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Heartbroken

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  1. Thanks Kim. Wishing you better health. Appreciate your kind reply.
  2. Kim, Yes it runs in my family, but for some reason (probably aging and developing many other illnesses) I am getting worse and worse. May I ask who treated your underlying autoimmune disease? Thank you.
  3. Thanks Pistol for your sincere reply. I have been walking on the shoulders of giants to be treated for my EDS. My GP who is an internist has no clue. I found only one geneticist in my state, he is booked out for 3 years. Yes, it is extremely hard for health providers and me to manage my health with all of those diagnoses. I no longer know what symptom belongs to which disease.
  4. I have asked both of my GP and EP to have another TTT, but they both said: Oh well, we know you have had 3 positive TTT s in the past decades a go, there is nothing to be done. I had one TTT overseas, another one in my state and the last one was in Vanderbilt.
  5. During my visit I asked my EP if he ever heard of taking blood samples in 3 positions. He said NO!
  6. @MomtoGiuliana You are definitely right regarding how those Dr.s have a simple understanding about Dysautonomia. I have been to 19 cardiologists and EPs, none of them were interested in my condition except 2 of them, one in Vandy and one in California. This EP did not bother to physically examine me, only his nurse listened to my heart quickly. I was diagnosed with a TTT decades a go. For decades I had a very bad tachy, but in the last 5 years switched to brady because of Hypothyroidism and Hashimoto's, but still getting frequent SVT. Thanks for your reply.
  7. To be honest with you, my EP has so little information about POTS, he is more interested in treating heart rhythm disorders, mostly he does ablation. I have non sustained SVT and atrial tachycardia. Regarding my norepinephrine receptors, I have no idea. Doctors here never dig that deep with an uncommon syndrome. Thanks for the stroke risk reminder.
  8. I have tried many meds since I was diagnosed after waiting for 44 years to get diagnosed. None had worked or I had severe reactions to them. I have Hypothyroid, Hashimoto's, Arthritis, Reactive arthritis, Osteoporosis, EDS, hyper POTS, NMH, migraine, SVT, Atrial Tach, Radiculopathy and some other conditions.
  9. Thank you guys for your replies. My major problem is my BP which gets high whenever I stand, also my tachy would reach 155BPM. Like wise my Migraine med will interact with Northera as I mentioned in my previous post. If my BP is already high, why would I take a med makes it higher? CallieAndToby22, No he never explained that. I am taking Atenolol and many other meds for other conditions including Eleteriptan for migraine. He did not take me off of any of them. I am still not satisfied.
  10. Here is what he has written to me today: (The only way to see how you do with the medication is to try it, If you don't feel better on it, then we stop it. If you don't wish to start it, that's ok too. I am not concerned about any dangerous side effects if you do choose to start it). My question is should I stay with him?
  11. I saw Dr. Biaggioni back in 2012 and I no more have access to him to send him a question. I am pretty sure he will not approve this medication for me. Plus I have been on Eletriptan for 16 years for migraine and I am still on it, but in the information I read about Northera literary says: Avoid Eletriptan if you take Northera. Do you believe that? how in the world he wants me to take it then?
  12. Thanks for your input. I have been using abdominal binder for decades. Hope you continue feeling good with all those meds.
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