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Everything posted by JuneFlower

  1. Has anyone used or considered using a service dog for dysautonomia? My daughter has frequent drops in her blood pressure and is prone to fainting like many of you here. Also she has developed severe anxiety to go with it. I have inquired at one training facility. Just thought someone here might have thoughts. June
  2. I thought deconditioning-(not trying to walk) could make POTS worse? I have not entertained the idea of a wheelchair. Soon we will get my daughter back to exercise.
  3. I can run it by my education lawyer but friends have told me that private institutions are not subject to the same laws as public school. Not sure how that shakes out. I'm a nurse and Nursing instructor. Are you in nursing school? You said 'clinical'. But that could be anything. You know your limitations better than anyone. If you can't work through a 6-8hr clinical day, you might want to take more time off. There is little room of substitutes for that. June
  4. little_blue_jay- I have IBS-D and I have daily bad stomach cramps and pains. So yeah I understand where the doctor is coming from. There are some theories about IBS but I don't think the doctors really 'know' what cause the pain. Something about misfiring serotonin that causes fast or slow peristalsis and ultra sensitive nerve fibers. Hmm. June
  5. Of course you should ask a dr. However I do know that gas pain is exactly as you describe. But if that's it, then why do you have such bad gas? Usually that kind of gas pain is post surgical. Good luck. June
  6. MakeMeErised- I understand that feeling but they are just people. They should understand your questions. And consider preparing a packets detailing this stuff for everyone.! June
  7. I would email or call Vanderbilt directly and ask a nurse or something theses questions. I have done that with an appt my daughter has at another hospital. I got detailed email answers and instructions on all tests. This is the very least they should provide. June
  8. well i hate to add confusion to that theory, but I don't have POTS or anything, (my daughter does). I have plenty of white matter lesions. I seem to just have migraines and maybe fatigue but I don't meet the criteria for CFS. So….my theory, is they just don't know what these things mean. It is well known now that migraines cause small amounts of brain damage but that they don't know if this damage has any symptoms. Weird. June
  9. Not sure what I would ask. Congratulations. It's probably a perinatologist. I would educate the doctor about POTS -maybe bring a study from a reputable journal- and if you have hypovolemic POT, I might ask how the IVF will be managed. June
  10. I have this same result on my MRI's as well. I actually have many areas of this. The dr.'s say it is insignificant. But every case is different so I would ask your actual dr. I some lesions are associated with chronic migraines. I have migraines so I have assumed this is from that. June PS mine also mentioned demyelination and this scared me. But it's been about 4 years and I'm still fine.
  11. Christy- we are seeing that same dr I think so maybe we will see some relief! Galatea-The list of things you describe of course have been tried . It is also difficult to tell a teenager that they can only use their room for sleep! Karybug-will read that soon!
  12. Thanks, I will look into 303. 4am is late. My daughter does fall asleep eventually around 6am. But school requires her to be up at 6:30 but she doesn't really go. I have to keep trying to keep her up during the day so she can maybe be more tired at night. It is such a war. June
  13. Not sure. Many drs have been consulted on this….none want to prescribe anything anymore due to her previous weight loss and her blood pressure. But I can always ask again. June
  14. I hate insensitive people too and have had my fair share a lot recently. (too long a story). But we have to be positive and carry on ourselves. Ignore the neighbors and do your own thing. I wouldn't watch their cat again though. June
  15. found this: Clonidine is used alone or in combination with other medications to treat high blood pressure. Clonidine is in a class of medications called centrally acting alpha-agonist hypotensive agents. It works by decreasing your heart rate and relaxing the blood vessels so that blood can flow more easily through the body. The side effects look pretty miserable. Also since my daughter has very low blood pressure, this med would be bad and interact with her current treatment. Not sure if this one is what you meant. I know I want help for her but I can't risk making her worse. I would try the
  16. Clonidine is Klonopin, right? We have a sever allergy to that in our family. But I'm glad it works for your son. June
  17. well theoretically it could make some sense. At the end of the pregnancy, your blood volume doubles. This could improve some pp.'s POTS symptoms temporarily until your body gets back to normal. I can't understand why it would permanently cure POTS though…. June
  18. wow thnx guys these are good suggestions. So Sonata is Zaleplon? I don't know if they would give that to a child but I will ask. June
  19. Ok looked up both drugs. I'm not thinking either one is ok for a 13yr old. Maybe lunesta but I tried that once and it didn't work and had an awful taste that lingered for hrs. Klonopin is not good for ppl in our family. But thanks for the suggestions. Maybe the books on tape will work. Sigh June
  20. No we havent tried clonidine or the other one becia mentioned . I will mention to some dr. Most of her drs won't prescribe anything for fear it will make her lose weight or affect her blood pressure. June
  21. I have been tested for celiac and so has my daughter (with POTS). We are negative . But I just started gluten free. Can't wait to hear the answers here! June
  22. My daughter doesn't sleep all night. Like she is up until 6am. Ok so I don't let her sleep during the day. Things she has already tried, Melatonin Valerian Trazadone Benadryl Periactin Vistaril A few antidepressants Nothing worked except trazadone a bit but she had to quit that due to its side effect of low blood pressure. Sigh. Any suggestions? June
  23. well when her blood pressure is bad , her pulse pressure is very narrow which isn't good. She also feels terrible. When her pulse pressure is good, she also feels terrible. So there is no correlation. Oh well. June Rachael-yes we are seeing specialist in May. We'll see.
  24. can't give medical advice but those are all normal results. The 137/84 is borderline high but a one time reading is not a worry usually.
  25. As I said above, she is only on Midodrine and Nadolol. We stopped anything else months ago. There was no change in her symptoms. Without the prior mentioned meds, her blood pressure is non existent and she passes out.
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