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...

This discovery has been getting a TON of exposure, it's exciting. It was posted to Digg.com and got front page and made sooo many news sites. Isn't that great?

My Dysautonomia doc believes a connective tissue disorder (either a type of EDS or something similar to EDS) is the cause of my Dysautonomia because of my skin and joint characteristics. They're not as bad as a lot of EDS people, but they're just as problematic. I bruise very easily, which is a symptom of it. Would you say you have loose joints?

I lost my last long term boyfriend because he felt like he was always taking care of me in every way. He felt like the relationship was always "for me". I spoiled him emotionally and physically but he began to see me as simply needy, even when it was genuine. When we talk about it, and he actually steps back and looked at us, he really didn't believe I was needy---in fact he always used to say I was the strongest person he's met. And he also saw that I actually loved him and it wasn't just me latching onto my caretaker. But for some reason, he just couldn't stomach our dynamic. Even though his feelings weren't completely logical, he still just wasn't into us anymore. I think because his mom was a really needy person, really messed up lady... abused him emotionally. He never got over that and so anything similar to it really turns him off. So you're right, it depends on the person. This new guy seems to just feel sorry for me a lot. When I have a smile on my face, laughing about how silly it is that I hurt myself again, he just has to look all sad and worried no matter if I reassure him (he doesn't trust me, thinks I lie to seem like I'll be okay). If I get up too fast and have to hold onto something, he rushes over and says frantically, "are you okay?!?!!" I get SO annoyed, because these are things that never go away, so he's going to just have to calm down! lol I think it's cute, but I've been starting to show my annoyance. I keep telling him, "you know, when I tell you about these things, I don't do it so that you can feel sorry for me...I don't really like that reaction ;p I actually like laughing about it because life is ridiculous sometimes!" But that didn't exactly help.

I was told that CA law protects you as long as you don't go without insurance for more than 30 days...supposedly you can't be turned down by another company if you're a paying subscriber to another insurance. I was told this by multiple people but I'm not sure how it works and I'm not good at finding laws etc. Can anyone else confirm this? Anyone else know anything about it?

You guys are so wise and wonderful and I'm so glad I asked about your experience! I definitely see now that I need to do more work on myself, and how I see myself. I'm 23 so I still feel like I haven't accepted myself, Dysautonomia aside, so it may be difficult but I'm actually relieved to see that it probably isn't really him. It's definitely me. Which is a good thing! I have control over me---or at least if I work on it, I will. I have a lot of self-consciousness because I don't want to make people uncomfortable, and I don't want to drag others down in any way. It's difficult to get over that. But I do see now little ways I can change this. All your encouragement really helps. Yes, people who have it so worse are able to find true love---and it's probably because they have a healthy attitude about themselves. I don't. So I need to work on that, for sure. I'd love to be happy someday, and I'd love to make someone happy someday =) So this is worth it. I will work on it, I'm actually really optimistic right now. I had a productive day, and I read all your guys' posts and I'm really seeing myself now. Thank you! I can do this. I know I can---you guys can, so I can.

Hey guys, I just wanted to hear your honest thoughts about bringing someone new into your life. I care about people a lot, and I never want to drag anyone down, so the fact that I've been wanting to let someone in is really making me feel guilty and quite scared about what he really thinks. No offense to any of us here, but I can't help but ask myself, why would someone want to get closer to me when I'm ill with something like this? People are always worrying about me when they see a horrible bruise, or if I hurt myself picking up a small book (this is the EDS stuff), and also when I'm not feeling well, they tend to freak out a bit. It's sweet, because yes, when my heart is flipping out it's scary! Buuuut...it happens so often! Sooner or later they'll get tired of thinking of me as so fragile and hurt-prone, and just all around flaky and troublesome. And then when I get sick after exerting myself after doing something intimate...or the fact I have trouble spending the night because in the morning I'm deathly ill...every morning I have morning sickness. I've already embarrassed myself so much because of this stuff---and sure, they just pity me and show care, but what are they really thinking? (I'm talking about one guy in all of these examples...someone new..) I try to hide that I'm sick, I say, "don't worry, I'm strong ;p" a lot to make them feel better. I show confidence, etc. But I can't help but think I shouldn't drag them into my life because in a way, I'm asking them to sign up to be a care-taker of a sort at least in some fraction of a way. He already seems to be sad when I tell him something like, "Can you believe that I pulled a muscle in my back just now by coughing?" I was trying to make fun of my problems and be cute, but ehh...he just worries every time and looks sad. Wasn't my intention to make him feel that way. I'm always joking about other stuff, why can't I make fun of how silly my problems are? Every time he looks worried I laugh and say don't worry, I'm fine! I try so hard to seem like this isn't a big deal, but he still seems to be kind of wary of my problem. I might lose this one. I really really don't want to, but I think it's happening. I'll move on, but I'm not sure I'll know how to make this not happen again. I know us not working out isn't just because of the POTS, but us having awkwardness about my injuries and occasional crashes IS. I wish I could somehow get around that. What do you guys tell yourself to justify bringing someone new in? I'd like to think I'm worth it in other ways, but are we supposed to be completely independent? I won't give up on trying to be self-sufficient but sometimes it's hard in a relationship to do fun things or go out without involving the other person in the way you feel at the time. Sometimes I have trouble, it's hard to keep it to myself! Do I just need to find the right person who knows how to treat/deal with a sickly person? Or do I need to somehow master a way of acting or controlling the way they see me? Maybe it's both... Just wanted to hear your thoughts or if you could relate! I've been pretty down lately, mostly out of loneliness. Trying not to relapse/get stressed over it though, so I've been posting here and it's helping =) I'm glad we're all so similar. I've read a couple threads similar to this topic in the past but I can't think of the right key words to bring em up in the search, so I thought I'd bring it up again.

