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About Aquadiva

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  1. My daughter just had surgery on Monday. I'm not sure if her POTS was under very good control at the time as she was ill from another issue. However, after surgery she started to get REALLY dizzy and had vomitting. The strange thing is that it is only in the morning, when she simply raises her head or even the head of the hospital bed. She had major abdominal surgery, so throwing up and dry heaving was not pleasant to say the least. The dr's blamed medication. I think it is POTS. She will go up to 8 hours without ANY medication and she still gets sick, and takes Zofran before getting up.
  2. This is my daughter's second try with ritalin. She really doesn't see any difference when she takes it, but it has only been 2 days. No positive or negative effects. She took 10 mg the first day and 20 the second day. When she tried it before, the same thing-no benefit, no bad side effects. She tried it longer that time, but was on a beta blocker at the same time which we now believe has been making her worse. We have added this back on our own as the only other meds she is taking are bcp and fluoxetine just to see if she notices a difference. Should she notice a difference right away w
  3. Your poor daughter! How is she doing now? Well, we saw her new primary care doc and we were VERY happy with him. He is definitely more willing to try different drugs and different combo's. Got more from him than all other visits combined with specialists! He thought maybe Inderal would be worth a try, but I told my daughter not to take it last night. She didn't and said she felt better today. I SURE hope that this could be one of the keys. I hate to think that all this time the drugs have been making her worse, but will be happy to have an improvement. I feel like the specialist diagno
  4. Did he also try the extra fluid and salt before starting fludrocortisone? My daughter has been doing that continuously, and wonder if the fludro will still help? I'm not familiar with doxepin.
  5. That is the million dollar question. She is on her 4th dr. for this if you count her pediatrician who basically wouldn't do anything. That is what the current dr. also said about being the first meds, but he switched her from metoprolol to propanolol first (and added fluoxetine and bcp). She was on propanolol 2 years ago and felt worse, but it wasn't the extended release, and I guess propanolol has a better history of improving symptoms?
  6. I am looking for other people's experiences or knowledge with beta blockers. I am wondering if maybe we need to ditch the beta blockers all together and try something else? But what? Daughter hasn't tried florinef or midodrine. Fatigue, dizziness and brain fog are the main issues. Any thoughts/experiences?
  7. How much and how often? How great and immediate are the improvements?
  8. I totally agree. NO ONE knows WHEN or IF anyone with POTS will get better! And, I am NOT willing to just WAIT for SOME day to arrive IF it ever arrives. You have to live your life to the fullest every day, and I will not rest until we have exhausted every possibility of having it the best it can be. For some that will be better than others, unfortunately, but just because she "should get better over time", doesn't mean I will give in and wait while precious days/months/years pass her by. Sorry, but I don't give in easily, and I will not stop fighting until I am satisfied. Maybe I will NE
  9. Well, we are at Mayo and that is the response I got, that medication really doesn't play a huge difference and she should gradually improve (gradually? Well, she is certainly not heading in that direction.). There are MANY drugs she could still try, but they really seem to like the "wait it out" approach. I don't agree. We realize there is no "cure", but I feel if there is something that might help get you through, why not? Isn't that what a crutch is? If you have a broken leg, you don't need crutches either! Your leg will still get better without it and much faster than anyone's POTS!
  10. Okay, so I am extremely frustrated. My daughter is not getting better, in fact, she is getting worse. I was just told by her dr. that she should just stick with the metoprolol, that drugs are just a crutch and she should eventually get better over time. I am so disappointed. Yes, I realize they may be a "crutch", but doesn't a crutch help you get by until you ARE better???? I could just scream. She is on the "list" to see Dr. Grubb, but I called yesterday and they said it could be a couple months yet. Anyone know a dr. that is willing to try different medications that is taking patient
  11. When you call, who are you talking to, the appointment people? I would keep calling and maybe even ask to talk to the dr.'s secretary. Also, I would ask about being a "checker" if you are desperate and have some time to kill. What that means is that you go to the floor and wait for either an opening/cancellation or to be "worked in". It can take a few days, but if you are there and willing to wait, someone will see you. They can't guarantee how long it will take, but it may be worth it. I know other areas take "checkers", I would assume they would also. Something to look into. My moth
  12. I sent you a message about who we see at Mayo.
  13. Thanks for your responses. I really think she should be checked for this if nothing more than to have an answer to all her aches and pains--to be validated. She once said she didn't want to go back to the dr. because they never found anything wrong and there was nothing they could do to help her. It was very sad as a mother to hear that your child feels they have to just suffer and that there is no help for them. And, I know she is SO tired of all the dr. appointments and I hate to haul her to another specialist--especially if they don't find anything. I know we should, it just gets SO fr
  14. I got the numbers back, but haven't talked to the dr. Both tests were in the normal range of 70-750. Hers was 506 when lying and 306 after standing. This doesn't make sense to me. Or, could it indicate something else? Some other reaction to standing? Could the lab have messed up and got the two results mixed? Probably no big deal, but it seems a bit odd to me.
  15. I have seen this mentioned quite a bit on this forum. I have been asked by doctors if my daughter is really flexible, but that is about as far as it has gone. She isn't generally flexible. However, after reading about EDS, it mentions dislocation or sublaxation of joints such as knees. She has had that a LOT. Also her ankles. She had her first really bad ankle sprain when she was in kindergarden. Also, she has a LOT of muscle/ligament aches and pains and some arthritis. I have even told her pediatrician I really felt she had some type of connective tissue disorder as it isn't normal fo
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