kjd111

Hi. I haven't been on the boards in a while, but my daughter has been using Octreotide for about 10 months now and it has been wonderful. She has orthostatic hypotension caused by some sort of leaky capillaries/blood vessels. She also fits the description for Pots, but it is more likely driven by the blood pressure drops than POTS on its own. This was the best medicine for keeping the fluid in her bloodstream where it belongs. She takes it in the morning and at night before eating. She actually has a prescription to take it 3 times a day, but we found the dose too high and it was just too frequent. She also had some GI upset for a couple of weeks. It really helps keep her blood pressure up after eating, which was a major issue for her too, and the Octreotide in combination with midodrine, florinef and dextroamphetamine has given her some of her life back. She was a competitive figure skater and while she can't do that anymore (and is very sad about it), she swims some, does some working out to try to stay conditioned, and is in school full time and in AP classes. I would say that for her, while the other meds helped, the Octreotide was the best.

My daughter had a terrible time after eating - she would get dizzy and nauseous frequently. When she was put on Octreotide, it helped enormously with this. She wasn't actually put on it for this reason, but the whole sick after eating thing went away immediately. She has NMH, not POTs per se. We just got back from Mayo and they confirmed for us that the Octreotide was probably helping her a lot.

Thank you so much everyone for your replies. I knew i had read some mixed reviews somewhere about Dr Renaud, so that was why i was asking. We are going to go we have decided. The only good news is that we have our autonomic dysfunction diagnosis and treatment regime already. I think i might be more worried if we were going up there and hadn't. Its the issues she continues to have with just using her brain for things like the computer or TV or studying that then turns around and makes all the autonomic stuff so much worse. I'm not sure what can be done about something like that 3 years after the injury - my guess is probably not much - but i'm willing to try for her sake. Because we have a treatment plan that works fairly well, we feel so blessed to be where we are.

Does anyone have any experience with Dr Renaud at the Mayo clinic? We have an appointment next week and i'll be honest, we are wavering a little about whether it is worthwhile to go. My daughter has already been diagnosed with orthostatic hypotension due to hitting her head almost 3 years ago during a fall. She is "hypoadrenergic" - her body basically doesn't respond with catecholamines or cortisol while under stress. We have a very good endocrinologist here in our city who sees my daughter and he has her on a cocktail of medications, of which the last - Octreotide - has been quite useful. She is very fortunate in that she can go to school and have some semblance of a normal life - but she still can't mix exercise with brain activity of a strenuous nature on the same day. If she studies a lot, she's toast. Her doctor has tried to get her into a pediatric neurologist where we are, but she is past 16 and so the ones here won't see her, and she is not yet 18, so the neurologist he wants her to see won't see her either. She continues to have a lot of trouble with her head - if she is on the computer a lot or studies a lot, the whole norepinephrine response (or lack thereof) gets even worse and at night her brain then won't go fully to sleep. 3 years on from the accident, this seems like it has plateaued out. I thought maybe the Mayo clinic would be a good place to have her seen by a neurologist who knew something about autonomic dysfunction, as that is what we have - a head injury causing autonomic dysfunction. But i worry that maybe there isn't much that can be done and we should just leave it. Its a long way - we are in Texas. Has anyone seen this dr? Was she worth the trip? Thanks so much.

My daughter had a swelling problem too - it was one of the first symptoms we noticed. She swelled less in the feet and lower legs and more in the center of her body. What we finally found, after 2 solid years of looking, is that her body doesn't produce epinephrine, norepinephrine and cortisol when it is under stress - any stress, physical or mental. There isn't enough norepinephrine to keep her blood vessels closed when she stands, and so when she's upright fluid leaks into her tissues. It has taken years, plus finding a terrific doctor who had suspicions and knew what to look for. She has orthostatic hypotension and her bp is always low, even on meds. But, it is so much better. She takes midodrine, dextroamphetamine, florinef, indomethacin and octreotide and a few others. Its not a cure, and her body still swells when she's hot, stressed or active, but nothing like before. She has slowly dropped almost 15 pounds of water.

