kjd111

Her pituitary has been checked and the results have been mixed. She has a small adenoma on the posterior part, but no one has told me its causing any problems. This part of the story belongs under the topic "frustration with doctors" i suppose. When she first fell, i took her right away to the ER. It was a serious fall and she was not lucid for almost an hour. It was very scary. Rather than be concerned with her head, the ER seemed more concerned with why she had passed out - did heart tests. I have no issue with that (and the tests showed no issues), but they just said "oh she might have a little concussion, she'll be fine". 3 days later, it was very clear she was not fine. Took her back and demanded a head CT - no bleeding. "She's fine", they said. But, she wasn't. It took almost 8 weeks for her to be better balance-wise and she had what we now know was diabetes insipidus. Our pediatrician is very nice, but ancient. He couldn't explain why her brain was foggy and she had to pee every hour. And, that's when she started passing out every morning when she got out of bed. It took me about 7 doctors and almost 15 months to find one who discovered that she had some sort of autonomic dysfunction. Her brain didn't clear for almost a year. They drew FSH, LH and estrogen off and on during that time just to see if the pituitary was functional. She had levels in the mid-range and since she wasn't cycling, no one could tell us if they were good or bad. Her chest actually swelled so badly, that she got stretch marks. Between that and the fluid retention in her mid-section, i thought at one point she might have cushings. Her face was even flushed. We had that very carefully tested by someone who knows cushing's and she didn't have it. But she does have mild GH deficiency and is on a low dose replacement for that - and it does help. Her cortisol levels are low in the morning, average in the afternoon, and apparently do go down at night (tested at 11pm twice and they were under .5, but she doesn't have much ACTH. Her thyroid is average - average TSH, low average FT4 and low FT3. They put her on a really low dose of t3 and it helps a bit. But most of the response i have gotten is "she has pituitary hormones, the cortisol does go up a little in an ACTH stim test (went from 9 to 16) and she doesn't appear to have diabetes insipidus, so her pituitary must be fine". Its frustrating because her pituitary tests are all a little borderline, a little sluggish, but not zero - so apparently no one sees its a problem. In fact, we didn't get taken seriously at all until we got to our current endo, who found the orthostatic hypotension and started testing catecholamines. Hers are low/mid range lying down and didn't move at all upon standing. Then he found out she has zero aldosterone - but mid-range renin. He couldn't explain that and seemed surprised. That was the aha moment. So.....................long answer but for whatever reason, the femara helped a little. But she still produces estrogen. The estrogen seems to make her swell. The progesterone seems to make it quite a bit better. I am concerned about the concept of progestins however. I just don't know much about the difference between those and progesterone.

