Aquadiva

I was told by the lab tech that my daughters 24 hour urine did NOT have to be refrigerated. This is contrary to everything I have read. Have any of you had this done for POTS and did you need to refrigerate it? My daughter already thinks this is the most ridiculous test--I don't know what she would say if I told her she had to do it over! I am a bit untrusting as I was also told by the people that are going to do the catecholamine test in the endocrinology lab that she could continue taking her beta blocker, but the dr. said not for 2 days before. Sure am glad I asked instead of getting a false reading and having to retest!!

Wow, it is unbelievable what you went through! I am curious as to what antibiotics you were on and for how long before you got to that point. Also, not to be disrespectful, but you indeed did have "colits" by the sounds of it, but not ulcerative colitis. Ulcerative colitis is an inflammatory bowel disease that is an autoimmune disease and not caused by antibiotics or bacteria. Often times people get them confused. Colitis is curable, where ulcerative colitis is not. I have known of many people to be put on antibiotics for ulcerative colitis and Crohn's Disease to try to help control the inflammation. It isn't the first line of treatment used, however. I agree that we need to be very carefule with antibiotics, but on the other hand, they have saved many lives. It can be in the manner they are used, as you stated, that can really cause problems. I sure hope that what happend to you is a very rare thing as it sounds very scary and obviously life threatening. SO happy you were able to get things under control, but it sounds like it was a long, rough road.

Hey Aquadiva- Mack has severe GI issues too (not UC): severe GERD and small bowel dysmotility. He takes lots of meds for the GI stuff. Most importantly, he takes a hefty dose of probiotics (2 Culturelle) daily to negate any negative side effects from the antibiotics. Probiotics have to be taken apart from the antibiotics. So, he takes one 50mg doxycycline in the AM, probiotics when he gets home from school, and another doxycycline in the PM. So far, no negative reaction for the antibiotic....not sure how much it's helping... He's "stable-ish" for him during a very difficult time at school- finals, etc.. Fatigue continues to be his biggest issue. The way I understand it, antibiotics kill off good bacteria in the GI tract. In order to have a healthy gut, you need a balance of good and bad bacteria. Probiotics add the good bacteria back as long as they are taken several hours after the antibiotic. Mack used to have bacterial overgrowths in his GI tract, that's when the bad bacteria takes over. Since taking a daily Culturelle (2 since the ant-B's) no more bacterial overgrowths. Just a thought in case her doc ever wants to try antibiotics. BTW, I have every sign of chronic inflammation and no laboratory markers are abnormal for me either. Julie Thanks Julie. She has been on antibiotics since dx without issues for illness and she takes doxicycline too, twice a day without problems. I believe some antibiotics are worse than others. But, she had C-Diff when she was hospitalized (after a round of antibiotics) and I believe once you have had it, it can come back easier, especially after antibiotic use. C-Diff can be VERY nasty and hard to get rid of. With her body already wanting to attack her colon with "normal" bacteria levels, I get a bit nervous whenever she is on them. She has been in very bad shape and we don't ever care to go back! But, if antibiotics were shown to improve POTS symptoms, I would seriously consider! I know of a lot of people that are on Culturelle and similar probiotics for UC. We have just never tried them as she was so bad when it all first started, and went with the strong meds and they are working wonderfully. Wish there was something we could find that would work as well on her POTS!! She has done yogurt before when on antibiotics, but it probably wasn't enough to do much. I hope you have a doctor that understands you are "special". It drives me crazy when all they look at are the numbers. Luckily, her GI is WONDERFUL that way. She has "seen" it with her own eyes. She is amazed at how good she can appear on the outside and what a mess she can be on the inside at the same time. Unfortunately, though, because we can't rely on the numbers to tell us anything it means frequent scopes, which are no fun. I really feel that is why the rheumatologist didn't take her seriously--because all her inflammation #'s were fine. Then WHY all the pain and swelling???? It would be interesting in deed to see more on inflammation and POTS!

