angelloz Posted May 11, 2019 Report Share Posted May 11, 2019 To all, it has been 10 years since I began my dysautonomia issues. I am now 60. In the beginning I was fairly bed ridden. Breathing was off, sleeping was impossible as my body would jerk awake often. Odd dreams, off vision, blood pooling, tachycardia, low blood volume, going to stores and feeling off kilter, weight loss and on and on. I made trips to the Mayo Clinic, saw many physicians, you all know the drill. Slowly, things have improved. I will never be the same but most every issue has lessened in intensity. Salt and fluids are my best friends. I just wanted you to know that things can get better even when it may take quite a long time. I wish I could feel the way I was before my illness but I am so very grateful for the gains I have made. For those just starting with all of this, hang in there! Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted May 12, 2019 Report Share Posted May 12, 2019 Thank you so much for sharing, I am sorry you have been ill so long (I am coming up for 5 years) but it is so encouraging to see a long timer doing relatively well. It seems to me those who develop it in adulthood and don't recover quickly or respond to meds just progressively worsen as the years go on, so thank you for showing that it isn't always like that! I used to get those sleep jerks in the first few months too - they stopped when I stopped the SSRI. Also lost significant weight at the start and strongly suspect I have low blood volume. Are there any meds or other strategies you have found helpful in stabilising/improving things? I no longer salt load but do drink oral rehydration solution which has salt in. B xxx Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted May 13, 2019 Report Share Posted May 13, 2019 Thank you for sharing. That is great that you are feeling so much better. Hopefully you will continue to see improvements. I have also had recovery. I have had two periods of severe symptoms that were extremely disabling in my 30s and 40s, and both times recovered eventually quite well. I had all the symptoms you describe, as well as severe exhaustion that prevented me from leaving my bed or my home for months. For me, fluids were extremely important, and modest increases in salt intake. IV fluids helped me greatly in my 2nd bout. Quote Link to comment Share on other sites More sharing options...
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