PetuniasMom Posted June 15, 2011 Report Share Posted June 15, 2011 So as we bump along waiting for her autonomic testing appointment, I have a few questions not for the doctors, but for you all... 1. True or False - POTS really has little to do with blood pressure...meaning your bp doesn't have to drop upon standing for a diagnosis of POTS.2. Does your heart rate increase on standing by 30 bpm every single time? Does this increase need to be sustained for a certain length of time to be POTS?3. Does your heart rate increase when you eat? By alot?4. Do you have times where you feel your heart rate is normal, bp is normal, but you feel AWFUL...like can't put it into words AWFUL5. Is it insomnia for some reason, or do you just feel so sick that you can't sleep?6. Is it true that the GI pain could be caused by different things - motility issues, blood pooling in the stomach area, or lack of blood to satisfy the digestive process??8. Tachycardia - how high is too high?*sigh* I think thats it. I hope its okay to put my questions out like that. I know they are questions for the doctor doing her testing, but I just need to get my head around a few things and be organized before that appointment. Thank you all for any answers... Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 15, 2011 Report Share Posted June 15, 2011 I'll tell you how it correlates to me and what I've learned along the way:1. POTS is defined as having an increased heart rate of 30 bpm upon standing, I think for 10 minutes. I wouldn't worry too much if it happened at, say, 13 minutes, as the end product is the same. My b/p rises way up there upon standing, from like 111/70 to 180/110 during the TTT.2. I don't stand long enough to actually count and test my rate, but sitting it is normally around 80. After my shower and getting dressed, I am around 110. That's all in about 10 minutes.3. I do not get an increased heart rate with eating.4. Definitely get times where I feel awful, and vital signs all look good(sitting, of course!).5. I have had insomnia for a long time, way before POTS. I just never get sleepy, never. I am always tired because I never get sleepy! 6. I have huge issues with gi bloating that is lessened if I keep my bowels moving really well. If I skip a day or get in any way constipated, I have breathing issues with the pressure.7. I honestly don't know what is too high regarding the heart rate.Yes, we can read all we want in a book about POTS, but having the first-hand accounts is truly priceless! Quote Link to comment Share on other sites More sharing options...
yuliya Posted June 15, 2011 Report Share Posted June 15, 2011 1. your blood pressure does not need to rise or fall to diagnose POTS. My blood pressure stay relatively the same.2. My pulse goes up a lot of times but not every time. I have good days and bad days.3. I have not noticed any difference after eating again. again there are days that my pulse races all day and others when it somewhat normal. 4. Yes. I have days of dizziness and feel horrible but it doesn't show on measuring stats.5. I have insomnia and take medicen for it. I attribute it to adrenaline surges and palpitation. 6. GI issues can be caused by a lot of different things, and some people with POTS have no issues with GI.7. Tachycardia over 200 would probably be considered worrisome and on top of that it would matter on the kind of tachycardia.hope that helps, just going off my own symptoms not an expert at all. Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted June 15, 2011 Report Share Posted June 15, 2011 1. True or False - POTS really has little to do with blood pressure...meaning your bp doesn't have to drop upon standing for a diagnosis of POTS.True. My bp goes up when standing. It always goes high and low. It used to be VERY high. Thankfully it is usually normal and good now. 2. Does your heart rate increase on standing by 30 bpm every single time? Does this increase need to be sustained for a certain length of time to be POTS?It gets higher when I stand and walk for sure. I sit at 120 or less so I don't know how much higher it would go. I keep track with my heart rate watch. 3. Does your heart rate increase when you eat? By alot? I don't think my h.rate goes up a lot when I eat.4. Do you have times where you feel your heart rate is normal, bp is normal, but you feel AWFUL...like can't put it into words AWFULYes, hrate and bp can be ok and I can still feel awful. 5. Is it insomnia for some reason, or do you just feel so sick that you can't sleep?I am lucky, I have no problems sleeping now that I am doing better.6. Is it true that the GI pain could be caused by different things - motility issues, blood pooling in the stomach area, or lack of blood to satisfy the digestive process??Yes, I used to get bloated and nausea when eating, now I am doing fine with eating. 8. Tachycardia - how high is too high? I really don't know what is really too high. Mine is better now and I always lie down and sit if it gets high. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted June 15, 2011 Report Share Posted June 15, 2011 1. True or False - POTS really has little to do with blood pressure...meaning your bp doesn't have to drop upon standing for a diagnosis of POTS.True. It's called orthostatic hypotension when BP drops with standing. Mine goes up, down, or stays somewhat the same.2. Does your heart rate increase on standing by 30 bpm every single time? Does this increase need to be sustained for a certain length of time to be POTS?Mine does increase by 30 bpm or more most times unless I've taken a lot of midodrine and fluids.3. Does your heart rate increase when you eat? By alot?YES, and I'm more symptomatic and tired.4. Do you have times where you feel your heart rate is normal, bp is normal, but you feel AWFUL...like can't put it into words AWFUL. Sometimes. I trust how I feel in addition to what the numbers say on the BP monitor.5. Is it insomnia for some reason, or do you just feel so sick that you can't sleep?Both6. Is it true that the GI pain could be caused by different things - motility issues, blood pooling in the stomach area, or lack of blood to satisfy the digestive process??Elevated adrenaline levels divert blood from our gut and can cause slow or ineffective peristalsis. That is what happens in my case. It's very painful.8. Tachycardia - how high is too high? For me I don't get extremely tachy but my pulse pressure narrows and diastolic BP goes up. I feel worst when my diastolic BP is over 100. With better meds and lifestyle management, that doesn't happen too much. Quote Link to comment Share on other sites More sharing options...