I know this has been discussed on some older threads but i couldn't find the exact one i was looking for, so thought i would start another. My daughter has NMH, with low catecholamines (vs. POTs). She has been sick for almost two years now following a moderately serious concussion. The medications she is on (dexedrine, midodrine, florinef, propranolol and indomethacin) have definitely helped some but she still continues to have a lot of fatigue and mysterious "water retention". What i have been told is that because her body doesn't have enough epinephrine and norepinephrine, her sympathetic tone is low and she is leaking fluid out of her capillaries into her tissues. Not surprisingly, this adds to her problems and she aches and is fatigued and has headaches even more when she is "swollen". For the longest time after her concussion, she didn't get a period. This May, she was put on Femara in an attempt to see if it would bring down some of the swelling in her breasts (tmi) because she retains a ton of fluid there and she found it uncomfortable and embarrassing (she went from a 'b' to a 'd' overnight - literally- 4 months after the concussion). The theory being, that the Femara would kill the estrogen. And so, her chest did slowly come down over the summer but interestingly, she started to have periods again and has more or less had them regularly since June. I found this baffling. No estrogen ought to equal no period in my mind. Then, i noticed something else. From about day 7 to about day 16 of her cycle, she would be really swollen with fluid (ie. lots of leaky capillaries) and she felt horrible. Around day 18-20, she would get a massive diuresis and stay unswollen for anywhere from 7 to 14 days. This was a new thing. It still swells when she exercises or is hot, etc. but the baseline body weight was almost 10 pounds less during those two weeks - not insubstantial! I asked our endo about this. He said it was the opposite of what you would expect. Most women swell during this time. He didn't know. So this month i took her to our ob/gyn and asked if they would draw hormones for a month so i could see what was going on. They agreed and drew blood on day 5, day 12 and day 19. She was really swollen all the way until day 17 when in 2 hours, it plummeted. The results were interesting. Day 5 had high FSH, high LH, low estrogen and non-existent progesterone. Day 12 had lower levels of FSH and LH, estrogen of 101! and non-existent progesterone. Day 19, 2 days after she deswelled, had low estrogen (less than 10) and progesterone of 26. I found this really interesting. First, I asked how it was possible to get a normal estrogen rise on Femara. And, if it was normal on Femara, then it must have been right up there big before she was on it. The ob thought perhaps she just was not on a high enough dose of femara. But, clearly, the progesterone seems to help. A lot. Maybe we didn't notice it before because.......she didn't ovulate, so, no progesterone. i did read that some folks on this board seem to do better in the back half of their cycles (and some don't). So, since i do a lot of research for a living, i...............researched. I found some articles mentioning estrogen is a dilator and progesterone a constrictor (and some mentioned the reverse), and i found some that said there is more aldosterone with the progesterone and so one retains more fluid in the back half of the cycle. My daughter also has zero aldosterone (again probably from the concussion), so i wasn't sure this was the mechanism that was helping. Then, I found an interesting article on Medscape that mentions that they found a difference in neuro-transmitters in the body depending on the stage of the menstrual cycle. The early follicular phase they called low GABA, low serotonergic and high sympathetic tones. The mid-cycle was high glutamatergic, low sympathetic and high serotonergic tones. The mid-luteal phase was high GABA, high sympathetic, low serotonergic tone. The late luteal was high sympathetic, low serotonergic and decreasing GABA. The following clip from it was interesting to me (probably because i'm a closet science geek): "Basic science and clinical data would suggest that the activity of specific neurotransmitter systems varies during different phases of the menstrual cycle (Figure 7). During the mid-cycle (high estrogen, low progesterone), there is likely up-regulation of the serotonergic and glutamatergic systems and down-regulation of the sympathetic nervous system. During the mid-luteal phase (high estrogen/high progesterone), there is up-regulation of GABAergic and sympathetic systems and down-regulation of the serotonergic system. During the late luteal and early follicular phases, there is up-regulation of the sympathetic system and down-regulation of serotonergic and GABAergic systems." (Ovarian Hormones and Migraine Headache: Pathophysiology of Migraine Headache). So, we have been having discussions with the ob/gyn. She thinks it might be worth trying to put her on a pill that is mostly progesterone to see if we can eradicate some of the really bad reactions she has during the mid-cycle timeframe. she's tossing around progestins vs. progesterone. She said the advantage of progestin, is it will completely kill the estrogen. The advantage of the progesterone, is its closer to what's going on now in her body - which we know has an effect. Since i am not at a point of needing hrt, i've no idea. Anyone been on either and have any thoughts? Thanks! Kate

Robin, My 15 year old daughter also has autonomic dysfunction - not POTS but probably NMH. Low catecholamines. She has a terrible time with angioedema - from her mid thighs on up. Can you describe what your daughter's angioedema is like? I'm interested because we, too, are going to be looking into the MCAD piece of this. She has a tremendous number of allergies and has started to break out in some sort of rash when she is upset or tired. But the water retention/angioedema has been the worst part.............

My daughter Hayley would also be fine with sharing. Let me know how you would like to do that if you are interested.

Daisy - i could ask my daughter. I'm not sure whether she's what you'd be looking for as 60%+ of her problems started after a blow to the head. But, its definitely a dysautonomia problem, so maybe it would work for you. Kate

