Eraena Posted December 1, 2018 Report Share Posted December 1, 2018 I haven't decided to take my BP in all positions until now, and I've noticed that it's low in all positions. [Lying down]: Systolic 95-104/ Diastolic 54-60 [Sitting]: Systolic 80-105/ Diastolic 44-59 [Standing]: Systolic 93-105/ Diastolic 58-64 My resting HR is usually 53-65. Probably the reason why I feel lightheaded in all positions? I find that natural treatments and medicine isn't helping to raise the BP, or at least is not helping me feel less lightheaded and tired. I was diagnosed with POTS, but the doctor said it wasn't a definite diagnoses, and said that it could be something deeper. I don't go to the neurologist until January 22. I don't know if it is Dysautonomia, but something clearly doesn't feel right. I don't have a drop in BP on standing, and it seems everywhere it focuses more on orthostatic hypotension, rather than BP staying chronically low. I know you all can't diagnose me, but I don't know where to go next. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted December 1, 2018 Report Share Posted December 1, 2018 Stick with the neurologist. The HR change is what defines POTS. You could be normally that low or your blood volume could just be that low. Are you drinking lots of water and eating lots of salt? Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted December 1, 2018 Report Share Posted December 1, 2018 1 hour ago, Eraena said: I haven't decided to take my BP in all positions until now, and I've noticed that it's low in all positions. [Lying down]: Systolic 95-104/ Diastolic 54-60 [Sitting]: Systolic 80-105/ Diastolic 44-59 [Standing]: Systolic 93-105/ Diastolic 58-64 My resting HR is usually 53-65. Probably the reason why I feel lightheaded in all positions? I find that natural treatments and medicine isn't helping to raise the BP, or at least is not helping me feel less lightheaded and tired. I was diagnosed with POTS, but the doctor said it wasn't a definite diagnoses, and said that it could be something deeper. I don't go to the neurologist until January 22. I don't know if it is Dysautonomia, but something clearly doesn't feel right. I don't have a drop in BP on standing, and it seems everywhere it focuses more on orthostatic hypotension, rather than BP staying chronically low. I know you all can't diagnose me, but I don't know where to go next. I can't really give you any insight but my blood pressure is getting too low for my liking. But I'll get spikes that go way high. I'm pretty lost. I drank some coffee to boost my pressure up. Although I can't drink too much caffeine anymore or I'll feel really sick. I'm 31 now and relied on caffeine to help me through work through my 20s. Like 5 hour energy etc. My gf at the time was always mad at me for being tired all the time. So I guess I've been dealing with this longer than I thought. I'm just now having more major symptoms. I just started taking mestinon to slow the heart down which elevated my pressure to where I felt sick. So I was put on Lisinopril to counteract that. It seems the Lisinopril is cancelling out the mestinon because my heart rate is back to being in the 130 plus area when I'm standing up. When I took mestinon alone, it would go to about 110 or so. And my blood pressure is low now. So it seems like only the blood pressure medicine is working and I don't want it to go too low because I already have fainting episodes. So you are taking meds to raise your blood pressure and it's not working? Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted December 1, 2018 Report Share Posted December 1, 2018 6 minutes ago, StayAtHomeMom said: Stick with the neurologist. The HR change is what defines POTS. You could be normally that low or your blood volume could just be that low. Are you drinking lots of water and eating lots of salt? Hopefully they have a better experience than I did with the neurologist. He made me do simple tests like walk in a straight line. Talked to me for 2 mins and left. His doctor records said I was fainting probably due to anxiety. It was a joke. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted December 1, 2018 Report Share Posted December 1, 2018 2 minutes ago, Derek1987 said: Hopefully they have a better experience than I did with the neurologist. He made me do simple tests like walk in a straight line. Talked to me for 2 mins and left. His doctor records said I was fainting probably due to anxiety. It was a joke. My neurologist is my POTS specialist. He didn't even do the normal neurological exam. Went straight into what tests have you had done and ordered retests and new tests. I wasn't so sure of him at first because he spend so little time with me but since seeing him my life has definitely improved. Quote Link to comment Share on other sites More sharing options...
Eraena Posted December 1, 2018 Author Report Share Posted December 1, 2018 11 minutes ago, StayAtHomeMom said: Stick with the neurologist. The HR change is what defines POTS. You could be normally that low or your blood volume could just be that low. Are you drinking lots of water and eating lots of salt? I went to the doctor last year and my BP was 88/60, but felt completely fine. I'm drinking 80-100oz, and adding salt to things that already have salt. I had soup that had 1,550mg of sodium and I added 1/2 of salt (around 1,000mg). I'm also wearing compression stockings and taking Midodrine. Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted December 1, 2018 Report Share Posted December 1, 2018 17 minutes ago, StayAtHomeMom said: My neurologist is my POTS specialist. He didn't even do the normal neurological exam. Went straight into what tests have you had done and ordered retests and new tests. I wasn't so sure of him at first because he spend so little time with me but since seeing him my life has definitely improved. That's a blessing for sure. Quote Link to comment Share on other sites More sharing options...
