MelissaCrystal

Oh man, poop fruits...that had me cracking up. Never thought of that before!

I used to take handfulls of ginger pills and it would cut the edge off the nausea and at least let me get out of bed. But sometimes it was rough on my stomach.

I'm pretty sure most of the time POTS is a symptom of something---but there are so many causes, known and unknown, that most doctors search for a cause -after- diagnosing them with POTS. My POTS is caused by Dysautonomia caused by a connective tissue disorder for example, and we followed the clues from the symptoms and diagnosis' down to the underlying cause. So yeah, I don't think -anyone- should just stop at POTS, at least initially, because the underlying cause could be simple to fix (like anemia). But of course, if you spend too much money or time searching, then it's your decision to just treat the POTS alone and manage the symptoms.

A huge number of people with POTS don't ever get to the point of fainting, I'm one of them that doesn't faint. I could definitely get to that point, but I usually know when I'm pre-syncope and sit/lay down before I actually get to the point of passing out!

Do you like these results? Do you feel normal? If so, GREAT! Glad the BB's are working! I'm used to being annoyed at my results that come back normal, hah!

I think you should specifically find a dysautonomia/pots doc to do a one-time diagnosis with treatment options. To me you seem to fit it all, but it's good to have the diagnosis and a doctor to call in case of emergency. Just make sure it's a POTS doc, or else you may get the run-around for years, even if you fit the criteria =) Dysautonomia docs say that even a negative TTT can still be POTS/Dysautonomia because it depends on how the doctor interprets the data, and a lot of them don't know enough about all the criteria to make a correct diagnosis (even if it may seem simple to us ;p). My bp dropped to 40/20 for a while during my TTT and my doctor at the time still didn't think I had it---but when I sent the results to Karen Friday at Stanford, she was apalled at that doc's opinion and said it's all too common for docs to not believe in autonomic problems and just point to anxiety or other things. Anywho, I definitely think a TTT is worth it! I hope you find a great doc! Completely worth it =)

YES!! This is wonderful to hear, because this is how I've put my POTS into remission! A high protein diet with basically no carbs (they make me feel horrible). I think this is a HUGE key you guys. It is for me. I don't know what it is about meat, but honestly, it's been the only thing that has worked for me my whole entire life. Mostly chicken or turkey---that's basically all I eat, and I'm functioning like a normal person. I still get crashes, and I have symptoms that I doubt will ever go away, but I'm able to live a normal life because of my new diet. I have a job, a new boyfriend, and I'm doing everything for myself right now. I don't know what it is about meat, but there's something in it that fixes me...that gives me enough fuel of some sort to do everything I need to do. It's not "energy" it's just a certain type of fuel that I can feel my body needs. I've been trying to research it, and all I've found that I was missing before was that meat has creatine. I'm sure there is other stuff in the meat I need that perhaps I was missing, but I've heard that a lot of people who supplement creatine feel a lot better overall and they develop more muscle. I've always had problems developing the correct amount of muscle in certain places, and I dislocate my limbs all the time. I thought it was just because of EDS---but I'm such a borderline case because my skin isn't that bad. It's just my tendons and muscles that are bad. I'm wondering if I'm onto something here.... If you guys look more into creatine---it's a LOT like Florinef, which might be why Florinef works on a lot of us, but perhaps we're missing some creatine? I could be totally wrong, but I just bought some creatine today and I'm going to test it out =) I'll let you know if I feel a ton better or something. BTW-- I'm not going to be taking the full dose, I don't need to bulk up, I'm looking into what our body naturally produces and I'm just going to supplement half that amount to see if it makes any difference. I've already done extensive research on creatine because my last boyfriend wanted to use it, and I asked my doctor and everything and small doses are very harmless.

Vegetarians should take creatine supplements---look into it, wikipedia has some good info and resources about it---meat protein is SO important to vegetarians people with chronic health conditions that don't allow them to exercise or get proper muscle definition, and creatine is one of the reasons. Another thing that's cool about creatine is that it makes you retain more water, just like our precious Florinef. We don't need a lot of creatine---most are marketed towards athletic people to gain more muscle and have better workouts. We take smaller doses. Anyway, I think you should look into it. A healthy, responsible vegetarian/vegan is one who is able to supplement everything they're missing out on with their diet =)

Last time I checked, my level was 9, and I was supplementing =( I can't seem to keep Vit D in my system... It goes up to the 20's after taking a month worth of 50,000UI though, but goes down again without it. Btw, I've taken the 50,000UI multiple times, never does a thing to me. But that's just me. Sometimes it tends to help my constipation though lol which is good...

Don't take any extra doses, not worth risking heart failure. If you want to be safe, take a half dose to start off and taper it up again until you're at your normal dose.

I know that this may be horrible news to you, but I'm actually very glad that you were able to get somewhere diagnostically... if your Celiac Disease can be controlled, then maybe your POTS will go into remission. I think this is huge for you, and I really wish you luck. SO many people have Celiac Disease, so you're not alone, and a lot of these people are able to function very well. Have hope. The lifestyle/diet change is really really tough and annoying, but when you feel better I bet it will make the extra effort SO much worth it---especially if you feel better and no longer think of your routine/lifestyle as difficult!

Humidity is SO hard... especially when we create more of it in the bath lol I noticed that I get sick in the bath if my feet are submerged, but that might just be me. My feet are really sensitive to temperature for some reason. But yeah, I feel ya! I go through the same routine every morning, and everyone at work is shocked that I spend 3 hours every morning recovering from waking up and bathing.

I don't want to offend you, but the way he pulled data for that chart is a little unreliable... http://en.wikipedia.org/wiki/Joseph_Mercola If you read about Dr. Mercola on the web, he's known for being a conspiracy theorist who uses scare tactics to gain believers, so I'm not quite sure his opinion is any kind of fact about swine flu. But I don't want to argue about it, I just wanted to make sure you knew that about his reputation. One thing to note is that Dr. Mercola has been issued two official warnings from the FDA about putting the public at risk with his opinions on the use of drugs and medicinal practices.

I can see the connection in a lot of people, but I have POTS and don't have any signs of ADD or ADHD, but it's probably one of the many possible causes!

None of my docs have found an answer for this, 'cept more sleep and trying to minimize eye strain (with my glasses). I have weak eye muscles that tire out easily so most days, I can't see well at all...