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akj

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  1. Would appreciate your input. Besides Dinet what other internet sites do you regular check for information and good discussions on Dysautonomia? Thank you. akj
  2. Jyoti thank you so much for pointing out this conversation. It was excellent. I felt Lauren was extremely knowledgeable and well spoken. As she always seems to be. It was the kind of conversation I have longed to have with a medical person to help me understand what was going on and to give me the strength to keep going. I am embarrassed to admit I wept when she talked about those waiting for a good diagnosis and possible working strategies for management and how hard it is to keep going day after day. Though my one hopeful note is, that 7 months from now one Autonomic Disfunction clinic will accept me for evaluation. But as Lauren mention sometimes we learn more from our support groups then our doctors. And so that has been for me. Thank you , thank you Lauren for your thoughtful and learned talk. And to Jyoti for calling my attention to it. akj
  3. Thank you bumpkin. Appreciate the information. Was this done during a physical therapy session, a chiropractic session, or with a primary care physician’s help? Who does VNS? Thank you, akj.
  4. Has anyone found a cardiologist or neurologist in San Diego County area experienced in treating Dysautonomia/orthostatic intolerance? The only physician listed in this area on the Dinet physician’s list has retired. Would be most grateful for any information. Thank you, akj
  5. I think this might be the article title. Can’t get access to complete article. But abstract looked interesting. https://www.jacc.org/doi/full/10.1016/j.jacep.2023.10.015. AKJ
  6. Was just reading about a 2023 study from the University of Oklahoma about some success with vagus nerve stimulation that produced some POTs symptom relief. Emerging Role of Autonomic Modulation by Transcutaneous Vagus Nerve Stimulation: Electrifying Hope in POTS?∗ Has anyone tried something like this and was it at all helpful? AKJ
  7. Bailee Don’t forget yourself as one of the most important support structures for your cousin. Having someone to talk to that is experiencing the same condition is one great huge help. Going it alone is so scary. akj
  8. Yes that is a more realistic quote as to how we all feel. Thank you for the smile it brought. Hope you are having a positive day.akj
  9. Thank you, Pistol. My brain isn’t working and I forgot how you taught me to recreate the person’s icon in a response. Will check back on our older posts and remind myself. We, my cardiologist, who has stick with me through all this, and I are definitely relooking at my medications. BP and HR are staying pretty much in same pattern with systolic numbers dropping in 70’s on standing. But we will also review that as I have kept records . But wanted to thank you for your thoughtful response. Much to think about, changing symptoms, worsening symptoms, medications, and how to cope. You give lots of support to so many. Thank you. akj
  10. Would very much appreciate input if this sounds typical. I have had Dysautonomia symptoms for many years, though only got a diagnosis 9 years ago. I have gotten used to compression socks, abdominal binder, 3 liters of water, 2 tablespoons of salt spread out through the day, Liquid IV, small meals, monitored careful rowing, and Midodrine,all the regular stuff we are supposed to do. My usual symptoms have always been dizziness, lightheadedness , pre syncope, sometimes syncope, lack of focus, weakness, nausea, etc. But just tried to manage with mornings being the worst. In the last year I have had three sessions of loss of mobility where I can no longer stand and then bouts of vomiting. As I mentioned in a previous thread, at first I was so scared I was having a stroke I ended up in the ER. But after 2 trips and all tests coming back normal I started just trying to get through it. Does this sound like just another cluster of symptoms experienced by people with Dysautonomia? My cardiologist keeps telling me Dysautonomia symptoms aren’t lethal, but it sure feels awful. And because the usual pattern has changed I wonder if something else is going on or is this another Dysautonomia symptomatic pattern? Thank you in advance for sharing any input or your experiences. akj
  11. Sara Thank you for posting this. I truly thought I had gone through all the presentations of the 2022 conference and I always pay attention to anything Dr. Grubb presents. But I did not see this one. It is a great presentation ; succinct , with excellent summaries of treatments backed by studies. Very timely for me as my cardiologist and I are ready to try different medications. Have you been able to get the 2023 conference presentations? I was able to see only six and wondered if access to the others would be available. Thanks again for the investigative research that you do and for sharing. We have had some excellent, well organized summaries about Dysautonomia concerns. akj
  12. Very interesting and helpful. Thank you for sharing. Appreciate the summary and collation of information. Sometimes you read so much trying to understand Dysautonomia conditions and treatments you become overwhelmed and forget all the connections or your brain fog makes rational thought difficult. You did a great job. Thank you. akj
  13. Very impressive and well done. Thank you for sharing. Appreciated reading your daily schedule, good ideas, and most helpful. akj
  14. Sarah Tee, yes first and foremost, as Pistol so kindly reminded me, congratulations on your return to a more normal brain blood flow. I didn’t mean to be rude and to forget to mention that. I just got excited and thrilled that there might be an answer to improving brain blood flow. Best wishes for continued improvement. akj
  15. Sarah, did I miss a conversation thread. What caused the blood flow to your brain to return to a normal level? akj
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