lavender

low blood volume is mentioned a lot here. Just wondering how that is tested and what causes it?

A lot of the time when I have blood drawn from my arm the lab person has trouble keeping the blood flowing. My veins aren't hard to find, but often the flow into the needle gets really faint or stops. they usually make a comment about how strange it is and aren't sure why it's slowing down or stopping, because the needle is in right. Sometimes that have to really work to get the blood they want. Does this happen for any of you? Is it possible this could be POTS related? I wonder if there would be a difference if I layed down for the draw?

I've noticed the same thing. I've done a few Poor Man tests at home to show my doctors the numbers. I've noticed that my wrist pulse gets more and more faint while I stand. I use a digital BP monitor cuff. I've noticed that when my heart really starts going and my pulse gets faint that the monitor has a hard time getting a reading. It'll give me an error message 3 times out of 4, but works fine other times. my hands and feet and also legs get super purple durring this. As soon as I lay down my pulse is strong again and my hands and feet usually look more normal. Deucykub, the two times I've done pulmonary tests my DLCO (gas exchange in the lungs)has been 66% and 68%. I havn't been diagnosed with POTS as of yet. But I've wondered if this is something that happens in POTS? Anyone else? Did they say why your DLCO was low? They followed mine up with a CT scan to see if there was inflammation or scaring causing it...there wasn't. My nail bed get purple at times, but not so much my lips. Like I said, I'm not sure that I have POTS at this point....so take what I say with a grain of salt! I do have big changes in my hearthate and BP when standing.....

What is considered a "normal" range for an adults heartrate?

I've never used Yohimbine, but I have been given viagra, levitra and cialis. They are all used mainly for erectile dysfunction. I was trying them for my vascular problems in my hands and feet. It sounds like they are similar to yohimbine. They all made me feel very gross. I am curious why a doctor would give you this type of vasodialator knowing you have POTS. How are you handling it? Anyway, just thought I'd let you know I know how UNFUN it is to go pick up an Rx for an ED med, being a female!!! Luckely I know my pharmacist pretty well now, and he knows some about my case and that my doctor is trying out different things. Still it was embarrassing. I was glad none of the meds worked for me and I didn't have to stay on them!

Yes I tend to agree that this must be more than raynauds causing these problems in my hands and feet. I've gone around and around with doctors for so many years trying to get to the bottom of it. It's frustrating....to say the least! I read up a little bit on RSD. I've actually looked into that in the past. I'm not thinking it sounds like me, but I should read more about it. I'm hoping that one of these days I can find a doctor who will take the time to look at the entire picture of what is going on. So are compression stockings ok to wear if you have raynauds?

Thanks Julie, I actually have not been diagnosed with POTS. Because of the way vasodialators always make my other symptoms worse and by then paying closer attention to my BP and heartrate, I began to wonder if I may have something autonomic going on. I talked to my doctor about the idea a few weeks ago. He agreed with the possability, said he would think about it more and gave me Propranalol to try. I've since been learning about POTS. It lines up with a lot of my symptoms, but I havn't talked to my doctor about it. So anyway, I've taken the Propranalol the last two days and am still watching to see what I notice on it. If I remember right, you are just starting treatment for POTS right? Have you tried anything that helps your raynauds? I forgot to mention earlier that my hands and feet get worse with exercise or too much activity. Very much exercise, being on my feet too much or doing a lot with my hands (like doing a lot of knitting or sewing) makes them flare up. I'm not sure why. This doesn't usually happen in raynauds. Doctors usually tell me I need to be exercising to improve my circulation, when they see my hands and feet. They don't understand when I try to explain how very much of that makes them worse. My feet also get worse when they are below my heart.....sitting, or standing, makes them look AWFUL and HURT. Julie, I'd be very interested in hearing how your raynauds responds to treating your POTS.

Some of you have mentioned having raynauds. Is there a connection between raynauds and POTS? Can having POTS make your raynauds worse? I have had vascular trouble in my hands and feet since I got sick years ago. My fingers and toes get really swollen, red and purple. They get really painful chilblain like sores on them. My fingers mostly get them in the winter. My feet have gotten progressively worse over the years and have the sores all the time now. They are very purple all the time now. Sometimes the sores lead to open ulcers. Some of my doctors have said this is raynauds. Others have disagreed, or thought it was raynauds plus vasculitis. We are discovering that all 4 of my brothers and sisters have raynauds as well. This leads us to think that mine must be rayauds. But my case is so different than theirs. It doesn't come and go with the cold like theirs does. I don't really have the three color change like they get....mine feet just stay purple and red. they don't get the sores I get. I also have constant tingling in my feet. It comes and goes in my hands. Some of my toes are partly numb and I've lost a little tissue on a few of them from past ulcers. I'm wondering if the possibility of pooling in my legs could be making my rayauds so much worse? POTS pooling doesn't ever cause actual skin sores does it? We've tried tons of different types of vacodilator drugs (calcium channel blockers, viagra, levitra, alpha blockers, prazosin, clonidine, trental) None of them make a difference in my hands and feet. and most of them make me so much more sick. (I'm thinking they make the pooling in my legs worse) The clonidine made my hands and feet a lot worse. I'd be interesting in hearing if raynauds is a common thing with POTS, and if one can make the other worse. I just started on Propranolol a few days ago. I'm nervous that it will make my raynauds worse...isn't it a vasoconstrictor? I talked to my doctor about that. He said to try it and see. So far my feet are tingling and burning more, but I'm not yet sure if it is because of the BB. has anyone had this trouble?

