yuliya

yeah I'm pretty much done with him. No need to waste time on that.

I had headaches from it and increased thirst, so I stopped taking it. everyone reacts differently to it.

you might want to check this: http://www.drkrider.com/Topics/Symptoms/skin,%20darkened.htm

Are you sure its not your liver acting up as far as the color goes? and I'm pretty sure the coldness is from the blood pulling I get that too. Im sure a lot of us on here have it. I know a few have an actual disorder that cause cold hands, but I can't think of the name

My heart rate went from 88 to 154 during the tilt test. My bp is unprdictable lately it has a narrow pulse pressure, during the test it went up a bit. Usually when I do a poor mans test at home (when I'm bored mostly, or make sure its still wacky) I get 77 laying down and 117-160 when standing.

1. Tachycardia

2. dizziness

3. fatigue

4. headaches/nausea

5. leg pain

I get it at night sometimes, but mostly in the day. I have more palpitations at night while lying down even with a low heart rate.

Well, apparently I don't have POTS, even if my tilt test result say I have it because my blood pressure does not fall (even if my pulse pressure is 20 on standing from 60). This is according to a neurologist I saw today that said him self that he doesn't know much about dysautonomia. I don't understand how doctors can make these outrageous claims when then know nothing on the subject. If you don't know send me to someone that does, don't tell me there is nothing wrong when you know nothing about a condition.

sorry about the rant. I am so tired of doctors and there treatment of people.

I think for me I feel like sometimes I get so wrapped up in pots its all I think about, sometimes I feel like I have to go off for a month to get myself to think other things besides my health. Maybe thats what happened to some. I have gotten so much support here and answers but reading everyday about others not doing well is sad and get to you after a while. I don't know how some of you guys stay on here and continue to be so helpful.

The medical term for the difference between your systolic and diastolic BP numbers is Pulse Pressure. Normal BP would be 120/80 (120-80=40), so the pulse pressure would be 40. Your pulse pressure is a good measurement of your blood volume. It makes sense that a person with OI would have a supine pulse pressure of 61 (129-68) but that it would drop on standing to 20 (110-90). Any pulse pressure under 30 is low. You may actually have an adequate blood volume, but because you have OI your blood pools in inappropriate places and your brain detects low blood volume.

Your lower BP number is raised because your body is doing anything it can to get more blood to its brain. Hope that makes sense.

I thinks I understand. basically it confirms my diagnosis is what Im getting from this. thanks so much for explaining it.

So I got bored as I tend to do easily and decided to give myself a poor man tilt test at home just to see what I would get in numbers. Laying down I got a blood pressure of 129/68 with a pulse of 75, on standing one minute I got a pulse of 95 and the same blood pressure and then I realized that I was squeezing my legs and butt super hard, as soon as I let go my blood pressure went to 110/90 and a pulse of 112. So my question is what does it mean when your top number in blood pressure falls and the bottom number goes up? seams weird to me.

thanks for any help

I have noticed that every time I have done more around the house or pushed myself through the day I have really bad muscle pain in my calves/legs, its almost muscle spasms feeling. Does anyone one else have the same thing?

Oh...It was low. Guess I didnt really answer your question in the first place did I...sorry, I guess I was thinking when the midodrine increased her bp, it was sort of not low, higher but not really high enough...then we doubled it, with no ill effects....if that makes any sense...sorry for the confusion!!

it ok, confusing question, I just wanted to know how people were effected with normal bp. thanks anyway.

My daughter started on 2.5mg of midodrine three times a day. It helped her to not be dizzy and stopped the near passing out by increasing her standing blood pressure - but that's all it did for her; her doctor suggested doubling it to see if it would help with other symptoms as well, I was concerned about increasing her blood pressure too high and he still wanted to try it, he said it may or may not increase it, and when we did increase the dosage it did not push her bp readings any higher. It also did not help any more than the 2.5mg, we don't think.

how was your daughters pressure before the midodrine? was it low/normal/high? thanks

I notice that most of us have days/weeks when we feel to ill or weak to get out of our chair. I can't help but wonder how you keep your household running?? I live in rural area where there seems to be an unending list of chores that always need doing. I'm a senior & can't afford outside help nor can I afford to leave my home & go to a retirement home. It seems to be a hopeless situation for us on a fixed income. thanks.