I will second the blood pressure measurement not always correlating with how they feel comment. I remember many visits to our endo last year as we were sorting things out, where he would do the blood pressure lying, sitting and standing and there really wasn't too much drop compared to where my daughter had been before as he had started her on a whole host of things to keep it up. BUT, she was really struggling - thus the reason we were there. We just had a 'checkup' type visit where her blood pressure definitely dropped again on standing, which it hasn't done in a while (i think to 80/60) but she's had a couple week run here where she's been ok - for her. My daughter is also on midodrine and my advice to you, unless your daughter has really bad reactions to it, is to stick it out if you can. The trick is to try to be consistent with the meds, so her body can try to adjust.

My daughter was on SSRI's for a while right after she got sick, but before we knew that she had NMH. They made things much worse for her. I think it depends on what is driving the POTS/NMH. In hindsight now, knowing that my daughter doesn't have enough norepinephrine and her body doesn't constrict the blood vessels well at all, SSRI's were a terrible choice. We weaned her off them, but probably faster than one should. She had bad withdrawal for a while, but nothing like what i have read about from others - thank goodness. I think any drug that alters the activity in your brain warrants careful thought before trying. I understand they are a great help for some though.

Our endo did the catecholamine test first thing after deciding he: 1) didn't like her color and 2) discovering she had a pretty low bp sitting down. He asked us if we could spare the rest of the afternoon and we said we could. So they ran an iv line in first to draw blood (so the needle from the draw wouldn't change the readings). Then they put her in a dimly lit room for about 40 minutes lying down. Then they drew the "lying down catecholamines - dopamine, epinephrine and norepinephrine. Then they stood her up and a minute or so later took the standing blood draw for the same. They also drew for renin and aldosterone. Her catecholamines came back low/normal lying down. The range for standing appears to be approximately double or maybe a touch more, that of lying down. The total between the 3 lying down for my daughter was 242, with no measurable dopamine. The total standing went to..............270, also with no measurable dopamine. The renin came back in the low 2's and aldosterone less than 1. He told me he suspected from the symptoms and history that the catecholamine issue was there - although it was worse than he expected. He was really surprised about the aldosterone though. I think he initially suspected just a catecholamine issue. In fact, he told me he was so sure that was it he started her on midodrine before he got the results back. When they came back, he added the florinef. He started on a really low dose of midodrine and, unlike a number of people here, she had no side effects, but not a very large effect from it at all. Since then, the doses have ramped up a lot and they have helped. He has added in a lot of other medications too - some at my prodding but many on his own. He really is the nicest man. When he called to give me the results of the blood tests 4 or 5 days later, I commented that my daughter was somewhat disappointed there was only a little lift from the medications. He said in his most gentlemanly southern drawl ( he is a wonderful, older man), "well, its like adding salt to beans...you've got to go slow so you don't add too much". It is my favorite line from him ever. I don't think she will ever be 'cured' but she is so much more functional (honors classes at school, limited athletics) that I will be forever grateful. It took us almost 2 years to find him and he ended up being in our back yard as it were.

Thanks so much everyone to some of the responses to my earlier post in this thread. This adrenal function thing seems to be so tough for the doctors (although i'm not sure i know why as its supposed to fall in an endo's area.........). What I had found through research at the time is that if things like ACTH and cortisol are low, then it could be a hypothalamus issue, rather than pituitary or adrenal. That certainly seems like it may be the issue in my daughter's case. The endo who did the ACTH stim test for us (not our current endo) was at a major pediatric hospital in Houston. It was one of the first things our current endo remarked on when reviewing her records - "that's not exactly doubling". I think the reason he hasn't pursued it harder was that the low and non-responsive catecholamines were a big/potentially bigger issue at the time. He's fiddled with that one quite a bit and she is so much further along than she was. But i've always wondered on this cortisol thing. Its a mystery. A morning cortisol of around 10-12 isn't outside the range. But...........she doesn't produce more when needed. I do know that the 24 hour urine is not indicative of Addison's, and not usually used as a test. However, I will say that our endo believes it can reveal a lot and for it to be a 3 on multiple occasions is not right. My daughter can exercise now but she is always so 'weak' compared to where she was before and it makes her SO frustrated. Trying to figure out how to bring this one up again at our next visit this Friday.

