sue1234

I'm sorry its a bad time for you. That ol' stress is soooo bad for us! I hope that something/someone comes into your life soon that will be a positive support for you.

Yea, I'm an abdominal bloater. Sometimes so bad I have trouble getting a full breath. I've tried to explain this to g.i. doctors and they just don't get how severe it can get! FOR ME, the longer I stand up, the more AIR I get in my stomach and I assume blood pooling in my abdomen. I don't understand the mechanics behind the air in my stomach, but if I burp, it gets slightly better.

First of all, you really need to have the bleeding addressed, whether that's with surgery or not. But, as a result, you've become(or who knows, could have been for a long time) anemic. I don't know why they just gave you fluids--did they not at least tell you to get on iron? You may find that addressing the anemia MAY make your tachycardia issues better overall. Then, once you are no longer anemic, then look again at how you are feeling. If you still have orthostatic hypertension, then, yes, you should go ahead then and try and find an "expert" doctor to help look into it. Keep us updated with your "trials and tribulations".

Just a note here on the morning surges--I get these also. It is kind of like a low and a high, put together. I get up feeling fatigued and draggy all morning, yet fighting the internal buzzing-feeling, feeling hot, and super sensitive upright, POTSY problems. I feel somewhat more settled in the afternoon. And my brain is like mud all morning. My husband knows not to ask for opinions, explanantions, etc. until after lunch.

Sounds like it wasn't a fun test at all! It's funny how many ways our body can overreact to such minor things. Although, holding your hand in ice water for a whole minute has got to hurt even a normal person, much less the whole systemic reaction you had because of POTS.

Sorry, I can't answer as I can't do enough to know if I get inflammation! I was curious, though, about the "cold pressor" test. I can figure out probably it was done by a neurologist, but what is it done for and what did it make your body do? Curiousity gets me too often!

Firewatcher: Thanks for your explanation! Shoe: I would still be interested in hearing all that your endo discussed with you, and would like to hear all aspects of the testing, etc. that he does with you. Thanks!

". Your urine tests have a very low osmolality and the plasma (I didn't think I had that done, hmmm) is technically within normal range, but if you were merely drinking a lot it would not be as concentrated as it is. Let me see your tongue." I have a question. What exactly did he mean when he said, "merely drinking alot it would not be as concentrated as it is." I'm trying to understand this concept, as I drink/pee alot, and my ADH is low. So, is he saying that with DI you have concentrated urine? I don't know why I was thinking it was the opposite, but I really want to learn and understand this. Thanks!

I live in Louisiana and hibernate in my air-conditioned house from June through September. You don't know how many times I look at the weather map RIGHT at San Francisco and tell my husband, "They have the perfect weather there!"! Everyday I see the high in the 70s and lows in the 50s. I guess y'all get your odd share of hot weather, too! I use to live in the summer sun until POTS. Now, like you I guess, 5 minutes in the summer sun and my skin is getting these flat red, quarter-size areas that get really bright red on my arms and legs. It looks bad, but it doesn't itch directly. Don't know what my problem is.

Maybe you could advertise for a teen driver"babysitter" that lives nearby that could pick your daughter up on those afternoons and you just pay for the hour, or whatever it took for them to do the job. We live in a small town and some of our town's babysitter's would shuttle their "kids" around after school to their activities. Just an idea.

I also was wondering--when you fill out the form to apply to be a research patient, do you need a doctors recommendation? I filled mine out last winter and never heard back, so emailed to ask if they had actually received my application, and never heard back. I would at least like to know something like, "I'm sorry, you don't meet our requirements for this study" or SOMETHING! I hate that they just ignore you. Anyone know about needing the doctor for the research study or just to have an outpatient appt.?

I have had my bed tilted for probably 10 years, and my POTS began 3 1/2 years ago. So, it obviously didn't prevent mine by any means. I've read before that tilting the bed causes your body to produce more blood volume, I believe.