louloutinks Posted June 15, 2011 Report Share Posted June 15, 2011 1. True or False - POTS really has little to do with blood pressure...meaning your bp doesn't have to drop upon standing for a diagnosis of POTS.If BP goes up on standing it is orthostatic HYPERtension - if it drops a lot, it is orthostatic HYPOtension.MIne tends to go up on standing2. Does your heart rate increase on standing by 30 bpm every single time? Does this increase need to be sustained for a certain length of time to be POTS?My heart rate goes up by 25 to 70 on standing. I use a heart rate monitor and it shows (usually) the longer I stand, the faster my heart goes. I have also read it goes up by 30bpm OR over 130 for Pots3. Does your heart rate increase when you eat? By alot?I know my BP drops a lot when I eat carbs and get very tired4. Do you have times where you feel your heart rate is normal, bp is normal, but you feel AWFUL...like can't put it into words AWFULOften. Some days/weeks are more 'POTSY' than others - not sure if other people are like this too?5. Is it insomnia for some reason, or do you just feel so sick that you can't sleep?Always had poor sleep - as someone else said - am always tired but not sleepy6. Is it true that the GI pain could be caused by different things - motility issues, blood pooling in the stomach area, or lack of blood to satisfy the digestive process??they think my constipation is to do with ANS dysfunction - waited for ages to be seen by specialist8. Tachycardia - how high is too high?Not sure how high is too high but doing the simplest of things can make mine race to 130/40. Whilst shopping mine was 219. My HR is terrible in the mornings especially - get very dizzy,tachy and breathless in am. When son goes to school, I have to relax for a while before I can function properly.Good luck with the app with doc!!Good to see others answers on here too! Quote Link to comment Share on other sites More sharing options...
Simmy Posted June 15, 2011 Report Share Posted June 15, 2011 1. True or False - POTS really has little to do with blood pressure...meaning your bp doesn't have to drop upon standing for a diagnosis of POTS. True. While most do experience BP changes, it is the increase in HR that counts.2. Does your heart rate increase on standing by 30 bpm every single time? Does this increase need to be sustained for a certain length of time to be POTS? Mine does, but it need not to qualify – an increase of 28bpm+ due to change in posture after any period of time less than 10 minutes qualifies.3. Does your heart rate increase when you eat? By alot? Yes, but not by a lot, maybe only 10bpm directly attributed to digestion, but it sure does wipe me out.4. Do you have times where you feel your heart rate is normal, bp is normal, but you feel AWFUL...like can't put it into words AWFUL? Yes. I’m convinced that while your blood pressure may read normal as measured on your arm, it may not necessarily be stable all over the body – I suspect cerebral blood flow may be diminished even while BP readings show normal.5. Is it insomnia for some reason, or do you just feel so sick that you can't sleep? Hard to put my finger on that one. Just an overall uncomfortableness that makes me toss and turn throughout the night. 6. Is it true that the GI pain could be caused by different things - motility issues, blood pooling in the stomach area, or lack of blood to satisfy the digestive process?? Makes sense.8. Tachycardia - how high is too high? I have two different “too high” numbers. The number I would say to never exceed would be your Maximum Heart Rate (220 minus your age). I also try to avoid sustaining a heart rate that will exhaust me – basically, 120bpm+ for more than a few minutes at a time. Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted June 15, 2011 Report Share Posted June 15, 2011 1. Yes, My BP can be low and high. But I have been also diagnosed with adrenergic autonomic polyneuropathy and cholinergic autonomic neuropathy2. Yes My HR increases every single time, but sometimes it is right away and sometimes it is like 10-15 min. later. But it also happens when I sit up.3. I have noticed my HR increases when I eat, but what is really bothersome for me is that sometimes the food or drink just won't go down. It gets kinda stuck & then of course my HR raises because I am worried about it. Sometimes as the food moves down to my stomach it hurts my chest. 4. Yes, but I have noticed that during these times the BP is very narrow. Like 84/79.5. I feel like I'm tired but wired...if that makes sense. It is not usually because I feel awful, but sometimes my Heart is racing as well??? Other times I can sleep for 18 hours straight and probably still sleep more.6. I had my Gall Bladder out and that seemed to help with some of the pain...but I have had pain for probably 20 years. Oddly it has gotten a lot better since I have been put on the Bystolic.8. I do not know the answer to this question, but generally my Doc has advised me that if it stays over 145 for too long after Meds., I need to go to the ER. Needless to say I try everything possible to get it down Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted June 15, 2011 Report Share Posted June 15, 2011 1. True or False - POTS really has little to do with blood pressure...meaning your bp doesn't have to drop upon standing for a diagnosis of POTS. This is correct2. Does your heart rate increase on standing by 30 bpm every single time? Does this increase need to be sustained for a certain length of time to be POTS? variable day to day, AM to PM; however it is a change of 30 bpm or more from prone to standing that diagnoses POTS3. Does your heart rate increase when you eat? By alot? It used to and at times still. By 20 bpm or more when I was quite sick.4. Do you have times where you feel your heart rate is normal, bp is normal, but you feel AWFUL...like can't put it into words AWFUL YES5. Is it insomnia for some reason, or do you just feel so sick that you can't sleep? Mainly insomnia for me. I think for me due to adrenaline surges it was hard to relax at times when I was very sick.6. Is it true that the GI pain could be caused by different things - motility issues, blood pooling in the stomach area, or lack of blood to satisfy the digestive process?? I have not had GI involvement and don't know anything about this. Imagine there could be varying causes. 8. Tachycardia - how high is too high? Agree w others on maximum heart rate. I think this would be a question for the dr. I was never told anything by a dr on this. Quote Link to comment Share on other sites More sharing options...
