Gatorlily Posted June 10, 2015 Report Share Posted June 10, 2015 Hi, I'm new to the forum. I have been diagnosed with POTS for about a month now. My doctors know nothing about POTS, so I am pretty much on my own until I can find a better doctor. It seems like the top doctors that treat POTS have ridiculously long wait lists. So until I can actually see a doctor, maybe I can get some answers and/or reassurance from this community. I have done quite a bit of research on the illness, but I am still confused by some of my symptoms. I initially got diagnosed with an arrhythmia after a 24 hr holter monitor. I was prescribed metoprolol (12.5 2x day). The side effects were horrible and it lowered my bp too much. I was pretty much dizzy and fatigued all day. Also, an arrhythmia wasn't making sense to me given how I was feeling. So, I asked for a tilt table test and that's when I was diagnosed. My resting hr was 65, standing 100, after 10 min 180. My hr increased 20 pts(systolic) after 10 min as well. But my bp is low the rest of the time. I was then switched to pindolol bc that's not supposed to lower my bp as much. Wow, what a bad idea that was, the drug was actually given me tremors and the adrenaline feeling that I often experience. So now I am off all medication and im going to try acupuncture. I am also loading up on salt, fluids and slowly trying to get back into an exercise routine. The thing I am struggling with these days is my racing heart before I fall asleep. I don't understand why my heart pounds and races while supine. Does that happen to anyone else? Also if anyone has any input about my bp increasing during the tilt table test, but it being low the rest of the day. I've read about hyperadrenergic pots, but it seems like someone with that subset tends to have higher bp throughout the day. I would appreciate any comments/suggestions anyone has for me. Thanks! Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 10, 2015 Report Share Posted June 10, 2015 I can't say for sure that this is what's causing your issues, but many of us experience dysregulated adrenaline. Often when I lay down I will feel the adrenaline spikes popping off and then my heart rate increases. It can be very frustrating. One of my docs suggested I talk to my cardio or POTS neuro about trying clonidine at night to quiet this issue. I haven't actually had a chance to have that discussion yet but I've heard other members say they've had success with this. Oddly enough, sometimes if I drink a small amount of 1/2 caffeine coffee (maybe 4 oz.), it will help me sleep. I can only think that it is enough stimulant to quiet my body's own feedback loop. I am not saying this will help others as it is counterintuitive and many POTS people can't handle caffeine at all. It's just something I stumbled upon that works for me (sometimes.) Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted June 10, 2015 Report Share Posted June 10, 2015 This was and still can be a bothersome symptom for me. I do take a low dose beta blocker but I think it only helps take a slight edge off. I find keeping well hydrated and not eating a large amount prior to going to bed helps. Also avoiding sugar has helped me. It also helped me (somewhat) in the past to use breathing exercises that I discovered in Dr. Weil's book Spontaneous Healing. I also tried biofeedback and found limited success from that. All of us are different tho, it seems! Welcome to the forum and hope you will start to feel better soon. Quote Link to comment Share on other sites More sharing options...
Gatorlily Posted June 10, 2015 Author Report Share Posted June 10, 2015 Thanks, Katybug and Momtogiuliana! I can't wait to try the coffee suggestion! Although, it does seem counterintuitive, I can also see why it might work. I will also look into Dr. Weil's book. Quote Link to comment Share on other sites More sharing options...
Nymph Posted June 10, 2015 Report Share Posted June 10, 2015 Welcome! I am also fairly new to this. I would add to your hydration and salt compression hose and/or abdominal compression. They really help me. However, my bp never goes up, so it may or may not work for you.I have also had the racing heart at night a number of times. It's a horrible feeling. At times for me it has occurred after I drank some alchohol. I can usually handle a very small drink on occasion before bedtime. Maybe I was not well enough hydrated? I don't know. Does this happen to you all the time, or just sometimes? You could keep a journal of possible factors to see if anything contributes. I now keep some GU electrolyte packets in my bedside table to have with water if I have an episode. I think it helps. Quote Link to comment Share on other sites More sharing options...
Becia Posted June 11, 2015 Report Share Posted June 11, 2015 Mine does this, sometime in regard to medications (Benadryl and pain medication makes mine race), sometimes in regard to my hydration (and I will usually run one of my IV treatments overnight if this seems to be the case), and in regards to general ill feeling. No for sure ways to get it to stop, usually just have to ride it out, up hydration, the basics. Quote Link to comment Share on other sites More sharing options...
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