Julie - I will definitely see if i can contact someone to see about the MCAD. I have actually lurked here for a few months now, and have been trying to get a handle on what the folks with MCAD are taking/doing that has helped. Based on that, we added Zantac and Singulair to the mix. Zantac was given in the ER, and was available over the counter and you know, i think it has helped some. In fact we ended up trading it out for the Zyrtec - which she was taking at night because we ran out of zyrtec one night. She was actually a little less swollen the next am and while i've no idea if the zantac did some of that, we went with it. The singulair she had been given by an endo last year who didn't know what was wrong with her but figured that the allergy thing was serious and wanted her to take it. At the time, the problems felt less immune related and more endocrine or something else, so (bad me) we kind of didn't take it. I read up on the MCAD thing and singular seemed to target something "leukin" or some such and i read that thing could cause swelling, so we rolled with that one and i think there's been a little progress there too. She still swells. It really bugs her because she swells from her mid thighs through her abdomen and into her chest. It changes her whole body shape and you know.........teenage girl..........body shape.........the tears are beyond when it happens. But, i've noticed that the more activity she pushes herself to do, the swelling swings seem a little smaller (4-5 pounds of fluid vs. 10). The endo is baffled because her blood pressure holds pretty well now when upright, but we know her capillaries still aren't behaving. Sometimes when she does spins on the ice, she'll get little broken blood vessels all around her eyes. She's skated since the age of 6 and never had that happen. Also, her exercise tolerance is still not great. But, given what i've heard on these boards, i think perhaps we should be thankful we have gotten as far as we have. And, despite the holes in her progress, i am so, so, so thankful for finding our endocrinologist - who not only didn't want to send her to a shrink, but knew in about 5 minutes based on his first pass at heart rate and her pallor. He is a little older, but has the patience of a saint and while we will keep looking until we can plug those holes, i feel blessed. He is worth his weight in gold. I have debated for some time how to handle the neurologist. I wanted to wait until i was 100% sure of our diagnosis and progress and then thought i would write to the medical center where he is on staff, show them her diagnosis, and describe what he said to her.

Julie, thank you so much for the reply. My daughter actually wasn't on any meds at the time for those anaphylactic attacks. She had one last August, one in January and one in February. We started with our current endo in March and to be honest, she hasn't had a lot of difficulty since. She had whopping spring allergies (for the 4th year), and we have been oh so careful to keep her away from the things we know did it last time - grapes, apples and dairy. So far, so good on that at least. Her IgA was normal, as was her IgG series. The IgM was very low (in the 20's) and her IgE slightly elevated (by like 2 points - a 159 when the top of the range was 157 or something). The pneumoncoccal titre test was the one that really opened the allergists eyes a bit. If i remember correctly, there are 10 or so parts to it and she was basically a zero response on 6 of them. The other weird part was that she started having small reactions to things like apples that she had been able to eat forever, long before they showed up on the skin tests. We took her in at 13 to a very well known immunologist where we are (he's not got the best patient manners so we didn't choose to go back when things got bad last year) and despite literally not being able to be around the smell of apples without her throat closing up, the skin test was negative. Last year it was hugely positive, but the grapes weren't and yet it was grapes that sent her to the ER - twice! The other oddity, was that all last year, the only major things that the other specialists could find wrong with her before her diagnosis, were low red blood cell counts, somewhat low hematocrit (35) and protein in the urine. We did the rounds of nephrologists, who couldn't find anything wrong with her kidneys (scans, test, you name it) but she consistently showed up with 2+ for protein in the urine - normal albumin in the blood though. After she started on the meds in March, the summer urine test showed negative protein and the one in August only a trace. It is the endo's theory that her kidneys have been "denervated" by the dysautonomia and the meds have helped - but the kidney issues were apparently never the cause of the water retention/angioedema. Its this latter part that we are becoming somewhat frantic about trying to solve. If you can help steer us to someone who could look at her for the mast cell issues, that would be great. We are in Dallas Tx. For Hope, your story with docs makes me deeply angry. While i have yet to hear that to my face (munchausen), we have had our share of docs blow us off and one particularly nasty neurologist last December at one of the MAJOR children's hospitals in our area accuse my daughter of "needing a shrink". He told her that to her face. Screamed it actually. She is in school; in fact that is what set him off - it was 2 days before finals when we went to see him in the middle of the day and my daughter was a 9th grader in pre-AP chemistry. She brought her chemistry and he told her that between that and being a competitive skater (or trying to still be one - rather unsuccessfully due to the health) that she had enough stress for a "holocaust survivor" and "needed help" and was a spoiled (name of town) kid who should get to a "shrink". Then he said that he didn't doubt she had some sort of angioedema but what we were describing was "impossible" (yeah - made it up just to hack you off buddy) and he wanted a drug screen on her. When i insisted she wasn't taking drugs - he said "performance enhancing" drugs. When i then said "i am at the rink in the viewing area every day", he said "her coach is probably slipping it to her". I was like "where, in her water for goodness sake"? This guy had clearly read too many dime store novels. And besides, if he knew anything about skating, they don't want to be bulky and strong - just the opposite - lithe and lean. We get eating disorder issues in this sport, not steroids! Our endo and the people who sent us to this guy were livid, and deeply embarrassed and apologetic, but as you can see, i'm a little sensitive about it still and that was 9 months ago. Whew. Deep breath. Off soap box now.

