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Everything posted by MelissaCrystal

  1. Oh man, poop fruits...that had me cracking up. Never thought of that before!
  2. 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.
  3. 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
  4. 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!
  5. 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!
  6. 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
  7. 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
  8. 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
  9. 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...
  10. 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.
  11. 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 yo
  12. 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.
  13. 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
  14. 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!
  15. 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...
  16. 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?
  17. 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?
  18. 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 thou
  19. 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?
  20. 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 o
  21. 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
  22. 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.
  23. 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 somethi
  24. 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 w
  25. 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 h
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