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bmahaney214

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About bmahaney214

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  • Birthday 10/10/1994

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    Female
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    Pennsylvania

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  1. Puppylove, I'm happy you and I can relate and have someone who understands but I'm sorry you have to go through all this! I just wanted to add that I left at the beginning of march and was out the whole rest of the year but was able to RETURN FOR A FULL DAY in August. I know all of this can be discouraging but it will get better!! For me I had to stop trying to do the things I use to...and even stop trying to be the same person. I had to accept who I have become and what my new limitations are. If I tried to live my life the same way as before all I would have we're bad days. I learned to voic
  2. Hi puppylove, I'm currently a senior in high school but during my sophomore year my POTS got so bad that I too had to go on home bound instruction and felt imprisoned in my own home.. And even my own body. All I wanted to do was go out with my friends. I felt like I was losing some of the moments everyone claims are the best in your life. Each day I would get up only to see my instructors and sit on the couch. Whenever I would try to go out I would feel horrible and have to go back home. I felt more and more alone as the days passed. Through it all I found one really good friend that I felt I
  3. I am seeing a cardiologist who treats many POTS patiets. (oh I should probably say I'm 16 so a pediatric doctor) like many doctors, he is good but his office is not. He actually complained to my face about having so many patients, and how POTS patients need more than others. I find that unexceptable. He said this after we said something about him taking a week and a half to call back about a medication problem, when he finally called back, my appointment, that was scheduled a month before, was in a couple days. At the apt. He he kept asking if the changes we made a couple days prior were help
  4. I took ritalin for about a month on the lowest dose.. Actually half the lowest, so 5mg twice a day, four hours after the first dose. At first it really helped me, but I started to feel like I couldn't sit still. I too was switched to aderall, 10mg extended release, but now I'm not really eating that much. I am taking mestinon(spelling??) for appitiete and disgrative problems, which was helping until I started aderall. Now I am steadily losing weight, which for me probably isn't good. I still feel a little anxious and jittery on this so we might have to look into other options. I hope you find
  5. My dr. Asked me if my feet or toes ever turned blue when I first met with him, of course that was right after the winter and I always had socks on so I didn't know. The next appointment I told him I realized my toes turn blue, and it actually happened when I was there, and I felt like he brushed it off and ignored it altogether. Now I keep realizing my whole feet and the end of my leg where they connect turn blue. Along with this they get tingly, but not always my feet, sometimes my calves are tingly instead. And this can happen in different positions, sitting with my feet down, sitting
  6. Now have a more specific answer to what you have, does it make any difference with treatment? I feel like, yeah it's great that they can tell you what type of dysautonomia you have, but if they are purely just a center for this they should be offering more. .... That probably sounds greedy haha but I hope you understand what I'm trying to say. -Brynne
  7. I saw Naomi's post about the study going on through vanderbilt and did a little research on the center Just wondering if anyone has gone here and if they think the treatment plan they prescribed to be benifical? This just seems like if was really a "one stop and your better" kinda thing, it's too good to be true! If you read under the for patients tab it says you go there, stay for up to three days, and then they tell your primary care doctor your treatment plan. http://www.mc.vanderbilt.edu/root/vumc.php?site=adc
  8. Thanks guys:) I do have netflicks actually but having a big family not many opirtunities to watch anything, maybe I should show them this and say it's part if my treatment;) and thank you, maybe POTS has made me age beyond my years..... My body certianly feels like it has!
  9. Christy, I agree with your son. Sometimes it's better to be away from all the high school drama and just focus on what I need to do to get better. Its funny to see what people come up with, when they have absolutely no truth behind them. All we can do is laugh, it's not worth getting angry over things that just aren't true. -Brynne
  10. Replace work with school, husband with parents, and kids with siblings, and I feel the exact same way. It's like as soon as things seem to get any better the always turn around and get way worse then ever before. I had to leave school and be taught from tutors at my home. Instead of your 3yo saying you should be better, I have my classmates. I kept being sick to myself. Only my family and close friends knew. So when things go worse and I was almost passing out in school, no one believed I had anything wrong with me. People still text me, almost 4 months after leaving, and ask why I just dis
  11. I take mestinon. It's meant to Improve muscle strength in patients with certain muscle diseases. It works by preventing the breakdown of a certian substance, acetylcholine, which is needed for normal muscle function. That's all off the paper that comes with the medicine haha I just take it to help me eat and have regular digestion. My cardiologist actually perscibed it for me. I, like your daughter, am a teenager. I was eating small amounts like her, just picking at my food. Now I have been eating more and actually getting hungry! The past week I've gone back to picking at my food, but don't k
  12. All I can say is thank you to everyone!! My problem *** talking to someone about everything is I don't want to burden them with my problems. I do have people to talk to and have before, but I feel if I keep complaining to them it will get anoying to listen to. I know I shouldn't think that way but I do. Maybe I'll ask my parents to look for a therapist. I really loved reading all your replys. Age doesn't matter, we are all suffering from the same thing, it's good to know there are people that understand. As far as Dyna kids, no I haven't joined but have been thinking about it a lot lately. W
  13. I'm 16 and have been suffering for two years. Sometimes I just get so frusterated! I feel like I'm loosing "some of the beat years" of my life. I feel so alone somedays, I feel like no one, except others with POTS, can understand what were going through. I have 4 siblings and they get frusterated because I need more attention sometimes, or I need special treatment sometimes. We go through a lot everyday. When I wake up, instead of being able to go to school and worry about social problems, I have to worry about what kind of day it will be, a good or bad one, and weather I'll be able to do anyt
  14. I have this problem too. My docotr perscibed me a medicine, that although wasn't created to treat this, one of the side affects helps. I can't recall the name of it at the moment but will reply again later with the information
  15. I get this too! it's not a full out panic attack but i get a nervous, fearful feeling. It makes it hard to concentrate on anything else.
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