Oh my gosh, my heart goes out to all the parents here. And..........this scares me to death. My 15 year old daughter has OH, but not really POTS. She got this after a level II concussion. She got a formal diagnosis after 2 years of trying to find the right doctor who could tell me what was wrong - her bp drops severely standing up and her catecholamines are normal lying down but move not at all standing. Nor does she seem to produce much aldosterone standing (less than a 1 on the test). Does anyone know why the schoolwork is so exhausting? She is still in school, and i think (from reading here) perhaps quite fortunate to be able to do limited activity and carry a decent courseload. Of course, that's being on midodrine, dexedrine, florinef, indomethacin and propranolol. But, she definitely has lots of problems if she's studied a lot, or, strangely, if she is stressed out. The negative emotions seem to just crater her - its almost like she's not on any meds at all. I had also wanted to ask those of you with kids who have the mast cell issues, how you got a diagnosis. Interestingly, she started having lots of "allergy" type issues and illnesses 2 years before blacking out and hitting her head. She has always had celiacs (diagnosed at 18 months) but at age 13, became allergic to everything, and i mean every type of grain, dairy, environmental thing. Before she got on the meds this past spring, she had 3 anaphylactic episodes in 4 months - never happened before and even in the ER, they didn't respond super well to the epinephrin, steriods and other things they gave her. They even sent us home once after 8 hours in the ER, with her face still swollen (but breathing was better). She has had an allergist look at everything - and they found lots of allergies through the skin tests, but he's done tryptase and c-reactive protein, looked at all the Ig's, complements, etc. and other than low IgM and a really poor result on the pneumococcal titre test, found nothing. He told me that if she had mast cell issues, her tryptase would be off, and it was normal so he just never pursued it further. The funny thing is, she hasn't had any anaphylactic episodes since starting with all the meds above......... but her biggest problem is that she "swells". When she is tired, hot, stressed or anxious, her capillaries seem to open up and tons of fluid just escapes into her tissues - from her mid-thighs up to her shoulders and including her face. She used to get flushed, but again that has stopped since the meds. I am starting to wonder if somehow the triggers above are bringing on some sort of "histamine" reaction. Has anyone ever seen this before? Thanks so much. Kate

Ovulation is also a huge trigger for my daughter. She doesn't have POTs but has NMH, so instead of tachy, her bp drops more and she gets "leakier blood vessels" during that time. One thing I did notice is that around ovulation is when your FH, LSH and estrogen are at some of their highest levels and maybe that is one of the things that sets her off. Unlike some others, she is great the 10 days or so before her period. Wish we could figure this one out and eliminate it as its causing her a ton of problems.

