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Everything posted by dakota

  1. I agree that you might want to start on a smaller dose of propranolol. But I did want to mention that a small dose does not work for everybody. My daughter started on a small dose and worked up to 120 mg, which she has been on for several years. It wasn't until she got on that dosage that she finally stopped vomiting every time she tried to do anything. So larger doses do work and may be necessary for some people.
  2. I certainly don't know as much as many people on this forum, but I don't see why your doctor would say your TTT was "negative." Your heart rate did go up by 30 bpm. You also exhibited some typical symptoms like your hands turning purple, feeling nauseated and dizzy. You don't need to faint to be diagnosed with POTS. What actually strikes me was how high your blood pressure went. If he was testing for orthostatic hypotension, then yes, that test was negative. What did your doctor actually conclude? Just wondering.
  3. It has always amazed me when family members, who I thought would understand my daughter's issues with POTS, don't seem to get it. I had to have surgery last year and was unable to continue mowing the lawn. My brother said that maybe I could get my daughter, who has POTS, to mow the lawn. She has extreme heat intolerance and had not been able to go to school for two years. And he thought she would be able to mow the lawn in 90-95 degree weather? That's when I realized that some people will never get it.
  4. My daughter is on mestinon 60mg 3x/day. She wasn't sure if it was doing much. Then she ran out of her prescription and we had a hard time getting it refilled. She was off of it for about 5 days. She realized that it actually was helping quite a bit -- just like peregrine said, with energy and general well being. She also had a lot more prescyncope without the mestinon. We were finally able to get the prescription refilled and she believes it really does help her.
  5. My daughter had the same thing. She was pretty much unable to read a book for close to a year. She could read some if she was lying down, but not at all if she was even just sitting up. Her cardiologist finally put her on adderall and it it really fixed the whole thing. I think it is a lack of blood flow to the brain. Adderall is a vasoconstrictor and I think that is why this helped.
  6. Alaska, I understand your concern that a med might be covering up a real problem. If you have a sleep issue like sleep apnea, then I would definitely get that checked out. My daughter takes Adderall. For her, it is a quality of life issue. Without the Adderall, she couldn't read a book. It has also given her more energy. She has sleep issues, but does not have sleep apnea or any other type of problem that we seem to be able to do anything about. She does reduce her Adderall in the afternoon, as it can make her sleep issues worse. But in her case, I don't think it is covering up anything that could otherwise be fixed. Without Adderall, she sleeps poorly and feels worse. With Adderall, she still sleeps poorly but she feels a whole lot better. I also think, possibly, that she is more motivated with Adderall to get up and exercise, and I think the exercise has helped a lot. ~ dakota
  7. I don't have POTS (my daughter does), but I had PVC's and was put on a beta blocker for them. It helped tremendously and I was only on a small dose. While I wouldn't say they made me tired, they did help me sleep, as the PVC's were keeping me awake. My daughter is on a large dose of a beta blocker and it doesn't make her tired at all. I think it could be different for everyone, as one doctor suggested a beta blocker to help my daughter sleep. It does not help with that at all for her.
  8. SoliDeoGloria -- Have you tried taking the 60mg ER at night? My daughter takes hers at night. In theory, they say it's supposed to help her sleep, but it doesn't really. But if it takes a while for it to kick in for you, I wonder about trying it at night. When my daughter was on the lower non-extended release doses, she was taking them twice a day, I believe, like alex74alex does.
  9. Albrown23 -- I'm sorry to hear of your experience with the bar. From your signature, it looks like the bar was removed at the time when the tie broke, is that right? If so, was the 4 months it was in any help? My daughter's was just reattached on the one side and left in for another year. It had fallen behind her ribs, so I guess she was lucky that it didn't poke through as yours did.
  10. Mytwogirlsrox -- my daughter was checked by Dr. Francomano for EDS. Although she had many things associated with EDS, she did not meet the criteria. Dr. Francomano felt that she had MASS phenotype, which is a connective tissue disorder with similar features to Marfan syndrome. I believe that it is the connective tissue disorder that is causing her POTS. Whether she would have eventually gotten it had she not had surgery, we'll never know. I am very glad that with all my daughter has gone through so far with POTS, she is still glad that she had the surgery for pectus. As she got older, her ability to breathe was diminishing, really only noticeable with exercise. Her pediatrician had said "oh, it's just a cosmetic issue" but when I took her to the surgeon for an examination, he said it was a severe case. When the surgeon measured her, she had one inch of room between her sternum and her back. One of the main things I have learned through all of this is to listen to my instincts and not believe everything a doctor tells you. Get a second opinion.
  11. My daughter had surgery for severe pectus excavatum. It was the surgery, and subsequent repair surgery when the bar became detached and had to be reattached, that triggered her POTS. As an aside, they are currently doing trials on using magnets to pull the sternum out instead of inserting a bar in the chest.
  12. I can understand how generally a low dose would be better, but I think it doesn't work for everyone. My daughter started out at a low dose, then was increased further and further until it helped her. At this point, she is at 120 mg ER, which I believe is a fairly high dose. But at a lower dose, she couldn't stand up for long or ride in a car at all without vomiting. Now she can.