misstraci Posted June 15, 2011 Report Share Posted June 15, 2011 I know everyone is giving there own experience and knowledge to your questions so, I will too. I wish I had answers for you that I could back up with medical findings, etc.1. True or False - POTS really has little to do with blood pressure...meaning your bp doesn't have to drop upon standing for a diagnosis of POTS.It is true that POTS has little to do with blood pressure, meaning, you can still have POTS and not low blood pressure. You can have POTS and have normal and high blood pressure as well.2. Does your heart rate increase on standing by 30 bpm every single time? Does this increase need to be sustained for a certain length of time to be POTS?Every time is different, so, no not necessarily by 30 each time and I'm not certain about the length of time part.3. Does your heart rate increase when you eat? By alot?I've never measured my HR while eating or right after eating, however, if I don't eat or drink consistantly, my heart rate will be elevated. the other day (sitting) I was averaging a HR of 100 and then I drank some more and ate a snack and it went back down a little.4. Do you have times where you feel your heart rate is normal, bp is normal, but you feel AWFUL...like can't put it into words AWFULYES, words can not give meaning or description to how deathly ill I feel at times, yet, my vitals look perfect for example almost everytime I go to the emergency room..... go figure, if your vitals and bloodwork look half way decent, they send you on your way and let someone else deal with you. so annoying.5. Is it insomnia for some reason, or do you just feel so sick that you can't sleep?I'm not sure.6. Is it true that the GI pain could be caused by different things - motility issues, blood pooling in the stomach area, or lack of blood to satisfy the digestive process??Yes!!8. Tachycardia - how high is too high?I don't know the technical answer but I would think it depends on teh person and their age and body make up. I am 27, 110lbs and my taarget HR is about 130 (i think) and I think if I were to go higher than that it could potentially be dangerous for me personally. But if a male, 200lbs, his ranges are different and same thing for a child and adolescents tend to be more elevated to begin with. Quote Link to comment Share on other sites More sharing options...
DIXZELAND Posted June 15, 2011 Report Share Posted June 15, 2011 So as we bump along waiting for her autonomic testing appointment, I have a few questions not for the doctors, but for you all... 1. True or False - POTS really has little to do with blood pressure...meaning your bp doesn't have to drop upon standing for a diagnosis of POTS.2. Does your heart rate increase on standing by 30 bpm every single time? Does this increase need to be sustained for a certain length of time to be POTS?3. Does your heart rate increase when you eat? By alot?4. Do you have times where you feel your heart rate is normal, bp is normal, but you feel AWFUL...like can't put it into words AWFUL5. Is it insomnia for some reason, or do you just feel so sick that you can't sleep?6. Is it true that the GI pain could be caused by different things - motility issues, blood pooling in the stomach area, or lack of blood to satisfy the digestive process??8. Tachycardia - how high is too high?*sigh* I think thats it. I hope its okay to put my questions out like that. I know they are questions for the doctor doing her testing, but I just need to get my head around a few things and be organized before that appointment. Thank you all for any answers...I have had POTS for 18 months. Suddenly appeared out of know where. I have all the symptoms above except my bp never got low. It was always very high along with a high heart rate. I have Osteoporosis at age 44. I went to see a new Endocrinologist because I wasn't able to strenthen my bones through meds and injections. My new doctor tested my Calcium, which I told him was always out of range "high", but no one seemed concerned. He test my calcium along with a PTh which is Parathyroid Hormone. And low and behold, it was high as well..I have Hyperparathyroid disease. If you read about this, it has all the symptoms as you described as above. I am not saying that everyone has POTS has this other disease, I am just saying that this is what is causing my POTS. I am going to meet with a surgeon in July to discuss removing my parathyroid gland(s), which ever one has the tumor growing on it. My POTS doctor said this indeed could be the culprit to causing all my POTS symptoms!!!Just thought I'd share, it might help someone else. Parathyroid disease is uncommon and surgery is the only fix. Parathyroid.com is the website. Quote Link to comment Share on other sites More sharing options...
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