS brand electrolyte solution to be bearable. Hopefully you'll be able to find something to get your heart rate under control. I know it can be miserable, and I used to hate that out-of-breath feeling. Hang in there.Michelle Quote Link to comment Share on other sites More sharing options...
Timbo Posted November 25, 2003 Report Share Posted November 25, 2003 (edited) I have borderline bradycardia. Sometimes my pulse sits at around 60 and goes as low as 57. I also get tachycardia of 130 max on standing. But that only shows up occasionally. I do not take any heart drugs related to my POTS.I feel better than I did before POTS as well. I still have bad days where I don't, but exercising has helped a lot. Walking is the best exercise you can do. If you can push yourself and walk three miles, 5 days a week. I guarantee you that you will feel better within two months. Of course you should always check with your doctor before starting an exercise program of any kind. Edited November 25, 2003 by Timbo Quote Link to comment Share on other sites More sharing options...
Iheartfrogs217 Posted September 28, 2013 Report Share Posted September 28, 2013 Hi Alex! I, too do not take beta blockers, and I've been finding that I have a heart rate of 43 when I'm laying in bed. I'm assuming its just another POTS symptom but I'm not for sure. Im really afraid of greeting a pacemaker as well because I'm only 16! Please let me know what the doctors say about your bradycardia! I'm very curious as well. I hope you feel better! Thanks. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 28, 2013 Report Share Posted September 28, 2013 I think all of us have bradychardia at one time or another. It seams fairly usual for us. Quote Link to comment Share on other sites More sharing options...
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