My daughter appears to be in that category of occasional ptosis from insufficient/extremely low norepinephrine. Since her body doesn't 'respond' to stress (from the concussion) she gets no increase in norepinephrine when she needs it - what she gets comes from the medications she's on - and so its a 'finite' bucket. When she's used it up (activity, studying, stress), her eyelids droop. Its the only time it happens.

Fascinating article from the Daxor site. Thank you for posting. My daughter had this test done at Dr. Stewart's orders. I know i've posted elsewhere, but her blood volume was down 22% and her red cell volume down 29%. He was shocked. She came off the florinef for 3 days before the test, so she did it medicated with midodrine and everything else, but not florinef (although i think it takes a while to get out of one's bloodstream). I've often wondered if she isn't on a high enough does of florinef..........

Petuniasmom - It took us 18 months to find a doctor who could diagnose my daughter's issues, so the lesson is never, never give up. I took her to some of the best neurologists and endocrinologists I could find in the US and it was a "let's just try this guy and see" appointment with an endo in our own city that was the breakthrough. He figured it out in about 20 minutes because he'd seen it before. Dysautonomia can cover so many things. Its a syndrome of issues, not a disease per se, and it can also be caused by a lot of things. Our doctor told us the story of another teenage girl he treated, who had been so sick with this problem that when she got up in the morning she had to literally crawl around the house for a few hours until she could stand up right. He actually suspected my daughter had this issue by her low standing bp and her color (grey). Then he did the "poor man's ttt" and drew catecholamines lying and standing and voila - the answer. Zero response to standing with the catecholamines, no aldosterone to speak of and a huge drop in bp. My daughter also had a lot of Gi issues that had gone on forever unexplained. She didn't vomit or anything but she literally couldn't go to the bathroom and her bowel movements were like rabbit pellets they were so dry and hard. The midodrine helped her orthostatic hypotension, and the florinef in particular was also helpful, but it wasn't until he put her on dextroamphetamine that the GI issues literally disappeared. it was amazing. All of these types of things are connected. My daughter has very odd sweating issues. Sometimes she sweats out of proportion to what should be, sometimes not at all. Her sympathetic nervous system doesn't respond to any kind of stress (physical or mental) - most likely due to the concussion she received at 13 when she fell in her bathroom. Its like there's no on/off switch. So, don't give up. Just go find someone who knows this area well. Almost 2 years later, my daughter is a little better. Not because she's healing or anything but because we were persistent. Last fall, I talked her endo into letting us go get a blood volume test because her hematocrit was consistently low. She is missing 21% of her blood volume and 29% of her red blood cell volume. They were astonished!! He has her on procrit for that and it does help a little. I also took her to just about the best Pediatric GI doc in Dallas (where we are) - great guy. I brought all her autonomic function testing and talked to him beforehand. He studied up on the autonomic dysfunction beforehand and agreed to try her on octreotide - the main reason I went there. For us, the octreotide has been incredible. One of my daughter's main problems is that her blood vessels and capillaries are perpetually dilated because her sympathetic nervous system is so non-functional. She "leaks" fluid constantly into her tissues - all over her body but a lot in her midsection. Her bp drops a lot after eating. The Octreotide injections have really, really helped this. We are so grateful for both these 2 doctors and for them allowing me to push them into continual experimentation with the meds until we found some things that gave her 'most' of her life back. I say most because she was a competitive athlete and I am not sure she will ever be strong enough to compete again, but she can run a little now and workout and is in school, in honors and AP classes and doing really well. Her brain gets tired from the studying and then the meds don't work nearly as well (like a finite bucket from the meds - when she's used it up with one thing, its done - not dynamic or reactive to her needs at all), but i think it is the best we can do for now. Kate

My daughter's aldosterone was less than 1 (essentially zero). Her morning cortisol ranges from 7 to 12. Her morning ACTH was an 11 if I remember correctly. The one time they did a stim test, they allowed her to eat and walk around so our current endo said that's no good. She went from an 8.4 ish to 15. The really baffling thing has been her 24 hour urinary cortisol (which has been done twice) was a 3 both times. They have tried her on HC and Prednisone and she got a bump from the Prednisone but not the HC, but the Prednisone made her really anxious. Her catecholamines respond not at all to upright posture (245 to 272 with standing). She has tremendously low blood volume as well as OH and only mild POTS. Her condition may be slightly different from some folks here though as her troubles all started after a fall and blow to the head.

