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JuneFlower

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About JuneFlower

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  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
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