I understand how you feel. I'm wrestling with the same thing. I'd like to bring up the idea of POTS with my doctors, but I'm not sure if they've heard of it and I'm not sure if they'll hear me out. Sometimes they make up their minds about my case, and disagree with what I am saying......like I don't know what's going on in my own body! I'm nervous that if I do too much self diagnosing or asking for specific tests, that come back normal, that they'll get really frustrated with me. But i also feel like if I dont that nothing will change. It's tricky to learn how to be pushy with doctors, when you need to be, but not hinder your relationship and communication.....if the relationship is worth maintaining! Sometimes it's not! I HOPE you appointment goes ok and that he really listens to you.

Thank you all so much. Hearing from you helps me sort through all of this and try to understand what may be going on. So, do you know WHY there is a connection between POTS and stress? What is going on in the body to cause this inability to handle stress...emotional or physical? I have always had a sleep disorder....according to my Mom, since I was born. I have a lot of trouble falling asleep and keeping on an even sleep cycle. I lay awake sometimes most of the night, even though I'm exhausted. (you know the story) This tends to happen after I've over done it durring the day physically, or had a reaction to stress like I described. I've always said it feels like my body is full of adrenaline, from overdoing it in one way or another, so it can't shut down and sleep. From reading here, this may actually make sense! Does this sound familiar? I've learned a lot over the years in figuring out what my boundaries are, how to live within those boundaries (to help keep from "crashing" as much), and what the signs are of when I've over stepped them and am headed for big trouble. At times though it's impossible to avoid overdoing it, especially if you have times where your energy level is zero! Tanzanite, I feel for you especially. It's hard to deal with life if your body can't handle processing the emotions of it. Spinalremains, what is phenobarbitol?

Can POTS or similar autonomic conditions affect how your body responds to stress? I'm a pretty layed back mellow person. I'm noticing though that my body seems to really overreact to any kind of stress. All it takes is getting just slightly overwhelmed, upset, or even excited and my heart starts to pound hard and fast, I get really hot or cold,and sweaty, my stomach gets upset and I get really bad diarrhea, sometimes my body shakes or my teeth chatter. It also feels like I get suddenly really dehydrated, even though I drink a LOT. It feels like I'm full of adrenaline. This leaves me totally wiped out. Once all of this starts it's hard to get my body to calm down. I have an overwhelming feeling that I need to lay down. I can understand all of this happening if I am REALLY upset or under a ton of stress, but it happens so easily, even if the issue is no big deal. Does this type of thing happen with POTS?

My doctor gave me an Rx for Propranolol, 10 mg, to try. I havn't been diagnosed with any kind of dysaut at this point. I explained to him the changes I notice in my heartrate and BP when standing. He said to try the beta blocker, see what it does and we'll look into the possability of something autonomic. So anyway, my rx just says, "take as needed." This isn't real helpful! from reading it sounds like everyone here responds to this med differently. Have you found that there is a better time of day to take it than others? Is it short acting or long acting? do you think 10mg is a good dose to try starting on? Thanks! Wanted to run this by you before I give it a try.

I was wondering if POTS can cause vericose veins. ?? Also does your pooling ever cause erythromelalgia? http://en.wikipedia.org/wiki/Erythromelalgia

Can any of you tell me more about hyperadrenergic POTS? What makes it "hyperadrenergic?" For those with this form, how does it affect you? What are catecholamines? Why is it tested while vertical? Also what is isoproterenol infusions? (from an article by Dr. Grubb) Trying to understand all these new words to me. THANK YOU!