I live with my parents and they help me with my two kids aged 8 and 6, and my husband drives me every where and does a lot of things when I can't. I guess I'm really lucky to have so much help and am very thankful for it.

why don't you search ms and pots you will come up with a few studies. I think if you search even these forms for ms you will find a few conversations. I know for a fact that a lot of ms sufferers also have dysautonomia, but I really don't know if blood pressure can cause the lesion by itself. sorry I can't be of more help, good luck.

I just want you to know I feel the exact same way that you do. I prepare all this stuff to say, all the symptoms, all the test I want and then I think the doctor is going to think I'm nuts (most of the time they do), but you know what I would have never gotten my POTS dx without the pushing forward with symptoms, tests and research. Go with all of it, that the only way us potsy people ever get any treatment, just remember 15 years ago they would say we all had anxiety.

good to know it makes me feel a lot better that your pressure has stayed normal. thanks. I'm going to have to give it a shot.

I was told that I have "probable" ms, that is affecting my nervous system, but I'm just wondering if anyone else has any brain lesions that

werent diagnosed as having ms,and have Dysautonomia ?

They need to do a lot more testing then MRI with one lesion to call it MS. I was just reading about that a few days ago. I would try for a second opinion if you feel they are wrong. But you can also have both MS and Dysautonomia together and its not uncommon.

Thanks Casper for asking this question - it is a really interesting topic.

Yuliya, Dani, Naomi, Frugalmama - can I just clarify one thing - did you have POTS before you got pregnant? Or did pregnancy cause your POTS/dysautonomia?

I have had pots all my life it seems, and I don't really think it effect my pregnancy since each pregnancy was different. sorry I left that out.

Has anyone here with a POTS diagnosis been put on Midodrine while there pressure is fine. POTS effects my pulse and my pressure stay fairly normal. After my doctor talked to Dr.Grubb he is now putting me on meds that he suggested down the list one at a time. I have tried Flourinef but it gave me headaches and made me very thirsty, now I need to try midodrine, but I'm scared because my blood pressure is normal already. Any one with tried this let me know and any side effects.

Thanks

K's on .3mg of Florinef and 5mg of Midodrine 3x daily. This week she's really struggling with her BP being as low as 73/41 and not higher than 84/48 at any given point. As of today she's back in bradycardia... heart rate has not been over 45 since yesterday afternoon. She's quite fatigued and very weak, but is doing her best to manage. I called the doctor's office today, but didn't get a return phone call.

How low is too low on BP and heart rate before you throw in the towel and head to the ER? What do you typically use as a standard to say enough is enough? I refuse to take her to our local hospital after what we went through last time. So, we'd have to take her 2 hours away to Duke where her doctors are.

I say if you feel like its getting to the point of going to the ER then maybe its a good idea just to go for the sake of having an answer. Better safe then sorry, and why worry when you don't have to.

I have had the memory lapses you had and weird little episodes like I blank out for a minute. It seems like time just stops, but after that I am fine. I don't know if mine was caused by low pressure but its possible. I really don't know what to suggest to make it better. My symptoms seem to cycle all through the month. some weeks are horrible then I will get a week or a few days where I can function somewhat better.

LOL Todd. You are to funny. I thought exactly the same thing everyone on here said. I tried to exercise, what happens when you just can't get past the symptoms? really wish he would study that part. I have also had POTS all my life even if it was misdiagnosed, exercise never seem to help my symptoms.

sound like a migraine to me. Migraine symptoms can change and sound like yours did. I would say if you are very worried go to the ER. Better safe then sorry. I get the same thing followed by really bad pain. the eye thing can last from 1 hour to 6 hours.