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About JFreeer

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  1. JFreeer


    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.
  2. 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.
  3. 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
  4. 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
  5. 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.
  6. Can twitching be to high sodium diet?
  7. Thank you for this forum and all that contribute to it. I am newly diagnosed with Dysautonomia and trying to find my way here in CT. My severe low bp episodes have been curbed by a high sodium(unhealthy) diet , thigh high compression stockings and 7.5 midodrine three times a day. I’m still unable to walk distances and rest frequently. Prior to this I worked out regularly. It’s been extremely hard to understand. i became a vegetarian 3 years ago. my B12 blood level was 177 yesterday. i ordered a Whole Food multivitamin with methylcobalamin 12 mcg from saccaromyces cerevrsaie. I’m concerned about taking this as I’m so sensitive to food since my episodes. I can not eat high carbs or sugars, and can only eat tiny meals because of digestion and low bp trying to digest the food. i spend most of my days try to figure out a sodium and hydration ratio to feel good. any ideas on the B12 and diet are appreciated. Soup broth has been my go to staple. I tried liquid IV powder and felt horrible. I’ve been off work and feeling devastated by this. thank you!
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