Willis Posted March 2, 2013 Report Share Posted March 2, 2013 Hi,I am currently being worked up for dysautonomia. I do not get tachycardia upon standing, only during exercise so they have ruled out classis POTS. So far my test results have shown a few things. After wearing a holter they found my heart rate gets in the low 40s at night and up to 190 during exercise, this is after sticking to a strict exercise program for 7 months. My exercise test came back ok (other than the HR) accept for a blunted blood pressure response to exercise. I used to be a competitive runner, but if I try to exercise I am short of breath, sweat profusely and get weak and nauseous. Also my laying to standing norepinephrine was 237-717. Does any of this sound familiar to anyone? I am most symptomatic after I drink my morning coffee, even with added protein and again in the late afternoon. This all started almost two years ago. I would have severe disabling symptoms for several hours and then they would disapate and disapear by late evening. Now the symptoms are not as severe, but can be more constant.I have other issues going on that point to a more systemic problem, but this is a piece of that puzzle. Thanks! Quote Link to comment Share on other sites More sharing options...
SeattleRain Posted March 3, 2013 Report Share Posted March 3, 2013 What is your target heart rate supposed to be for your age/height/weight? For my stress echo my target heart rate was 185bpm. How strenuous does exercise have to be for you to get your HR up to that? You have an interesting story and I'll be curious to know what they find out and what other tests they do... keep us updated! Quote Link to comment Share on other sites More sharing options...
corina Posted March 3, 2013 Report Share Posted March 3, 2013 Hi Willis, welcome to the forum! There are lots of knowledgeable people around here who might be able to answer your questions. Hope you will find the missing pieces of your puzzle! Quote Link to comment Share on other sites More sharing options...
bustersacc11 Posted March 3, 2013 Report Share Posted March 3, 2013 You mentioned a systemic problem. Do your doctors think the systemic problem may be causing your possible dysautonomia symptoms?I agree with SeattleRain about what is your target HR. If you were completing a cardiac stress test and on the treadmill, for example 15min, and got your max HR up to 190 (approp for age, etc) then I was assume you are still in pretty good shape.I have high norepi levels. Even though I can reach my target HR with exercise, I have to be careful sometimes with how strenuous my activity is. I can have an over-shoot of adrenaline and my HR will sky rocket. Not a good feeling and is scary sometimes. I don’t know if that is what happen.Also, when you drink coffee you become symptomatic. I am sure results will vary based on who you ask. If you feel that right now you are on the hyper side of things, maybe you are sensitive to caffeine (stimulants). By drinking coffee you are opening up the adrenaline flood gates and it is making you feel worse. Dysautonomia is a roller coaster ride. Provides me with hours or a day of feeling OK or the opposite. It waxes and wanes. To being constant. Yes, pieces of what you mention sound familiar. Please understand that by no means am I saying that you have dysautonomia. From your note, you are being worked up, which is great. Once you have all your data, plus your subjective piece I hope you find anwers.Are you able to get to a doctor and facility that is experienced with dysautonomia cases and testing? Quote Link to comment Share on other sites More sharing options...
Willis Posted March 3, 2013 Author Report Share Posted March 3, 2013 Thanks for responding! I have been a competitive runner for over 10 years and ran a 4-mile in September despite it taking 7 months to get there. I used to be able to run 7-8 minute miles at a lower heart rate and for much longer than I can now do 11-12 minute miles. I have been through some dysautonomia testing with mixed results. I have passed the tilt table, but was having a good week with my symptoms. I know I do not have POTS because I know where my heart rate is at when I am standing and it is not significantly higer and my symptoms don't resolve when I lay down. Are there specific tests for hyperadrenergic issues. I feel like I also overshoot, but I don't know what test results would look like for that. My thermoregulatory test came back normal, but I know that they look for a lack of sweating and my normal pattern is to not sweat for awhile, get really hot, and then sweat profusely. So by the end of the 45 minutes I was soaked and there were no areas that did not sweat. I have other issues going on so they have not been able to just focus on dysautonomia. Quote Link to comment Share on other sites More sharing options...
Willis Posted March 3, 2013 Author Report Share Posted March 3, 2013 Does anyone know if 717 is considered a high norepinephrine level. I was not real symptomatic during the blood draw. I am assuming norepinephrine levels would be higher the worse you feel.Thanks! Quote Link to comment Share on other sites More sharing options...
Joann Posted March 3, 2013 Report Share Posted March 3, 2013 I believe 717 is considered high. Mine was just under 800 and it was considered high, and because of symptoms they first considered a pheo tumor. But usually with those your levels go even higher, like double or triple the amount. I have been told I have POTS and possible hyper, but I am still going through testing. One of the doctors said he want to check some other autonomic issues also.So yes, your increase from sitting from standing is a possible symptoms of it. Quote Link to comment Share on other sites More sharing options...
issie Posted March 3, 2013 Report Share Posted March 3, 2013 Does anyone know if 717 is considered a high norepinephrine level. I was not real symptomatic during the blood draw. I am assuming norepinephrine levels would be higher the worse you feel.Thanks!Mayo considers any raise above 600 as high.Issie Quote Link to comment Share on other sites More sharing options...
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