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jayut

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  1. I was having a lot of cardio-like symptoms: Large variability in blood pressure, palpitations, PVC's, and arrhythmias. Magnesium is a natural calcium channel blocker. I started with 100 mg per day and worked up to 100 mg TID over 3-4 weeks. I use Mg Glycinate. It's the only form I can tolerate. It has worked wonders for me. My heart hasn't felt so calm in years. Mg has a ton of other benefits and it's GABA-like properties help with anxiety and stress. As a matter of fact, I had a much better response to Mg than Beta Blockers.
  2. I trialed Midodrine and it didn't do anything positive or negative.
  3. Does anyone get teeth pain, facial pain, facial tingling, scalp tingling, pressure or fullness in ear(s) after standing for a period of time? If so, do all these symptoms subside after laying down, completely flat, for 30 minutes?
  4. Another study linking cfs leak and POTS. https://journals.sagepub.com/doi/full/10.1177/2515816318773774
  5. Cfs leak Q and A with Dr. Schievink. https://www.csfleak.info/what-is-a-cerebrospinal-fluid-csf-leak/csf-leak-questions-and-answers-schievink/
  6. SIH and cfs myths. https://www.ncbi.nlm.nih.gov/m/pubmed/29797515/
  7. Also according to Dr. Kranz video. Imaging becomes less reliable the longer the leak had existed. https://spinalcsfleak.org/symposia/symposium-2018/ Upon reflection, I first started having orthostatic headaches in 1997 after injuring my lower back while working out. It became full blown disabling POTS after another back injury in 2014. Could I have had some low level leak since 1997?
  8. Fresh off the presses. Dated May 22, 2019. https://www.ncbi.nlm.nih.gov/m/pubmed/31118385/
  9. It is my understanding that MRI for cfs leak is very specific but has incredibly poor sensitivity. https://spinalcsfleak.org/about-spinal-csf-leaks/diagnosis/
  10. Had anyone out there with pots later discovered they have a cfs leak? What happened? Did the cfs leak get treated? Did pots symptoms resolve?
  11. @Alan-pots-IST This is an extremely old post, but I am curious what happened with your ALA experience? What form and brand did you take? I am going to try ALA 600 mg + NAC 1200 mg
  12. Effects of intermittent intravenous saline infusions in patients with medication-refractory postural tachycardia syndrome. https://www.ncbi.nlm.nih.gov/pubmed/28185102
  13. My nervous system seems hyper sensitive to just about everything. It's so frustrating. Light, sound, smells, taste, positional changes in posture, etc, etc. I don't know if EMF bothers me, but I am taking a cautious approach and trying to reduce and/or eliminate as much as possible. Unfortunately, I feel like this could be psychologically counterproductive. I already feel like a hypochondriac and have enough stress in my life. Do I need to add new one? Heart rate variability affected by radiofrequency electromagnetic field in adolescent studentswww.ncbi.nlm.nih.gov/pubmed/29469164Analysis of the mobile phone effect on the heart rate variability by using the largest Lyapunov exponentwww.ncbi.nlm.nih.gov/pubmed/20703598Electromagnetic fields produced by GSM cellular phones and heart rate variabilitywww.ncbi.nlm.nih.gov/pubmed/17004239Effects of electromagnetic field exposure on the heart: a systematic review.www.ncbi.nlm.nih.gov/pubmed/24021427
  14. I also started testing Mg Glycinate 1.5 weeks ago. I slowly titrated from 100 mg to 100 mg 4x over the 1.5 weeks. My initial response seems very positive. Heart palpitations are down, my BP is slightly lower, but extremely stable at 115/75. I also noticed that my heart rate doesn't jump as high. It used to jump from 60 to 120+, but now it seems slightly calmer at 60 to 90+. Additionally, I noticed my pulse pressure width is much more stable. It used to vary from 40 to 60, but now seems a very stable 40-45. Also, I don't feel like my chest is going to explode from the heart beats. I feel much calmer and more relaxed. To be honest, 1.5 weeks is far to early to give a true conclusion. I find I have to test something for at least 1-3 months before I can make an honest conclusion. https://www.ncbi.nlm.nih.gov/books/NBK507250/ https://www.ncbi.nlm.nih.gov/pubmed/10454449/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5452159/
  15. All great ideas. We did chase the initial IVIG with Saline, but I don't know how much. Also, I did stay very well hydrated before, during and after IVIG. We didn't try a slower infusion rate. The nurse kept checking my HR and BP during infusion and everything was great so they kept their standard infusion rate. It is odd that I didn't get the aseptic meninigitus until 1.5 weeks later. RX doc said he had never seen or heard of delayed aseptic meningitis and thought this was extremely strange. It took almost 2 weeks of Tylenol, Advil, and Prednisone to get the aseptic meningitis knocked down. It was terrible. It all escalated on Oct 31, Halloween. My daughters first Halloween to dress-up and she was old enough to be aware of what was happening. I ended up spending the night on the phone with the on-call doc trying to figure out what was happening and why my temperature was 104F. I hate when this illness gets in the way of some of the special moments. My current doc seems extremely cautious after my aseptic meningitis complication. As a result, he is trying to refer me to Dr. Steven Vernino. It's my understanding that Dr. Vernino helped design the Mayo DYS1 test. I hope this referral goes through.
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