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Lynne

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Everything posted by Lynne

  1. This discussion has really helped me! Now I am going to explore the linkages between heart rate problems, orthostatic intolerance, hormones, and ovarian cysts. We we will definitely circle back to a knowledgeable cardiologist. My daughter had an escalation and acute event in Sept. 2016 that my husband and I felt presented like a stroke. She had a whole host of symptoms including dizziness and balance and she didn't talk for 3 days. It was preceded by several months of migraines. She had a non contrast MRI and they ruled out stoke. When she continued to have a lot of cognitive problems a few months later we got a contrast MRI that was normal. We have been seeing a bunch of specialists with no success in diagnosing the root cause of her many, many symptoms. I really appreciate all the information you provided.
  2. We are going to try cucumber, fresh mint leaves, lemon juice, and Celtic sea salt. It is good for hydration and digestion per recommendation of our nutritionist.
  3. Thanks. I have been wondering about the adrenal glands and we want to see an endocrinologist too. We will start for the cysts with the GYN and maybe we can get a good referral.
  4. Does anyone know if ovarian cysts can cause or exacerbate dysautonomia symptoms. From what I've seen and read there seems to be a connection. We are starting to track the dysautonomia symptoms as well as the timing in relation to the monthly cycles. We think this connection may be important. In the multitude of specialists we are circling back to the GYN doctor and we want to be prepared. Any advice is appreciated.
  5. Wow! Thank you so much for your reply. I suspect my daughter was allergic to it. She had very strange symptoms and her lymph nodes got swollen for a month with no reason and no other illness. She had severe numbness in the upper half of her body and also a few days of 24-hour confusion. Normally with her pots she only has short episodes of extreme confusion. She would also get extreme swings of hot and cold - I mean extreme. I could even feel her limbs as icy and then a few hours later she would be sweating. Although these are normal symptoms of POTs she never had it that bad and was functioning much better. After being told to double the dose to 5, my husband and I decided to wean her off first to make sure the medicine wasn't the culprit. It took over 2 weeks for her to start to feel better (her lymph nodes have now gone down) but her temperature swings and heart rate seem worse than when we started the medicine. I hope in time this does resolve and I'm sorry to hear about your difficult experience. Anything else you can share would be appreciated. I've been checking this post every few days and no one else has answered so I really appreciate it.
  6. Does anyone have information about how long it takes for Bisoprolol Fumarate to leave your system? Someone I know was taking 2.5 mg/day for a month. I am wondering how long it takes for any symptoms or side effects to resolve once you've weaned off of it. The medicine was stepped down slowly. Please share if you have useful experience. Thanks.
  7. I have the same question. My daughter hasn't had any shots for the past two years. It sounds like some people are fine while others are not.
  8. Wow! I am going to read all of this again before we go. I am nervous but will help my daughter get prepared. Thank you all.
  9. I am wondering if there is any information or concern about flying with dysautonomia. Please let me know. My daughter is planning a trip so any advice is appreciated. It is a 2-3 hour flight. Do I need to worry? Any tips? Thanks.
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