Thanks for all the info! I have read and reread all of it. I understand most of it to some degree, but my brain really only functions in the afternoon, and not everyday! And I agree, I am not hallucinating, just noticing a reaction of my body to some physiological process.

Thank you for clearing that up. I can see where when one is not acting up to par, another might kick into gear to synergistically help the situation. Is Midodrine analogous to a hormone like DDAVP is to ADH?

So, if my body spews out excess ADH or I take Midodrine, I can get a phenomenom called "formication". A new word to add to my vocabulary!

Thanks for y'alls reply. Oh, yes, it was Midodrine that has this side effect. I knew I had read somewhere that one of the POTS drugs had this. I've never had this feeling before POTS. In fact, when I first had it, I quickly used my fingertips to find the "bug" that HAD to be crawling around on my scalp! And the next time, same thing. Finally, after a few more times, I figured out there were no "bugs" on my scalp, just something weird going on. Then about a year after that, I read about the POTS drugs and saw that side effect and realized that's what had been happening all along, even though I was not on any POTS meds. So, recently I had my antidiuretic hormone levels checked and they were low. Now that you said Midodrine, that is what replaces ADH. So, I guess it's possible my body was trying to get my blood volume up way back when it first started, and now it either quit or can't anymore. Interesting. I have to admit, I felt better in my first year with POTS than I do now three years into it. Maybe my reserves of ADH were still somehow helping.

I know one of the POTS meds is supposed to have that side effect(can't remember which one). For the 3 years that I've had POTS, the first two I would get this "writing on scalp" feeling about once a month or two, and it would last for a couple of days each time. Again, I am not on any meds, so it is not a side effect. I've not had that feeling for probably almost a year now. What exactly was my body putting out to cause that feeling(what hormone maybe?)? I'm trying to make a connection here on myself as to what my body was trying to do in the initial part of the illness. Thank you for any help figuring this out.

That is great news! Congratulations.

Thankful- With your elevated catecholamines, have you been thoroughly checked for a pheo?

I was re-reading some of the older posts. I was on another forum for dysautonomia(POTS) and there was a discussion there also about high insulin levels. The new thing I would like to add is that I read somewhere(didn't write it down, but some medical article) the other day that insulin causes vasodilation, so was wondering if that could cause the pooling, initially, then the body senses the hypovolemia, then the catecholamines kick in. Can we get some feedback, stories, or any thoughts on this subject?

Anyone else have any stories about their ADH levels and if it was treated?

I'm thinking about making the trip. I faxed in my info last winter, but never heard back anything. So, I guess I'll see if I can get a regular outpatient appt. with them. I just feel like I would be missing out on all the in-depth testing they do if you go as a research patient. Can anyone give me information? Also, how long did it take to get in for an appt.? How many days are you there for, 1? Thanks.

Hi Chrissy! I just wanted to say I live near Lake Charles, so not far away from you at all! Do you see someone locally for your POTS? I haven't really found anyone in Lafayette or Lake Charles that can truly address POTS, so trying to get into someone in Houston. Can't help you on the breathing issue--I just get short of breath when I walk more than about 5 minutes at a regular pace. I'm thinking there is just not enough blood to pump oxygen to the cells so the pulmonary system(and cardiovascular system) are both working really harder than normal, and in the long run, can't supply enough. That's just my personal theory.

I found their website at www.myfirstforwomen.com, and the blue magazine that says "on sale now" is the one I read the article in. It's on page 38 and is titled, "Tired? Foggy? Just Can't Focus?".

I know this might be a far-fetched idea, but having POTS puts us in a unique "zebra" category! Have you been checked for a pheochromocytoma? According to researchers at Vanderbilt, a pheo could be a reason for POTS, having contributed to low blood volume. People with pheos often say just laying on the side where their tumor is is enough pressure on it to cause pheo symptoms, such as palpitations, anxiety, etc.