KittyMama

I hate it when I tell people I have low blood pressure and they say "That sounds great! I wish I had that." (They want to be able to salt their food the way I do, I guess.)

Hi everyone, So I went to the doctor a couple of weeks ago (for an unrelated thing) and when they took my blood pressure it was... drumroll... 120/90 ! This was kind of shocking to me as my bp is normally around 90/60. On a really good day it might reach 110/70. But 120/90? that's the highest it's been in my adult life. And then I realized that I actually haven't had too many symptoms lately. Sometimes when I'm standing I start to feel faint, and then the feeling passes and I can keep standing. I don't really know what to make of this. Maybe it's just some kind of normal fluctuation, and in a month or two I'll start having problems again. I really don't know. But I got a light box recently to help with an abnormal sleep cycle (I tend to fall asleep in the morning and sleep until the afternoon), and I think I started feeling better after I'd been using it for a few weeks. It does help my sleep quality and hours a lot. I know this might not help anyone, and I could also be totally wrong about it being the reason that I'm feeling better lately. But I thought I'd let you all know, since if it does help someone that would be nice.

Hi everyone, I have some experience that I think might be useful / interesting to people reading this topic. I have PCOS (polycystic ovary syndrome), which as far as I know is completely unrelated to my Dysautonomia. For years I took spironolactone in a very high dosage for PCOS. For a long time it didn't bother me, but over the years my POTS/NCS (which were there before I took spiro) got a lot worse. Eventually it occurred to me that taking a diuretic might not be the best idea with this type of illness, and I stopped taking it. I experienced a huge improvement. Several times I tried going back on it at a low dose, but I always felt better without it than with it. Recently I tried it again for just a few days, and it made me so exhausted and ill that it took me weeks to recover. (I took it for probably 5-6 days on a low dose, and was sick for weeks after i stopped.) Also... something important for guys to know: it's an anti-androgen, which means it might do things to you that are less than pleasant (like breast enlargement). It worked really well for my PCOS (which causes high testosterone among other things), so if I were a guy I'd be cautious with it. Just my experience... I'm not telling anyone not to try it, but I would definitely be careful and go slow if I were going to try it again.

thanks Dave - I appreciate that.

hi everyone, sorry, I got distracted and didn't reply as soon as I meant to. andybonse - actually that's not true with diastolic heart failure, which is part of why I was thinking about it. davecom - that's actually pretty reassuring, because I did have a lingering cough from a viral infection when I went in for the test. Hopefully that's all it was. As for the results being only a little below normal... I looked again at my results and although that's true for stroke volume and cardiac output, my cardiac index was 2.1 (normal is supposed to be 2.8-4.2). That measurement is a little weird though because it's based on calculated body surface area, and I wouldn't be surprised if that makes it less accurate. ashleypooh - I'm moving to a new country in a week (!), so soon enough I will have to find a new doctor. I will be relieved if another doctor says it's nothing to worry about. about exercise, which a lot of people mentioned - it's really confusing to me. When I was a senior in high school I exercised 5-7 days a week for 30-45 minutes on an exercise bike. I pushed myself hard and was always sweaty and red-faced at the end of it. Then late in the year I was in a "walking" class (P.E.) - we just dressed in our gym uniforms and walked around town as a group. It was REALLY hard for me to keep up with the group and I was always out of breath when no one else was. It makes me wonder now - was it difficult for me because it was a standing-up exercise? I really don't know... but I still can't walk the way other people can even when I'm feeling good. Back at this time, which was before I really got sick (though I already had the hint of a fainting tendency), my resting heart rate was 60. I did a demonstration in health class once when I was totally sedentary (sophomore year) and even had a standing heart rate of 60. Then years later, after I had suddenly gotten sick and had everything get 1000 times worse, my resting heart rate climbed up to about 80. I'm wondering if this might have been a response to my stroke volume, etc. getting lower, because apparently the first thing your body does when your heart gets inefficient is to make it beat faster. But here's the problem: I was more active at that time than at any other time in my life, probably. I had a job that required me to stand and move around and walk up and down stairs. I didn't have a car so I walked and biked everywhere I needed to go. And I went running every day! So... since I do have exercise intolerance now and there are a lot of varying opinions about Levine's conclusions... I hesitate to exercise, wondering if exercise actually damages my heart. But at the same time I don't want to make things worse by not exercising either... it's really confusing and I don't know who I could ask about it who might be well-informed about this particular problem. (it seems like most doctors are of the opinion that exercise is always a great thing for everyone, which I know isn't true.) I know this isn't a problem you guys can solve for me... probably no one can except maybe some of the "famous" doctors, if I ever get the chance to see one. but anyway, thanks to all for responding!