Thank you everyone! Yes I should do another TTT. But ugh I dont want to! I'll talk to my doctor about it. Rachel did you do a TTT while here in Alaska? Can I ask where you had it done? I can relate to what you said about the Neurologist. My doctor always asks me "so what are you thinking? What do you want to do?" I appreciate that he listens to my opinions but he's the doctor, I wish he was more proactive. He always tells me someday I'll wake up and all of this will be gone. I think that's his hope because he doesn't know what to do! I'm not interested in just sitting and waiting it out! Thanks for all the help and for Grubbs weblink. I'll go read it.

Maxine, Because of vascular problems in my hands and feet I get sores on them. At times I get them under my nails. It can be so painful because it makes so much pressure build up under the nails. This sounds a little different than that you are describing, but I know how much it can hurt! Does this happen to your nails alot? Do you know what is causing it? my nails dont split but they form big pits of humps. I'm not yet sure of the cause. Take good care if you have an infection.

thank you for your replys! I did actually do a TTT about 10 years ago. We wondered by my symptoms if I had neurally mediated hypotension. It didn't go very well. The guy who did the test asked me if I have a problem with fainting. I don't. And I didn't pass out durring the test. The test just made me so so so tired. For some reason the guy running the test was really rude throughout the test and made it clear to me that he didn't think I needed it. I'm not sure if the test actually showed anything helpful. I was crying and just wanted to leave. We did rule out NMH at that point though. I get really stressed durring appointments.....I think from fighting doctors for so long, trying to get help. some of them can be so hurtful when they cant figure out what is wrong. (I've seen some kinds doctors as well!) so because of this and because the guy running the test was making me upset, my heart was racing. I'm not sure if they would have seen a change in my heartrate and blood pressure because they are high durring appointments anyway! Is that a possibility? I am just working with my GP doctor at this point. He's nice to me, but at a total loss as to what to do. and not very proactive at this point. We're looking for someone more specalized. I'm not sure though even what kind of specialist to see. I've worked with rheumitologists in the passed. I did see a neurologist one time. But I was only at the hospital for a few days, I was out of State (I live in alaska). He was puzzled. I didn't have long enough with him to get anywhere. What is an electrophysiologist? Last time I was in to see my GP I showed him my numbers from my own at home "TTT." He was very interested. With my fatigue, weakness, chills, gasto problems, exercise intolerence, brain fog and circulation issues, we both started wondering if we need to be looking into something autonomic. He gave me a beta blocker to try. Propranolol. I'm concerned to try it though. I have alot of trouble with the circulation in my hands and feet. Most of the time the vessels in them constrict (we are thinking) too much. They are really purple, get really inflammed, and sometimes get ulcers. So I'm worried a beta blocker will make that worse. They keep giving my different kinds of vasodialators to try and improve this problem. The problem is meds that dailate my blood vessels make all my other symptoms SO much worse! I get SO tired and weak that I can't be up at all. I just feel like a jelly fish! If I sit up or stand up my heart pounds so hard and fast and I get so much pressure in my legs and feel like I'm going to puke. This happens without any vasodilators also. Because all the vasodilators seem to worsen my symptoms, I began to wonder if my illness has more to do with the way my circulatory system is working than I realize. I've been reading all I can about different kinds of dysautonomia. I'm trying to decide if it sounds enough like me to pressure my doctor to look into further. I'm a bit afraid of yet another bunny trail! That's why it helps so much to talk to you while I read and think. Sorry this is quite long!

I'm so excited to have found this forum. I have so many questions! I think it'll help me to run some things by all of you. I'm 25. I have been very sick with a illness that so far no one (I've seen sooo many doctors) has been able to figure out. I won't go into all the details in one post. It started gradually when I was a young girl. It didn't start to really "take over" my life til I was about 11 or 12. From 14, on, I was not longer able to go to school. From reading your posts....you all know the story! I've always noticed that when I am on my feet my heart really pounds and I have an overwhelming feeling I NEED to sit down. It gets alot worse the more sick I feel. because of all my other symptoms, I've never really singled this out and looked into it. I recently got a blood pressure monitor and started watching what my heart rate and BP are doing. I've found that they are all over the board. Laying down my BP has been between 90/55 to around 112/85, heart rate between 60 and 80. When I am standing i'm noticing my heart rate goes from about 115 to 146. Some times it'll shoot from 80 to 140 the second I stand up, other times it'll climb more gradually, but the longer I stand the higher it gets. I expected that because I feel my heartrate go up and because I feel so gross when I am up, that my bp is dropping. I'm finding though that most of the time it streadily raises along with my heartrate....to say 120 to 140 over 80 to 100. So my question is, does this sound abnormal and worth looking into more? Do any of you have a postural raise in blood pressure? I've never considered the idea of something autonomic causing my illness, but in watching my readings lately and reading about autonomic symptoms, I'm beginning to wonder........... wow the idea that I may actually get to the bottom of all this is hard to believe! thanks for any input!