Pistol Posted December 1, 2018 Report Share Posted December 1, 2018 @Eraena - your BP that you posted seems pretty stable. Some people ( including myself ) just have a naturally low BP and function well on it. Before having hyperPOTS my BP was always 90/50-ish and I felt great. I mind any increase in BP, since my POTS is controlled my BP runs low ( even as low as 80/48 )and I have no symptoms. Do you get dizzy when you stand up? Does your HR go up upon standing? If you have POTS your HR will go up without a drop in BP, regardless of wether it is high orlow. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted December 1, 2018 Report Share Posted December 1, 2018 I hope you find answers, and share them here... I don't really fit any diagnosis (about 10 doctors into this and have done every test imaginable, sometimes more than once) and just have chronically low BP after being HYPERtensive for many years. My BP doesn't change too much with position either. My heart rate also doesn't change very much, it's just fast 24/7 other than shooting up with activity(not standing) but now controlled by metoprolol. I do not function well at all and am basically in some degree of shock all the time, collapsing or passing out too often. Without meds I'd guess my BP would be about 70/30 now. I'm on midodrine, mestinon, florinef, 15gm salt per day, 4L water (usually consumed as a homemade oral rehydration drink) and IV fluids and generally run near 84/60 on all of that. In my teens I was 150/90 and really nothing in my life has changed. My diet, weight, environment are the same. I was very active in many athletic activities but still keep trying to do so. Good luck! Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted December 1, 2018 Report Share Posted December 1, 2018 10 hours ago, Eraena said: I went to the doctor last year and my BP was 88/60, but felt completely fine. I'm drinking 80-100oz, and adding salt to things that already have salt. I had soup that had 1,550mg of sodium and I added 1/2 of salt (around 1,000mg). I'm also wearing compression stockings and taking Midodrine. I think your BP just runs low. Some people are that way. What is your HR rate numbers? Quote Link to comment Share on other sites More sharing options...
Eraena Posted December 2, 2018 Author Report Share Posted December 2, 2018 On 12/1/2018 at 5:35 AM, Pistol said: @Eraena - your BP that you posted seems pretty stable. Some people ( including myself ) just have a naturally low BP and function well on it. Before having hyperPOTS my BP was always 90/50-ish and I felt great. I mind any increase in BP, since my POTS is controlled my BP runs low ( even as low as 80/48 )and I have no symptoms. Do you get dizzy when you stand up? Does your HR go up upon standing? If you have POTS your HR will go up without a drop in BP, regardless of wether it is high orlow. I rarely feel lightheaded on standing. It's rather I feel lightheaded every few seconds. My HR does go up. I've noticed the longer I stand, the more my heart palpitates, also along with chest tightness and shortness of breath. On 12/1/2018 at 8:08 AM, StayAtHomeMom said: I think your BP just runs low. Some people are that way. What is your HR rate numbers? Then, it is normal even though I can't really function? My resting HR is between 53-65. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted December 2, 2018 Report Share Posted December 2, 2018 Have you tried any medication to help? I remember when I first got sick and I was constant dizzy for about 2 months. Couldn't even drive at one point it was so bad. My pulmonologist suggested a 1/2 pill of dramimine (the motion sickness medicine) and that drastically helped. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted December 2, 2018 Report Share Posted December 2, 2018 I use to have low BP all the time if would drop even further on standing and I would faint . I use to feel lightheaded even sitting along with other symptons, I just couldn't function. Midodrine has stabilised my BP on the whole. I have VVS and POTS. It's hard to know which is causing which symptons but in truth both of them are treated in a simliar way . If you have symptons I would try to get some answers , Beat wishes x Quote Link to comment Share on other sites More sharing options...
yogini Posted December 2, 2018 Report Share Posted December 2, 2018 A normal BP is considered to be anywhere in the range between 90/60 to 120/80. Your doctor can advise best, but It seems your BP is on the low end of the normal range. I think most doctors would not be concerned with this. I had 90/60 BP all my life before getting dysautonomia and many of my friends and family have this BP and they don't have dysautonomia. With dysautonomia there is a wide swing in HR and/or BP between lying and standing up. Quote Link to comment Share on other sites More sharing options...
jinglebean Posted December 10, 2018 Report Share Posted December 10, 2018 Hi. new. I have the same thing. Low BP all the time, even with salt, 3-4L water per day, compression stockings. I'm also light-headed a lot of the time. I noticed my BP goes down after I eat, and that's usually when I start to feel worse. It started for me after a concussion/moderate TBI early last year. Before that I had gastroparesis, and would feel crappy and tired after I ate, but I never checked my BP. Then after the concussion, it got 100x worse. It is so bad that I thought I was concussed for the past year, my doctors didn't know why it wasn't going away. But after I did a fast for a 3 days, around a month ago, because I noticed I felt worse on days where my gastroparesis was flaring, I felt FINE. Like my old self again. So now I try not to eat until later in the day, so at least I have some dizzy-free time in the day. I think it's postprandial hypotension from dysautonomia from my concussion, but my dr isn't sure. She says she doesn't know enough about it to say either way. So now I'm looking into specialists she can send me to. Oh man that was long. Anyhow, I think we have similar symptoms. Let's keep each other posted about what happens. Also wondering, do you feel worse after you eat? Have you noticed it's worse with certain types of foods? Anything that affects it? Quote Link to comment Share on other sites More sharing options...
MikeO Posted August 17, 2021 Report Share Posted August 17, 2021 On 11/30/2018 at 9:33 PM, Derek1987 said: I just started taking mestinon to slow the heart down which elevated my pressure to where I felt sick. So I was put on Lisinopril to counteract that. It seems the Lisinopril is cancelling out the mestinon because my heart rate is back to being in the 130 plus area when I'm standing up. When I took mestinon alone, it would go to about 110 or so. And my blood pressure is low now. So it seems like only the blood pressure medicine is working and I don't want it to go too low because I already have fainting episodes. I have had issues with Lisinopril causing higher heart rates (thought i had super secret POTs at one point) was to the point i could not even move without palpitating all over the place. 20mg will definitely bring down the BP but, for me was way too much so i am now OFFICIALLY banned from it. IMO Lisinopril is a nasty little drug for some folks. I am now only taking a beta-blocker and mestinon (pyridostigmine) HR's have been good so far, my low BP's are under control for the most part (not perfect) downside is i have issues with high BP spikes so we are working on that. Quote Link to comment Share on other sites More sharing options...
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