Hi everyone. I haven't posted a lot (dedicated lurker) but my daughter has been diagnosed with NMH and possibly PAF - rather than POTS. She was prescribed Midodrine and it has definitely helped a lot, so this has been really shocking news. We saw our doctor today and he was completely blindsided..........and not too happy. He's been prescribing it for years and describes it as a "lifesaver". I wrote to the FDA and am in the process of writing to our state senators(we are in Texas). I received my response from the FDA this afternoon. I was very (underline very) sharp with them in my email about not coming back to me with a standard line of "seek alternative treatments" since they know full well there aren't any. It does seem they paid a bit more attention in the response i am copying below, but based on the tone, it seems to me that they are digging in their heels. This definitely smells politically motivated. "Thank you for your message to the Division of Drug Information at the Center for Drug Evaluation and Research (CDER), within the Food and Drug Administration (FDA). We appreciate the time that you have taken to contact us and we are certainly sensitive to your situation and to those who have similarly contacted us on this issue. At this time, we do not have any additional information, but should new information become available, it will be posted on our website: http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm222640.htm ProAmatine was approved in the United States in September 1996 under the FDA's Accelerated Approval program. This program allows for the approval of drugs (or new drug indications) on the basis of an effect on a surrogate endpoint considered reasonably likely to predict a clinical benefit, if the disease to be treated is serious or life-threatening, and if the available data suggest that it will provide a benefit over established therapies. In the case of ProAmatine, there are no alternative approved treatments for orthostatic hypotension. Accelerated Approval, however, has certain requirements that must be met as conditions of approval. Specifically, the manufacturer of the drug must conduct post-marketing studies to confirm the expected clinical benefit. Because neither the original (innovator) sponsor of ProAmatine-Shire Pharmaceuticals-nor anyone else has conducted the required post-marketing studies that confirm clinical benefit, which was a condition of approval under Accelerated Approval, this drug will be removed from the U.S. market. FDA realizes the importance of patient access to the treatments they need. FDA will work with any drug sponsor willing to develop an expanded access program, so that patients who are currently using this drug and receiving benefit from it can continue to get it. We cannot, however, mandate that this be done. We strongly encourage patients taking this drug to talk to their healthcare professionals if they are concerned or have any questions. We also encourage professional societies to talk to their members to communicate this important information. We want healthcare professionals to be prepared and to discuss alternative treatment strategies for this important patient group. Best regards, Drug Information BLS Division of Drug Information Center for Drug Evaluation and Research Food and Drug Administration For up-to-date drug information, follow the FDA's Division of Drug Information on Twitter at FDA_Drug_Info

We think this is what started my daughter's issues as well. She fell in her bathroom and sustained a fairly serious concussion. Her autonomic issues started about 1 month later. Our current endo believes that she damaged her hypothalamus when she fell and her sympathetic nervous system doesn't work properly. Interestingly, she doesn't seem to have POTs so much as NMH - low blood pressure that drops a lot lower upon standing. Her capillaries also leak - almost continuously, although its been a touch better with the meds she is on. What is super weird in her case is that because of the leaky capillaries, she "swells", between her mid-thighs and chest. i am assuming this is fluid leaking out. Every once in a while, when she is super excited, relieved, angry - intense feelings, she gets an adrenaline "rush" and all of those capillaries close up, the swelling/edema dissipates over like a half hour and she pees out a lot of water for 4 or 5 hours. Then she's tiny! This can stay for a couple hours or a couple days, but invariably her capillaries start to leak again and she reswells. Her catecholamines were low/low normal lying down and didn't change at all on standing. Her endo thinks that she has sympathetic denervation? She also tested low for growth hormone and is on GH replacement, which does seem to help a bit. All of this from one tbi, so i think that a relationship is absolutely possible.

I bumped this up from another thread but it was suggested that i put it in a new topic in hopes that someone else has/or has had/or seen this problem. My daughter's main issue is swelling. I'll just copy my original post below, but if anyone has this and has had any luck understanding what is causing it or has any suggestions for help with it, that would be terrific. We are so fortunate in that the medications really have helped a lot of the rest of my daughter's symptoms. Its not perfect, but she has some of her life back, can do some activities and go to school. The swelling is baffling though. Sometimes the meds really help. Other days, like yesterday, she might as well not be on them. Its hard because she gets so down about it (like a lot of teens about their bodies). Thanks so much. "I wanted to bump this up to see if anyone has experienced the number 1 symptom that my daughter has. She has been diagnosed (finally) with orthostatic hyotension but not specifically with POTS. Her blood pressure without meds is pretty low lying down (90/65? ish) and standing is 60/40 with a rise in heartrate of usually about 20 bpm. When she was originally diagnosed, they tested her catecholamines both lying and standing and they were low in both with virtually no change to the standing position. She has low norepinephrine, averagely low epinephrine, and no detectable dopamine. For whatever reason, she also makes 0 (that would be zero) aldosterone. All of this started after she fell in her bathroom and hit her head, although i suspect she may have had some problems beforehand - thus the blackout and fall. Our endocrinologist called it sympathetic neurocirculatory failure and also mentioned bradbury-eggleston. The biggest, strangest symptom she has had though, is a "generalized" edema that affects mostly her butt, thighs, stomach and for some strange reason her breasts. When she's really swollen/retaining a lot of fluid, her face also gets really puffy. It is definitely improved since they put her on florinef, midodrine and dextroamphetamines, but by no means controlled. Whenever she is tired, stressed or exercises, its like she's not on the meds at all and her body swells - a lot. Because she tries to stay active to avoid deconditioning, and because she was/is an athlete, she ends up carrying approximately 10 pounds of water around constantly and it makes her really uncomfortable. We have been told that the norepinephrine that she lacks is important for vasoconstriction and i am assuming this is where her problems lie, but in all the reading i have done on these boards (love, love these boards), i haven't seen too much mention of this kind of edema. Does anyone else have this? If so, do you do anything that helps, or have you been given anything that helps? Thanks so much."

