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JeWareGT

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  1. Does anyone know how often it's safe to get b12? I've gotten it in my IV every time so far... Just want to make sure Im not missing anything like with the oxygen.
  2. Wow, thanks for the info on oxygen! Very interesting...
  3. Yes, I love it!! And the effects seem to last 3-4 days... I'm going to start sounding like an obsessed fan soon, I think! I have an appointment for tomorrow afternoon, so hopefully that will get me through last minute holiday shopping, etc. This place also gives you oxygen during the infusion (if you want), and I think that may be helping as well! It's especially great because it is only 3 miles from work, and is on my way home, so it's not even a big inconvenience to go.
  4. I think it is more of the way my doctor wrote the prescription (or the way the hospital interpreted it) rather than my insurance... I actually have really great insurance, which is why I was so shocked! Anyway, I went to Hydration Station, and it is amazing! The first time, they couldn't find a vein, and after an hour, we decided it was time to give up. But I've been back twice since, and it's great! Very cost effective, and the place itself is really cool. You can choose either a private room or basically a big living room with tvs, and they have heated/massaging recliners for you to sit in and they give you blankets if you are cold from the IV. For anyone in the Altanta area, I highly recommend it! It was also really cool, because every nurse I've had has been very interested in Dysautonomia even though they don't know anything about it, and one even told me that next time I come in, she will have read up on it and will be an expert! Haha. I personally have never had doctors or nurses be that interested, so this is a first for me!
  5. I had a cardio appointment this week, and suggested a standing order for saline infusions. To my surprise, although he hadn't ever heard of anyone doing that, he thought it was a great idea and wrote the prescription. Yesterday, I went to the hospital to try to set it up, and found out that they wanted to charge me $300 towards my deductible each time. For one liter of saline! Does this sound normal? I wasn't prepared to spend that much money yesterday, so I left without getting the infusion. I live in Atlanta, and there is a company here that does saline infusions for athletes and people with hangovers mostly. It's $99, which is much better than $300, but it looks like the saline goes in in less than an hour, which I know will not give me as much of a benefit as the 2 hours I was prescribed. Still, I'm thinking of trying it this afternoon. Has anyone heard of it? http://www.hydrationstationatl.com/
  6. I get that sometimes as well. Also, whenever I have allergies or a cold, my right eye way over produces tears, while my left is normal. The right produces so much that my eyelid fills with fluid and gets really puffy. This is a newish symptom though, it has only started happening within the last 6 months or so.
  7. The temperature was cool but comfortable, didn't feel especially humid or dry.
  8. Anyone ever tried halotherapy, where you sit in a salt room for an hour and breathe in the salty air??? There was a groupon for a session about 10 minutes from my house, for only $15, so I gave it a try yesterday, and I actually feel really good today. The problem, is that I also started drinking Nuun drinks 2 days ago, so I have no idea which is making me feel better. Not my smartest move! Does anyone have any experience with it? I don't have any breathing issues, so any therapeutic effect would just be for my NCS.
  9. Just ordered $50 worth at Super Supplements ... got 8 different flavors.
  10. I am female, 5'6", 120lbs, pale... I fall under the adolescent onset category (I was 16 when my NCS symptoms started). Very interesting!
  11. Thanks for the responses! How many do you use per day generally, and what flavors are the best? I drank 2 yesterday, and one was pretty close to when I went to sleep, and I didn't wake up to pee at all last night! Maybe it's a coincidence, but I feel like I held my water a little better yesterday than I do normally. Very exciting
  12. LOVE yogi tea. I drink the Egyptian licorice one every day.
  13. That is a bummer! I just got the strawberry lemonade kind this afternoon and it's delicious.
  14. I used to pass out as a baby whenever I was startled, but I outgrew that until I was 16 which is when my symptoms really developed. Finally got my dysautonomia dx at 26, after 10 years of going to lots of different specialists who all told me it was anxiety, etc.
  15. I heard about Nuun on the radio this morning, and I'm intrigued. The line with the highest sodium has 360mg, which is great for a 16oz bottle of water! I have been worried about depleting other electrolytes with all the salt loading, so this could be a good option to keep the other levels up as well. I think it's also zero or low calorie, so it seems like a better alternative than gatorade, etc. Anyone heard of/tried it? http://www.nuun.com/products
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