Yeah we all have our low points, and sometimes we gotta ask why again so that we can take the steps again to acceptance. This is definitely the place to ask why =) Everyone has an answer for that type of question here! But if you feel you are really struggling with accepting a chronic illness, therapy can help. I can't say it's helped me, to be honest...but just posting here and having at least 1 friend (my mother) to talk to, reaallly really helps. Otherwise I'm pretty cynical about having Dysautonomia.

That poem must make you feel so loved and understood =( That's so touching. My mom is the only person who understands what I'm going through in my life. We're definitely all in this together, trying to piece together a life we can enjoy in some way! We're all looking for happiness, pleasure, contentment. It's harder for us Dysautonomia people, but we value life much more than others, and I'm somewhat grateful for that. I see beauty in living that others do not. But I also see much more misery in our existence than I think I should. But we all have to keep living and seeking out something that makes this all worth it =) Because it is worth it. May not seem like it right now, but it will all be worth it.

I definitely feel like I'm the responsible one, but it's probably out of necessity! I have Dysautonomia worse than my brothers because I am female, which is supposedly typical. They are definitely self medicating, going off of what is easy to do rather than doing any work or lifestyle changes to get healthier. My lifestyle change was HARD. I have to eat PERFECTLY and have a meticulous routine and exercise now (which is haarrrrrd). But I had to do it to become independent again, and it was really important to me because I wanted to find another guy. Basically sex was my motivation lol I wanted to get better so I could actually find that kind of fulfillment and be healthy enough to actually DO it. It sounds bad, but really that's what's driving me right now... My brothers haven't found anything in life to move them yet. My brother has a girlfriend, and right now that's his only reason for going to school, but they're breaking up soon and he's just going to go back to an unhealthy lifestyle. The younger one is basically just a bum, living off of my family. Pot definitely doesn't help with their motivation problems, but it's treating their depression for sure. I have a very depressed family, especially growing up with the abuse from my disabled dad. He had no life but to make ours miserable ;p It was tough. So I empathize with my brothers, but I kind of wish they'd actually FEEL the depression and let it motivate them to make changes in their life, rather than just medicate it away and do nothing because they're high and don't want to put too much effort into anything. It's tough, not sure how to help them anymore. But I do hope they follow my example. I've tried so hard to raise them right, because my mom was the worker and she had her own stuff to deal with while we were growing up. My brothers really look up to me, and they really love me. It's wonderful, but they're in a bad phase right now. I hope they get out of it without taking too many people down with them---like my mom, financially. And my ex. =/ So yes, pot is like any other medication. It has its side-effects, and takes a lot of responsibility to make sure the side-effects and psychological addiction doesn't effect your life. Takes lots of moderation and you have to be careful not to abuse it.

I unexpected got a little better this year, but life is still a huge struggle and I feel too, that I've lost all my dreams and ambitions. My life revolves around just getting by now, and just finding something that makes me a little happy. I haven't been successful yet, and I get down a lot...I kind of know I'm going to have a hard life, but if I can find someone to love and have some kind of career that I feel good about, I think things will be okay. Even if I have to go on disability due to relapse, I'll still use all my energy to search for happiness. I just have to find what makes me happy first---right now it seems like nothing but a guy (which is sooo dependent) but I'm just going to roll with whatever pleases me if I find it. No more shooting high for me, because I keep overworking myself. But getting through each day is enough for me right now. I'm 23, it's pretty depressing to feel this way at such a young age, but I was so much worse a year ago so I just have to keep telling myself that things will get better, and even if they get worse, I may still be able to reach happiness somehow if I don't give up.