Hi everyone, I recently ordered a copy of my medical test results. Earlier this year I had a cardiac ultrasound (echocardiogram) and it said that my stroke volume, cardiac output, and cardiac index were all too low. I don't have the results in front of me at the moment, but as I recall they were all just a little below normal. After I had the test done I asked the NP (who had told me everything was normal) if there was anything even a little interesting or unusual about my results, and she said no, it was all completely normal. (seriously... I really hate the medical profession). So anyway, here is why these numbers kind of worry me: I did the echo lying down. This is my best position! I've read that people with POTS tend to have a stroke volume that goes too low when they stand, so if mine is starting out low and then going even LOWER when I stand... that's kind of scary. Also, I sometimes get swollen ankles. Actually pretty often. Years ago I was worried I might have heart failure, and I asked a doc about it; he said "your ankles aren't swollen so you can't have heart failure." So now that I'm getting them I get a bit nervous sometimes. In some ways I almost don't want to know if something is really wrong. It's disturbing because I was actually feeling well the day of the echo. I wonder what it would have looked like if I'd gone in the day after my TTT (when I felt truly awful). Do you think it's something to worry about?

For me coffee is at best helpful and at worst has no effect. As far as I can tell tea has no effect. I have them both pretty frequently. If you want to see how they affect you, I would recommend choosing a day when you have nothing planned, and making a really weak cup of green tea. If it doesn't bother you, then on another day you could try something stronger. But I would proceed with caution, since it seems like some people have a really bad reaction to it.

Alex, thanks! this will give me some good stuff to read while I travel this weekend. =D

Racer-- yes, I am hung up on the wording! I hate so much that my diagnosis is basically "fainting". It feels to me like I'm getting diagnosed with a symptom rather than an underlying disorder. I'm curious, how do you understand POTS? I mean... if someone has POTS and not NCS, what happens to them when they stand and why? (obvously the heart rate goes up, but is it for some other reason, rather than trying to keep the blood pressure up?) this is really interesting!

Ashley -- good luck! The experience will probably not be the most fun you've ever had, but hopefully the data will be worth it! =)

Racer - do you mean that my heart is beating faster to keeo my blood pressure from dropping, and then at some point it can't keep doing it and both crash? That is definitely how I understood what was happening during my test... but the blood pressure crash didn't actually happen until the very end when I fainted. During the test, I definitely had symptoms before my blood pressure fell. Alex -- yes, it is torture! Right as I was about to faint, I was thinking "WHY did I sign up for this? What made me think this was a good idea? How could I have been so stupid?" I was saying "muh meh meh enhh" (non-linguistic expressions of extreme misery). This is not a test I ever want to do again! chaos -- that's confusing! you would think an "ordinary doctor" would listen to what the CC and Mayo are saying. I can't imagine a bp of 30/20, that must feel terrible. The thing that annoys me about the NCS but not POTS diagnosis is that from reading about NCS, it seems to be a response rather than an illness. Meaning that if someone who is normally healthy faints once in their life, that person has NCS. But with me... it's obviously related to standing, my heart rate is elevated while I'm feeling faint, and I sometimes have symptoms between episodes. And I run into these problems all the time. It would be different if they called it "postural NCS syndrome"... then I feel like it would capture more of what I experience. Because to me, a diagnosis of NCS sounds like a diagnosis of "I fainted at least once in my life."

Hanice -- your response made me LOL, thanks =D It's nice to get validation and respect in a medical context... I've almost never gotten it from an actual doctor! =/ And Alex is right about NCS... my doc calls it vasovagal but it seems like people use NCS more often on these boards. Alex -- that's kind of interesting... I don't normally faint either. But if I'm standing still for a while I will feel like I'm going to faint and need to sit down. In real life I've only actually passed out twice, and once was when I was a toddler right after a vaccination. I sometimes wear a heart rate monitor around the house and I frequently see it in the 130s and 140s without feeling faint... I just feel bad and want to sit down, but it's not the same.

Hi Krissy and Alex, thanks! yes, I thought that was how it worked... HR going up more than 30bpm or to greater than 120, and since mine did both, there's not much ambiguity. I heard the doctor say something to the nurse during the test (I think he thought I couldn't hear him)... "this isn't the pattern we expect to see with POTS. With POTS the blood pressure would be going up. She technically fits the definition of POTS, but she also fits NCS, and I don't want to give her both diagnoses." (As I type this it's striking me as really weird because I think he said I fit the criteria for NCS before I fainted! what?!) I don't know if I can get a 2nd opinion, especially since I'm moving away in a month... might not be worth it. But I've had enough bad experiences with this office that I at least don't think I'll be going back to them. Thanks again for your help!

Hi everyone, I had a TTT last february and wondered if anyone could help me with my results. The doctor said I did NOT qualify for a POTS diagnosis even though I "technically fit the criteria". (?) He diagnosed me with NCS. I guess I just wanted to know what you guys thought about it. Here are my numbers: Initial supine: bp 111/74. HR 70 bpm. tilting: 1 minute after tilt: bp 106/77, HR 102 3 minutes after tilt: bp 107/76, HR 92 5 minutes after tilt: bp 116/78, HR 104 7 minutes after tilt: bp 126/93, HR 128 9 minutes after tilt: bp 66/45, HR 45 (I fainted at this point) I really wish they had tested me at 8 minutes to see how high my HR got before I fainted. But anyway, I think I have POTS too, since my HR went up by almost 60 in 7 minutes. Why would he not give me that diagnosis? Thanks in advance!