Interestingly enough, my daughter can have severe inflammation and have NO elevated inflammatory markers. She has UC, and the labs have NEVER told us she had inflammation, her CRP and SED rate have been normal. In fact, in the beginning, they told us the GOOD NEWS was that she didn't have inflammatory bowel disease. That was going by her labs. Never mind she had bloody stools, fatigue, and anemia. They said that it was likely something she picked up such as a bacteria or something even though stool studies showed no bacteria. Only after things got really bad did she get referred to GI and they did a scope/biopsies and tested to be ANA positive along with inflammatory bowel disease. She is never even "normal" abnormally!! I would be VERY intersted to see if an antibiotic could help her feel better. But, with UC we also need to be cautious with antibiotics.

She tried Ritalin and that didn't help. She wanted to try Adderal and see if that may be better, but her doctor said no. She is really struggling right now with all the papers that are due. I know I should be greatful that she is able to still go to school, but I am so frustrated with doctors that won't prescribe medications that have shown to help POTS patients. It is so hard to sit back and do nothing when she is suffering and there may be help available. Today was a rough day for her.

What questions should we be asking? She is currently taking metoprolol. Not sure if it is helping with symptoms much or not. She doesn't want to do the tests that have been ordered (endocriniology tilt test, regular TTT, and 24 hr urine) because she is so tired of dr. appointments and tests and she would have to miss some school. She is stressed out about school right now anyway, and adding more right now doesn't seem like a very good idea. She also said school is almost over, she doesn't think they are going to do anything that will help before year end and she doesn't care if she feels like crap this summer anyway. So, I am going to ask: how postponing the tests a month would affect her treatment/outcome what will be done differently as far as treatment goes based on the results of the tests if there is anything we could try in the meantime to improve her fatigue and poor concentration Anyone else have any ideas of questions to ask?

My daughter is seeing an adult POTS specialist on Monday and I am wondering what drugs you guys have found to help with concentration and/or fatigue.

My daughter who is experiencing a POTS flare has had this happen this go-around also. She gets very painful calf cramps. Hopefully we can get the POTS to settle down and then her calves will as well.

I think so, initially, but I am not so sure anymore. They pushed the routine with good sleep patterns, exercise, diet, etc. The child suffered from chronic pain that they couldn't explain (also has IBD and had colon removed), and I do recall it helped right away when they were still doing everything, but I do know that they still have pain. They thought it was a great program, but the parent was a bit disappointed as most were older teens and had other behavior (teen) type issues that didn't pertain to them and felt too much group time was centered around that. I almost got the picture that it was mostly a self-discipline/behavior modification type of program. Where they teach you how to be good to your body, more or less, and in turn you feel better and have less pain. That is only my interpretation, and I didn't participate, so I am going by what I was told by the parent that went with their child. I sure hope you find some help from it if you go--AND that your insurance pays for it.

My daughter was ON Remicade when she was dx with POTS. She has had other issues such as costochondritis, back issues, an inflamed toe, etc. while on Remicade as well. So, it was a mystery to me how she could have this other inflammation while on Remicade. I really suspect some connective tissue problem, but they haven't come up with anything. They just keep saying it is "probably" from the inflammatory bowel disease.

My daughter has IBD (ulcerative colitis) and is on Remicade. Past meds of asacol, prednisone, and imuran (6mp). POTS dx about a year and a half after UC.

I know of someone who went there for chronic pain. Said there were a LOT of POTS people there. That particular one was for kids, though, and was in Rochester.

Issie, how long until things improve after a fright induced flare for you?

It just made sense to me. This is what happened.... She was taking a shower before school one day. My husband and I were already both at work so she was home alone. We live in the country. When she was in the shower, someone came and banged on the bathroom door really loud. It totally freaked her out. Then she heard someone walking upstairs, but no voices. She stayed in the shower for 15 minutes too afraid to come out. Then she thought, if they were going to kill her, they would have done it by then, so she decided to get out of the shower. Poor thing! So, she mustered up enough courage and came out of the bathroom. Her brother (who hasn't lived at home for 3 years and is now married) was still there thinking he was pretty funny. I was afraid that a little prank between siblings might have caused her POTS to flare, but as I said, I don't want my daughter to hold it against her brother or for him to feel badly, so I don't know if I will mention it to the dr. or not.

Sorry for the rush of questions, I finally have a few minutes! What I am wondering is if anyone knows if getting really scared can trigger a POTS flare. I just wish I could remember the exact order of events, but my daughter got REALLY scared about the time that her POTS came back. Could this be a trigger? I am afraid to even ask her Dr. in front of her because it was her older brother that did it to her, and I don't want her to "blame" him for her recent difficulties. He meant to scare her, but certainly didn't mean to cause this. The "fight or flight" mechanism is what I am thinking about.

