JeWareGT

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.

Wow, thanks for the info on oxygen! Very interesting...

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.

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!

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/

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.

The temperature was cool but comfortable, didn't feel especially humid or dry.

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.

Just ordered $50 worth at Super Supplements ... got 8 different flavors.

I am female, 5'6", 120lbs, pale... I fall under the adolescent onset category (I was 16 when my NCS symptoms started). Very interesting!

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

LOVE yogi tea. I drink the Egyptian licorice one every day.

That is a bummer! I just got the strawberry lemonade kind this afternoon and it's delicious.

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.

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

I have NCS, and the symptoms (at least in my experience) are identical to POTS. Btw, I don't faint-- a lot of the descriptions you'll read online make it sound like fainting is the main symptom of NCS, but I've had it for more than 10 years, and I don't faint at all. Just lots of pre-syncope :/

Thanks for your response! I found the one she gets from her herbalist for much less $$ on Amazon, so I went ahead and ordered a one month supply. We'll see how it goes!

My cousin has started taking an adrenal support supplement and swears by it-- she says her fatigue is about a million times better since she started taking it. However she does not have dysautonomia, so I wasn't sure if it would affect me the same way it did her. I looked up the ingredients, and most say they combat stress, calm the nervous system, and stabilize blood pressure...so I thought maybe I would give them a try. The ingredients are as follows-- any reason why I shouldn't take these w/ dysautonomia? Anyone know?? Siberian Rhodiola Root Extract Holy Basil Leaf Supercritical Extract Ashwagandha Root Wild Oats Milky Seed Fresh Schisandra Berry Help???

Yes!!! And the roof of my mouth too. It doesn't happen all that often, but it is very strange. Mine doesn't get numb, just a pop rocks sort of feeling. No idea what causes it-- I'm not on any meds at the moment.

Thanks for all your responses! I'm completely new to all this EDS business, so this is really helpful. Katybug, I sent you a pm with my email address.

Wow, that's such a long time to wait! I guess I'm really lucky I got an appointment so quickly... I hope this means they aren't as well qualified or anything like that. I will definitely report back next week and let you know how the appointment went.

I had an appt with my cardiologist yesterday and mentioned EDS to him, and he gave me a referral to a genetic counselor. I have an appointment a week from today...any advice?? Anything else I should go ahead and get tested for while I'm there? I've never done genetic testing before, so I'm not really sure what all they can test for, etc. My cardio appointment was pretty much worthless other than that; yesterday was apparently day 2 of their brand new computer system, so I mostly got ignored while he tried to figure out how to enter my information into the system. I asked about licorice and whether or not I needed my potassium levels checked (I've been drinking licorice root tea every morning for about 2 weeks, and I've been sleeping so much better and can definitely feel a difference) and his only response was "I don't like tea with dysautonomia because it has caffeine, but if you like it and it makes you happy, go ahead and drink it." Um.... first of all, it is caffeine free, and secondly, I just told you I'm self medicating with an herb and wanted to know if it's safe, and you basically ignored me. But of course, after sitting under fluorescent lights up on the table with my legs dangling for 45 minutes, my brain was a little too foggy to actually think to say that. So I didn't get an answer. Anyone know?? I'd like to start taking it in pill form, but herbs kinda freak me out so I don't want to do anything that might end up being dangerous. Also a bit of advice...always bring your own salt when you go to someone's house! I was at my inlaws all weekend, and felt especially crappy despite over salting all my food as normal, etc.... well Sunday night, I went in their pantry and saw the big container of light salt. It didn't occur to me that they would have only low sodium salt in an effort to be healthy, and inadvertently make me feel like garbage all weekend. Lesson learned, I'll always bring my own on trips from now on, or at the very least check to see what's actually in the shaker!

I have been going for about 2 years for my coccydynia and TMJ, and he's amazing for that, but I haven't noticed any nervous system benefits

Thanks for the info! That's crazy that it showed up the whole time and he never noticed it. My cardiologist is also a dysautonomia specialist, so hopefully he will either be able to diagnose or refer me. I guess I'll find out in a month!

I just did, and I think I got a 4.... Is my cardiologist (who diagnosed my dysautonomia) the one I should bring it up to, or should I see a different doctor?