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  1. Does anyone have tinnitus since they were diagnosed?
  2. Hi All, hope everyone is staying well. I had a tilt table test last week and was diagnosed with Nueral Mediated Syncope from an EP. He said we would discuss more in an office visit but that may not be until end of August or September. They haven’t even called me back yet. I’ve been stable on 6 grams of Sodium a day and 30-40 compression hose. He said to continue those and there is other options We can discuss. I guess my question is what makes this different than other dysautonomia diagnoses? I did stand on tilt table for 36 minutes and finally had a very low bp episode which felt horrible. Is it the length of time I stood that makes it a differential diagnosis? thank you to all in this community!
  3. @JimL Thank you. There is a relation of SSRIS and Dysautonomia . I’m guessing we each have different causes of the dysautonomia and we need to figure that out.
  4. Hello, I never had Tinnitus until I was diagnosed 3 months ago. It comes and goes. Usually seems to come in afternoon and stronger in the left ear. It sometimes comes at night with lying down in bed. I feel it probably correlates with my bp and my dysfunctional Nuerological autonomic system. I cannot correlate it with any certain signs or symptoms that comes with it.
  5. @Pistol Thank you so much. I’m going to read the article 🙏🏻
  6. Hi Everyone, i hope everyone is well and staying safe. I wanted to see if anyone had experience with going on an SSRI such as Lexapro for low bp and high HR’s. My bp does go high with stress too. I also have cold temperature intolerance. thank you
  7. I take Licorice Extract twice a day. I was told the Licorice extract stabilizes the cortisol in the blood and keeps the cortisol in the blood longer which stabilizes bp. When I was bad in my flare up my cortisol was probably being used up to keep my bp up. I believed Licorice helped for that. The adrenal effects.
  8. Thank you @yogini I did go off the Midodrine per my PCP and will use it as PRN. Its too bad I had to stop working because the hydration in the morning was too much before my shift with the high bp after going back for 4 days. Iḿ going to try to go back in another 4 weeks. I have a potential virtual appointment with a dysautonomia specialist in Amherst, Ma,but Iḿ concerned because she does not take insurance so its going to be an big OOP expense. Iḿ weighing the pros and cons to this and will keep researching. I see you do anti gravity yoga and will have to look that up. Before this happened in January I was a Barre teacher which is a fusion of ballet, yoga and pilates. Stay safe and Thank you!
  9. Thank you@Pistol for your response. This response was so informative and seems right on. I did ask my boss to not schedule me for 4 days in a row again. So now I will just do 2 days and off a day and back on for 1-2 days. I thought I could reset with just 2 days off from the High BP episode but it took 4-5 days off. I had to call in sick again . Overstimulated is the word I did not have to describe it, but it was exactly what happened. I had to force myself to sleep. I woke up with extra energy,etc. I guess this is the fight or flight response. I have put my meditation as a goal twice a day now and it had began to help. I am looking in to other self preservation and self soothing activities to try to prevent that adrenaline rush. I thank you again for sharing your knowledge as I do not hear this much information from the regular health care community I work in. When i had high bp at work my nurse manager insisted I be seen by a rheumatologist. I wasn't sure about this. Have you heard any experience with this? My antibodies have been negative with my testing.
  10. Hi Everyone, hope you are safe. I was diagnosed and sent to the ER with high bp and high heart rate. About a week after that is when my low bp became a problem. It lasted 2-3 months. i was on Midodrine and high salt diet. I am weaned down to 2.5 mg of Midodrine in am. I was up to 7.5 3 times a day. I have gone back to work and my early shift combined with stress put me in to a high bp last week (140/100), While my HR was on the lower side(70’s with activity, it usually goes in to the 90’s with walking). I am a Respiratory Therapist at a Hospital in CT in the surge of Covid. my pcp recommendation was to go off Midodrine and reduce stress, lol. I don’t understand this disease. Do you often go high and low? If you are running higher should I cut out the high salt diet , compression hose and black licorice root? How often should I take my bp? one interesting thing was that I took a Tylenol when my bp was high and it made me feel better so I may keep those handy. Because I was diagnosed in this Covid pandemic I haven’t been able to get to a Dysautonomia specialist. I also don’t understand if I am coming out of a flare up or going in to a new one and what my new baseline looks like? Basically I can’t rely on my body it’s one day at a time but that makes life hard(especially mornings). Any ideas I appreciate, and I know it’s not official medical advice.
  11. I am recently diagnosed. I found that I need to drink Gatorade but also need more salty drinks and food to help retain the fluid in my system. I drink 2 cups of soup broth for breakfast followed by 32 ounces of Gatorade and eat salty snacks throat the day. That’s what’s working for now. I think everyone is different. it’s a balance of salt and water that’s going to help maintain bp.
  12. Thank you. My evening dose is at 630 so it’s a couple hours before bed. I should have clarified that. My bp went very high in the ER when they gave me 10 mg. I just don’t see it as a long term solution and more of a bandaid when bp’s are uncontrollable during a flare up.
  13. Yes this is very helpful @Mom of 4 because I was just diagnosed I guess my flare up is on the good side. i had no idea what hit me when I would have what I think looking back was the adrenaline spikes that left me paralyzed on my couch because my bp was so low. I now sometimes just feel fatigued around 10 am and I see my bp goes down a little at that time so I think I will try to move it to then. This all makes sense. thank you, jeanie
  14. Hi everyone, thank you for all your knowledge and for information. I am newly diagnosed and trying to figure this all out. the forum has been so helpful. I have a question and Midodrine . My doctor scheduled me to take it twice a day in the morning and in the evening before bed. After reading about it I see a lot of information that it can be used on an as needed basis. I feel I can almost go off of the 5 mg and use it as needed. Any ideas? Thank you
  15. I got Jomi from Amazon 30-40 mmhg and they made an immediate difference. I just looked in to spank and will be trying their level 3 support abdominal/ shirts this coming week.
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