I wanted to bump this up to see if anyone has experienced the number 1 symptom that my daughter has. She has been diagnosed (finally) with orthostatic hyotension but not specifically with POTS. Her blood pressure without meds is pretty low lying down (90/65? ish) and standing is 60/40 with a rise in heartrate of usually about 20 bpm. When she was originally diagnosed, they tested her catecholamines both lying and standing and they were low in both with virtually no change to the standing position. For whatever reason, she also makes 0 (that would be zero) aldosterone. All of this started after she fell in her bathroom and hit her head, although i suspect she may have had some problems beforehand - thus the blackout and fall. Our endocrinologist called it sympathetic neurocirculatory failure and also mentioned bradbury-eggleston. The biggest, strangest symptom she has had though, is a "generalized" edema that affects mostly her butt, thighs, stomach and for some strange reason her breasts. It is definitely improved since they put her on florinef, midodrine and dextroamphetamines, but by no means controlled. Whenever she is tired, stressed or exercises, its like she's not on the meds at all and her body swells - a lot. Because she tries to stay active to avoid deconditioning, and because she was/is an athlete, she ends up carrying approximately 10 pounds of water around constantly and it makes her really uncomfortable. We have been told that the norepinephrine that she lacks is important for vasoconstriction and i am assuming this is where her problems lie, but in all the reading i have done on these boards (love, love these boards), i haven't seen too much mention of this kind of edema. Does anyone else have this? If so, do you do anything that helps, or have you been given anything that helps? Thanks so much.

K's Mom; The semi-seizure, staring into space, we have never had. The stomach, constipation, and weird ill-health things - absolutely. The endocrinologist we see now thinks that while what my daughter has was worsened by the concussion, those things indicate problems from a long time ago. I don't know enough to tell you more but he has told us that my daughter's sympathetic nervous system is definitely affected and the parasympathetic, possibly.