"There has been a study done by Dr. Raj showing that people with POTS are shown to be deficient in renin and aldosterone. Renin-Aldosterone Paradox and Perturbed Blood Volume Regulation Underlying Postural Tachycardia Syndrome (Circulation -Journal of the American Heart Association - 2005;111:1574-1582) The conclusion of the study being that the POTS patient has paradoxically unchanged plasma renin activity and low aldosterone given their marked reduction in plasma volume. Also, they have a significant red blood cell volume deficit, which is regulated by the renal hormone erythropoietin. These abnormalities suggest that the kidney may play a role in the path physiology of POTS" It is interesting to me how everyone could be suffering from a lot of the same symptoms, but have different causes. This article from Dr. Raj really struck home for us. My daughter's problems are similar in manifestation to everyone here, except she has more NMH than POTS. Because her issues stemmed from head trauma, she has low everything: inappropriately average renin, non-existant aldosterone, low/avg norepinephrine lying down with zero response on standing, low cortisol and interestingly no cortisol response (elevation) to stress. She had a formal blood volume test and falls right in with the people from the above study - 21% blood volume deficit, 17% plasma volume deficit and 29% red blood cell deficit. When she first got sick after the concussion, her blood was so thick that it would take a tech forever to draw it. She was often dizzy and unstable for days after a blood draw. I guess she is hypoadrenergic all around. Instead of a hyper response, what we have going is no response to upright posture, stress, anything. For her, florinef (aldosterone) works wonderfully. When she had to go off it to see Dr. Stewart, and we only came off for 4 days for the blood volume test, she felt terrible. Makes me wonder if her dose shouldn't be higher. I will say from personal experience with her now, the kidneys absolutely play a role and are affected - at least for her. Her hematocrit is low and her red blood cell count is also low. She has very little peripheral resistance throughout her body and her blood vessels and capillaries don't constrict with upright posture. They can still, but she has to have a very strong emotion of some sort to drive it - anger, fear, excitement. Its like her on/off switch is broken and only works for half an hour or so on its own if you "hit it" with that strong emotion. Her blood vessels constantly "leak" fluid because they don't have anything that sends the norepinephrine to constrict, so she gets edema - frequently. She was started on procrit (erythropoietin) in December as well as Octreotide. On top of the midodrine, florinef, dextroamphetamine, etc that she was already on. All of the latter work for her but the procrit has been one of the best for giving her a little more energy and the octreotide has been amazing at helping to somewhat control the fluid leakage in her midsection. Its not a cure, but it has definitely helped. So now she has a small "bucket", as i tell her, of the things her body needs to respond to the body's stress, but unlike folks who aren't sick, her bucket doesn't expand when needed. It has only what the drugs give her. So, on days that she studies a lot, or is up late, she uses up the bucket (and we've definitely learned that studying uses up a lot of that bucket) and she swells more and her body and brain work badly the next day. Even things like spending too much time on a computer, really depletes her. So, we are grateful for the slightly bigger bucket from the procrit. We wish it had a response switch but its certainly a moderate improvement over two years ago.......Just thought i'd share in case anyone else has similar issues since we have learned (and are learning) so much. Kate

I wonder if for those with hyperadrenergic POTS, the bp drops after eating and then the body goes a little nuts and send out way too much adrenaline and noradrenaline (norepinephrine in the US) and that is why for some the bp then goes up. My daughter doesn't have enough catecholamines, and so the blood pooled in that area and her bp went down. As one poster above mentioned, for people like my daughter, Octreotide is outstanding in this department. I think for those with more hyper POTS, it would be less clear. If you took it and it kept the blood from flowing down to the GI tract, would that prevent your body from overstimulating with adrenaline to make up for the increased blood flow there? Interesting question.