My daughter has been scheduled for one. Can anyone tell me what they found out by taking the test? Did it direct what medication would help? Or is it just worthless information with no treatment options? I mean, we know she has POTS, but are looking for treatment not just details on what is happening. Thanks!

My daughter started on propanolol and said it made things worse. She is now on metoprolol and thinks it works much better for her and I don't think she has any side effects from it. Just goes to show everyone is different.

I have actually asked the pharmacist that filled an rx in the past what the exp. date is on the manufacturer container and have been told and made a note for myself. I don't know how many would be willing to do this, though. They are required to put one year on the rx regardless of what the "real" expiration date is.

Oh, good, glad to hear it!!! I just thought it was on here that I had heard that she had, sorry for the misunderstanding. I am happy to be wrong!! I called a couple weeks ago and they did receive my daughter's records, but NO contact information. Nothing. They said they were glad I called. My daughter has an appointment with another POTS dr, so hopefully that will at least get us somewhere in the meantime. Time will tell! And, I have thought about calling and asking where we are on the list thinking maybe they would get tired of hearing from me and offer an appointment sooner rather than later.

It was just confirmed that my daughter is also vit. D deficient. May I ask what kind and how much vit D your son takes? I got the liquid gel 2000 iu. I figured the liquid would be better than the tablet?? I am so glad to hear that your son has seen improvement. That is great! Any little bit we can get our kids helps!! May I also ask what other meds your son is taking? We are currenlty trying to find something to help my daughter with the fatigue/dizziness/headaches, but the PCP has been reluctant. We are waiting to get into the adult POTS dr. She is 17. Right now she is only taking metoprolol for POTS. One thing that really frustrates me is that her ped brushed off the idea of vitamin D (I asked specifically) saying there has been so much "hype" about it lately, and apparently she doesn't agree. But, if she is low, what can a supplement hurt? Another specialist ran the test for us and they will recheck in 3 months.

My daughter has an appointment with the ADULT pots dr.! I am so happy, I just hope it turns out as good as I hope! He is ordering another tilt table test and a 24 hour urine so far until he sees her in a few weeks. Have any of you had repeat TTT done and were the results any different? How about the 24 hour urine? What are they looking for with that?

It was a sports medicine doctor that originally suggested accupuncture so that was who I asked about manual manipulation. There are 2 doctors in PM&R that do this. Can't remember their names offhand. The sports medicine dr. is a D.O., and one of the doctors in PM&R is a D.O. and one is an M.D. The dr. that did the accupuncture was an M.D. Not sure when you saw the dr. that said that to you, but Mayo's view on alternative or "complimentary" medicine has changed over tha past few years, and I don't think they even acknowledged it years ago. You are maybe correct in referring to the "training" of the manipulator. I will let you know how it goes. We aren't really looking for relief from POTS, although that would be wonderful, but more for the aches, pains, and muscle knots from what could be fibromyalgia. Who knows, maybe he can help ALL her issues!

Not to throw any fuel on any fires here, BUT I just TODAY made an appointment at MAYO CLINIC for my daughter to get manual manipulation for her POTS and possible fibromyalgia at the recommendation of a very well-known POTS dr. I am NOT a usual believer in alternative medicine, but my daughter has also found pain relief from acupuncture when steroid injections, iontophoresis, electrotherapy, ultrasound, celebrex, dolobid, flexeral, and who knows what all else did not help. She got her acupuncture at the Mayo Clinic as well. Mayo doesn't consider it "alternative" medicine, rather "complimentary" medicine. And, the dr. that did the acupuncture told us right up front it only helps SOME people. We were VERY happy when our daughter finally found relief of her terrible back pain that the pain clinic, rheumatology, sports medicine and anesthesiologists couldn't help. I say that anything is worth a try, when done by a licensed professional, and just like medications, what works for one person may not work for the other. We are very excited at the thought of maybe finding some relief with manual therapy. If we are lucky and it works, she will stick with it, if it doesn't we won't waste our time, but I will be happy that it can help others.

Anyone know if they are available in the US?

Sorry, UC is ulcerative colitis.