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Everything posted by JuneFlower

  1. 60/30 and then also no reading at all but my daughter announced-I don't feel good and I had her sit down.
  2. Christy- sorry it didn't help your son. My daughter has abdominal status migrainosus.
  3. yes Christy, thank you. I just need a neurologist, a cardiologist and a regular dr for her. Sigh. I left msg with the neurologist but I am going to sit down with the pediatrician for advice and help. I don't know if anyone will order the DHE. June
  4. Therre is only one specialist in ny area in POTS and he won't see my daughter. I will sit down with the pediatrician and the neurologist and cardiologist to get someone to order stuff. Some of it is specialized, so certain drs may feel uncomfortable. This whole thing is a real nightmare. I am so stressed. June
  5. Ok so have the total diagnosis and recommendations for my daughter from the dysautonomia clinic. I am so happy. They mentioned she probably has a Mitochondrial Disorder. They recommended 4 supplements. Is anyone familiar with this cause of POTS? They also changed stuff and made other good recommendations. Finally someone is suggesting Florinef. I hope it helps. Very scared local doctors will not follow through on these suggestions. Anyone have any tips about that? June
  6. Christy- yeah not sure if it was rebound from stopping the beta blocker or if vets blocker is now not needed. Drs were a bit worried about her high pressure and wanted her to be checked if it happens again. Ugh. Always something. June
  7. Ok so saw both drs today. They are so awesome . Feel so much better . Did not repeat tilt as her pressure was high in office today so maybe that's just a new change. Got treatment stuff to give to local drs. Just praying someone at home will order what they want. June
  8. Lyla-thank you. It is hard for her. She is scared to begin with and the room looked like it was out of young Frankenstein. Can't blame her being upset but the pain was what threw off the test. June
  9. Yeah I kinda want to redo it but I don't know if the appt is available now. Plus I might have to changes flight. But this is our only chance to do this. I've read conflicting reports on how important the tilt test is. Her cardiologist disagrees with it. He says it does not add any info. But I don't know how educated he is. Ya know? He admits to being out of his element. Thanks everyone. June
  10. They had to stop about 8-10 min in due to difficulty breathing and chest pain. I wasn't looking at her pulse. Was worried about the b/p being so high for her. And the fact that the test was not reflecting her normal values. The dr said we could repeat it in 2 days. But I just don't know now. There are do many things attached to her. It's a scary room. She gets anxious and I'm afraid the same thing will happen again. The dr didn't seem interested in her history or normal BP. Will meet with her tmw officially.
  11. Well seeing a specialist-the tilt table test was a bust. Daughter in so much pain that her pressure actually went up a bit but was never as low as her normal. Usually when she stands-her pressure goes to the basement. Dr offered to rpt in 2 days. Is it worth it?? June
  12. thanks, I hope so. I'm glad your case is mild. My daughter seems to have a severe complicated form. The cardiologist is really at a loss and that is why I am seeing chelimsky. Her cardiologist would rather us go to Mayo but it didn't appeal to me . I hope I am making the right decision. June
  13. I think I am seeing his wife, not sure. I'm glad it was helpful for you. My daughter has already tried melatonin and benadryl with no success. In fact I thought neither were recommended in POTS. Hmmm
  14. Gemma- yeah some ppl with CFS are very debilitated. I am not . If I pace myself, I am ok. I work 2-3 days a week. I spread them out. I do push myself a lot more than I should. June
  15. I don't have pots . My daughter does. (See signature). I will ask my lawyer when I talk to her. But the info should be on the disability rights website. I have chronic migraine and have chronic fatigue still. I don't work more than one day in a row and the day after work is a day of rest. June
  16. I meant the schools that are public and K-12 have to follow federal law. Colleges may or may not be different. I am a nurse and I understand the clinical day. As an RN- I would not have accommodations at work. There is a certain level of physical fitness that is required for the job. I would not be surprised if nursing school clinicals are similar . I know nothing about physical therapy. I think getting healthy is a priority. It's not easy. June
  17. I have similar symptoms, keep putting off going to dr. Edema has so many causes. Does not makes sense to speculate without some tests. It also could be nothing but I would definitely check out the shortness of breath. That needs to be addressed. good luck June
  18. Katybug had a great idea. I do work in that field but am not a dr. And I've never had a patient with POTS. Guess it's pretty rare. But I would imagine that during the actual delivery, your pressure would go up and faiting is unlikely. Many women can faint afterwards and this is pretty normal as long as it improves quickly. I think extra fluids are possibly a good idea….just not too many-too much IV fluid is also a bad thing. But they will watch the totals. I worry about all sorts of stuff when my daughter does it now. She always surprises me and is fine. I guess I would try not to worry. All
  19. my daughter occasionally have that. But mostly she has narrow pulse pressures. I read a few things about it. It seems to be related to hypertension. June
  20. I do believe you can have a psychiatric service dog. In that case, one does not need to be physically unable to do a certain task... This is an interesting thread. I think the parameters are different in different areas of the world. June
  21. Thanks, great thread with good advice !
  22. well at least you've ruled out something. Guess it sounds like a trip to the dr.
  23. welcome. My daughter is on Midodrine among other stuff. But the Midodrine helps a lot. June
  24. that sounds awful. Could be physical. It kind of sounds like a panic attack. Any anxiety when this happens?
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