  13. I agree with i hate bananas, I think you expressed yourself very well, Edin. I am curious to see how people respond, as my daughter is in a very similar position to you, although she is on quite a number of meds. She has not attended school since she was 15. She was able to get her GED and hopes some day to attend college. Although the meds help her on a day to day basis, they have done nothing to help improve her condition. Exercise, which she has begun doing more of recently, is seeming to be helpful. But she still vomits rather frequently, and a trip outside the house for a few hours will lay her up the next day. But we are seeing an improvement. I do understand your wondering what kind of lifestyle you will be able to lead in the future, as we have been wondering the same for my daughter. One of my concerns for you is your constant headache. Once my daughter started on adderall (see had no need for this prior to getting POTS), it really helped her think, speak and read. She was an avid reader and hadn't read in a couple of years before the adderall, because it gave her such a headache as well as visual disturbances. I don't know if this might be simlar to what you are experiencing or if your headaches could come from something else. But if you are able to go, I think I would try to find a doctor to speak with about your headaches and about your health in general. Even if you are not looking for meds, I think a good doctor could be of some help. My best wishes to you, Edin,
  14. My daughter didn't have POTS before her first surgery. After her first surgery, she developed mild POTS and was still functioning, just mild, strange symptoms, and we didn't know what it was. After her second surgery, she got slammed and has had relatively severe symptoms ever since. She had a third surgery, but we knew she had POTS and she was given IV fluids prior to the surgery. Thankfully the third surgery didn't make her any worse.
  15. This was my daughter's first and one of her best meds. She started off at a low level but fairly rapidly was increased until she now takes 120 mg ER. She's been on it nearly 3 years. It is quite a high dose, but she vomits too much without it. It really helps her a lot.
  16. I am very sorry that you are going through this. My daughter went on homebound schooling in 10th grade as well. The site dynakids.org has some good information that you can pass along to the school and any homebound teachers you might get so that they will be a bit more famiiar with dysautonomia and what you are going through. I hope they will begin to work a little better with you so that you can get things worked out for your education.
  17. One thing my daughter had with her last surgery was an IV a couple of hours prior to the surgery. This was done specifically because she has POTS. I believe this really helped.
  18. Where are you located, Debbie? My daughter had her initial testing done by Dr. Jeffrey Moak at Children's National Medical Center in DC. They are very experienced with dysautonomia. She currently sees Dr. Abdallah in Virginia and we are very pleased with him.
  19. My daughter takes Propranolol 120 ER and has for about a year and a half. She started on a lower dose, but it did not work enough for her. Her current doctor tried to switch to another med, but it did not help enough and we switched back. This has been the best med so far for her. She has gained weight on it, but she needed to. She was 117 lbs at 5 feet 11. She is now about 137 and still is thin, but looks good. It is the only med that continues to work for her.
  20. Were you switching from Propranolol (I see that's in your signature line) to metoprolol? My daughter's doc tried to switch her from propranolol to metoprolol and she vomited once she switched, so we switched her back. Her propranolol dose was 120 ER and the metoprolol was supposed to be a milder med. We assumed that the vomiting was due to her heart rate not being controlled, as that is when she normally vomits. At this point, I don't know if it was that or just the med itself that made her vomit.
  21. Lissy - my fiance has sleep apnea and uses a CPAP machine. He now has WAY more energy than he did before. He looks and feels probably 10 years younger. If sleep apnea is your problem, then a cpap machine will really help you feel better. Good luck!
  22. Hi Dawn, I know this is one of the issues that we struggled with. We had a pediatrician who was completely useless, a cardiologist who thought some meds would be good for my daughter but who didn't want to prescribe them, a psychiatrist for sleep meds, a surgeon for her pectus. My daughter has now started seeing Dr. Abdallah, and I think we are going to use him as our primary source of care. BUT, we did see Dr. Francomano last spring. She asked who was managing all of my daughter's care and I said it's just me. She seemed to be very willing to be that person to coordinate things. We really liked her a lot and I think she's great, but since riding in the car is not the easiest thing for my daughter, we have not been back to see her. I believe you are closer to her, and if you get in to see her, she might be a possibility to help coordinate things for you. I know it's not easy, but it sounds like you are out there doing the best for your daughter. Best of luck to you both!
  23. I also wonder about building up a tolerance to midodrine. My daughter was taking 10 mg 3 times a day, when she was awake early enough in the day to get in 3 doses. She took it for about 6 or 8 months, then she really didn't think it was doing anything for her at all, so she stopped taking it. We didn't notice any difference when she stopped, so maybe she had built up a tolerance, I don't know. It definitely helped initially, but after a while, it just didn't seem to help any more.
  24. Hello Dawn, Let me first say that I am sorry for everything that you and your daughter are going through. You certainly are on the right track, though. My 16 year old daughter also sees Dr. Abdallah and he is the best that we have found. We were not able to get in to see Dr. Rowe either. Like Sarah, I would also recommend Dr. Francomano -- she is very good. And I also can't say enough about the people on these boards -- they are helpful, knowledgeable and compassionate. I know how hard it is to watch your child suffer through this. We are working with Dr. Abdallah to try to find a combination of meds that will make my daughter feel better. A lot of it is trial and error. What works for one person does not work for another. It sounds like you are already doing all that you can to get help for your daughter. I hope that you will be able to find things that help. I think we must be in relatively the same area. If you'd ever like to talk, just let me know. Lynn
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