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About KLK1305

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  • Birthday 01/02/1987

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    Dayton, OH
  1. Tee601 I know just how you feel. I am one of those that gain weight when my symptoms are at my worse. Seems like everyone else loses around here. I don't know about how much you gain, but I gain roughly 30-40lbs at the onset of my symptoms. I stump my doctors with this because you would think I would gain overtime when I am sedentary. But I don't. I do keep it on though the entire time I am down. I normally drop the weight within 2wks of feeling better. But now this time around, I am doing better (I would say since the end of April) but have alot more symptoms that are still occuring than in t
  2. Thanks guys for all the responses I read them all on my way up to Toledo yesterday & was happy to find out this was more common than I thought. When I showed Dr. Grubb my last few blood work results he told me to not worry about it & that I just need to get in touch with an endocrinologist here at home to treat the hypothyroid (even though each test differs- one high, one normal, and two low). Said that more than likely treating just the thyroid will lower the cholesterol based on what he has seen with other patients. I am very happy to hear that cholesterol meds probably aren't going
  3. Hi guys! I did not realize that it had been since January that I have posted anything! Gosh time just flys by doesn't it? I figured it would be good to do an update since last time I posted I had just returned home from my first appointment @ the University of Toledo. My love of Toledo, Bev and Dr. Grubb are still as much as they were that first day (if not more now!) Since January I have been up there 2 more times, with my next appointment being tomorrow. They have been playing with my meds over these last few months. When I went up there I was only taking Zoloft & Florinef. Well at this
  4. Hi everyone!! It has been a few months since I have been on to post anything, and I now have the greatest thing to talk about. I'm sure many of you understand that it's just frustrating when the only thing you can talk about sometimes is the crappyness you feel, the frustration with doctors who just don't get it, and the wish to just feel normal again. When I was first diagnosed last summer I met a girl who was also diagnosed with POTS & NCS. She was one of the lucky ones who had been diagnosed very early on, had extremely knowledgeable doctors, and has had a lot of her symptoms managed f
  5. Hi all! After finding this forum & reading several posts & seeing others diagnoses, I began doing a lot of research online. I really feel that I have underlying issues that could either be causing my POTS & NCS or making it far worse than what it could be. My problem is I do not know where to begin on approaching my team of doctors about trying to see other specialists and what tests to have. I absolutely love my cardiologist and neurologist here at home, though they are not very familiar with my conditions. I know that if I go to them with this they will be more than willing to re
  6. Many times after I pass out, when I come to I have a horrible headache and throw up or if I get one of my horrible headaches by itself I sometimes throw up as well. Doctors just told me it was due to the fluctuation in bp <Who knows> Maybe we should both check ours when we have one the next time and see what it is doing.
  7. I think that I am experiencing some nasty side effects from Florinef. I have only been taking it for 3 weeks now, .1mg, 3x a week and I know that isn't alot. But within a few hours of taking it I am having bp spikes up around 130/79 (normal for me is 90/60ish) and my heart rate is going crazy. Then my tremors are being FAR worse than normal. When it starts doing this I have a headache around 10 on a scale of 1 to 10 and sweat profusely. I am going to the doctor tomorrow and hopefully we can figure something out. Also Friday7 if you go to NDRF.org there is a handbook for people like us. If you
  8. Chrissy, I am sending lots of hugs your way!!! I know EXACTLY how you feel. I too am a 23yo that has been self taught in school since 9-10th grade level and I also have pretty much been left to figuring a lot of things out on my own with these illnesses because I am always too complicated for doctors. I know how horrible and frustrated and overwhelmed you feel. Know that you are not alone. The feeling of being washed out both physically and mentally is so hard to handle sometimes. <HUGS> and hang in there! ~Krissy
  9. My opinion is that there probably isn't a 100% recovery (though I definitely wish there was). I have to agree with Tearose that there are remissions and relapses. I myself have experienced this. I wasn't dx until this year, but all of my symptoms have been the same for almost 10 years now. I had symptoms everyday for 5 years, then nothing but maybe 15-20 "episodes" that just lasted a day or two for almost 4 years, and now this year I am pretty much back to where I began. I definitely believe that everyone is different, and what works for one probably won't work for another. I have personally
  10. YAY! That is great!! It is so hard to find doctors that you actually like! They are sometimes few and far between!
  11. Lieze: I see my cardiologist here at home on the 18th of this month. I have my one here at home and one at Cleveland. I definitely plan on talking to him about it and voicing my frustration. I honestlydon't even think the healthcare providers have a full understanding of "where this is going". I talked with my one nurse today about it (which still left me frustrated lol). The rehab place I go to has only had 3 other girls with this diagnoses, but we have all been entirely different. I think thats the biggest problem is what works for one doesn't necessarily mean it works for another. I honestl
  12. Okay.. I am so frustrated beyond belief and I have no one around me who understands and I know you all will. I have POTS/NCS. I am currently doing cardiac rehab 3x a week. I do three different machines @ 10minutes each (although it takes me over two hours to do that lol). I have been doing this for almost a month now. My doctor at Cleveland belives in it (though many doctors I have either talked to or seen comments online do not believe in it). I am not saying I necessarily believe in it or don't because I feel like crap no matter what I am doing. The nurses at my rehabilitation center are ab
  13. I take Seasonique (which is also where you only have a period every 3 months). It has really worked amazingly for me. I went through a ton of different ones since I was 14 trying to find one that has worked for me and my symptoms. Finally been on this for two years now and my POTS symptoms are not worse while on my period. Hope you find something that works for you.
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