Hi. This is also my first post here (although i have lurked for a month or two) - and this board has helped me so much. My daughter has a similar story with a few differences. She just turned 15 and is a competitive figure skater. She had some trouble starting 2.5 years ago passing out when she stood in the morning. During one of those episodes, she hit her head in her bathroom while falling and ended up with a level 2 concussion and her life changed dramatically. She had several months where her body wouldn't hold on to fluids. She went to the bathroom all the time and dropped 7 or 8 pounds of water immediately. I was told later (much later) that this was probably an ADH deficiency from the blow to the head. Once she recovered and was able to start to skate again, we noticed that with any exercise she would "swell" - full body edema triggered by exercise or heat or sometimes anxiety. Then she would slowly deswell over a period of a few hours. And then she gradually started to gain permanent water weight. We cycled through a number of doctors with no success anywhere. We saw a cardiologist, kidney specialist and got nowhere except "your daughter must be stressed out since this happens when she is anxious". oi. A year ago April, her whole body shape changed. In 2 days. She swelled up a further 10 pounds. Her joints just stopped working. She sweated profusely all the time, no matter what she was doing. She had stopped passing out in February of last year, but she was exhausted. Her breasts also swelled - 2 plus cup sizes, much to her dismay as she is an athlete. She was also tremendously "foggy" brainwise. I spent the next 6 months taking her to different doctors with no luck. We even tried a neurologist at the big Children's medical center where we are but he was beyond rude - simply telling us she must be a "stressed out teenager". When i asked him if it was possible something had happened to her from the concussion, he pulled up the CT scan they had done a week after her fall that showed no bleeding and said there was nothing wrong. At one point, i even thought she might have Cushing's disease. She seemed to have some of the symptoms - weight gain, facial flushing, trouble sleeping, small stretch marks across her chest. I took her to a well known doctor in Los Angeles who was concerned because her afternoon and evening cortisol levels, while not super high, were higher than one would expect and her morning one was quite low. She didn't end up having Cushing's, but they did find a 4mm adenoma on her pituitary. Finally, by pure accidental luck, i took her to another endocrinologist in Dallas (where we live). It took him precisely 20 minutes to figure out what was wrong with her. He took her blood pressure and heart rate lying down, sitting and then standing (poor man's tilt table test). His eyebrows shot up and he said "sit down, now!". He then had us stay and very methodically drew blood to test her catecholamines. He seemed to really know what he was doing. They had her change into a gown, put an iv in to draw the blood so they didn't change the results when drawing the blood, and had her lie down for a long time. They drew the blood lying down and then standing. Her catecholamines were low lying down (like 250 total with no dopamine and very low norepinephrine) and went up a whole whopping 30 points when standing - not doubling as they should. We were told she had orthostatic hypotension, most likely because her hypothalamus has been damaged from the blow, possibly also due to an autoimmune response (she also has celiac's so he thinks autoimmune may be playing a role) and she isn't producing very much norepinephrine at all. He suggested that her capillaries are staying open from the lack of norepinephrine and that is why she "swells", fluid leak into tissues, and why her blood pressure drops. He also tested her standing aldosterone levels (0 - he was shocked and said he hadn't expected that). So, we don't fully know why this has happened, but at least, after almost 2 years of doctor's telling us she needed to "relax", we are starting to understand some of what is wrong. Some of this is definitely damage from the fall (since the water retention and fatigue started right after) but i think some she has had for a while (constipated since the age of 5 which now seems resolved with meds). Your story caught my eye because your daughter is close in age to mine, and that's where my daughter started passing out first, was in the bath/shower. Also, the muscle/joint aches seem similar too. My daughter is flexible due to the skating but not hyper flexible as it sounds as though some with EDS are so i don't think that is our issue. The medications they have given my daughter help, but whenever she is tired, stressed or doesn't sleep well, it seems she might as well not be on them. She is still trying to be active and skate and when she isn't exhausted from studying for finals, she does ok. We have not gone to an autonomic dysfunction clinic yet and i don't know if we need to for the moment since we have now got quite good care, but as others said, that might be a good idea as a place for you to take your daughter. Our endocrinologist has been the primary doctor for this and as i said above, he is a marvelous man. 50 percent of his practice is reproductive endocrinology but the other half is "exotic" endocrine disorders (and he seems to see people from all over the country) and while it seems like a lot of dysautonomia falls under a cardiologist's realm, he seems to know an awful lot about it so perhaps it has or can be under an endocrinologist too. Either way, he is extremely nice, listens brilliantly (our first appointment went 3 hours), takes all after hours calls to his personal cell phone (we haven't had to use this but i was astonished that he did it) and really knows his stuff. After our first appointment he gave us each a hug and said "we will figure it out and do our best to fix it". He is in his 60's i do believe and apparently spent quite a bit of time at the NIH. I am unsure of the rules about posting doctor's names, etc. but if you would like that information as you are in the south, i would be more than happy to send it to you. I had planned on posting earlier to see if anyone had experienced some of the symptoms my daughter had, particularly after any kind of head trauma. Her symptoms seem to change (for example she stopped sweating completely this winter after sweating profusely all the time for months), sometimes better sometimes worse. It was like her system went haywire last year, and then shut down. Her joints don't ache anymore and don't feel "dry" but she does get crushing exhaustion if she does too much. She doesn't pass out (that stopped without meds by the way) so maybe this is something that eventually will improve a little bit. The doctor has her on midodrine, florinef, dextro-amphetamine (which really has helped a lot) and a beta-blocker. Take care.