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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 voice my concerns with my doctor, adapt to my energy levels...and most of all I learned to admit when needed help. Instead of getting upset about what I couldn't do I learn to be proud of what I could. So no I couldn't go to school, I couldn't see my friends and I couldn't go out, but I could complete my school work, I could use a creative outlet to release my thoughts, I could still be with my family, and still laugh and be happy. For me my outlet was writing. I often wrote my story to diagnosis and treatment over and over again each time in a different way, it let me cry and be sad but when I finished writing it I could put it aside and push it out of my mind instead of fixating on it and bottling everything up. The hardest part of it for me was I tried to pretend like I was ok. I didn't want to accept it, I didn't want to cry in front of other people, I didn't want to admit I wasn't "strong enough" to handle my problems on my own. I learned though, that it wasn't a matter of being weak, I was stronger than I thought, I was dealing with such an isolating condition on my own. That takes more strength then being healthy and happy. All of us with POTS are so strong. Yeah that sounds ironic because most of us are too weak to do much but we have the strength of all of us as a community together. When doctors don't have the answers we have turned to each other for support. We find joy in other POTSies accomplishments and sorrow in their defeats. Know that we can relate and understand what your going through on a level not many others can. Well I got a little off topic but I just wanted you to know I am doing better and have gained back my independence. It will get better but if you need support, help, advice or even just a good cry we are all here for you!!! Again if you need anything let me know - Brynne
  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 could truly lean on. I would go to their house on some of my good days because I knew they understood that I was sick. They would let me just lay on their couch and hang out like that was totally normal. They let me vent and cry whenever I just needed to get it all out. Most of all, they helped me accept what I was going through. Remember that just because you can't go out doesn't mean you can't see your friends. True friends will be by your side even when your feeling your worst. Sadly I found out who my real friends were through it all, but at least I knew I had the support of the ones who stayed. One thing that I wish I had was someone with POTS to talk to. I felt so isolated because no one truly understood me, but that's why I joined DINET, because we all are going through it together. And I know that I'm never alone. The one thing that truly gave me my independence back is compression stockings. They enabled me to get up and walk around and attend school once again. They weren't a cure all, but they did help A LOT!!! I would 100% recommend talking to your doctor about them. If you ever need someone to talk to that has gone through the isolation of home bound and understands what your going through please please please don't hesitate to message me! I wish I had someone like that when I was dealing with it. - Brynne (I'm sorry if this isn't too inspirational, things will get better, I promise! Just keep your head up and don't stop trying)
  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 helping....HOW WOULD I KNOW, YOU DIDNT GIVE ME TIME! ..... oh sorry starting to rant haha anyway do you have any recomendations on who to see? I live in Pennsylvania by where pa, md, and de meet. My main concern is, school starts in not too long and right now I feel like I still couldn't go back (left three months early and have been almost completely homebound for te past four months) so I need someone who wouldn't take months and months to see, but any suggestions are welcomed! Thank you so much -- Brynne
  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 something that works for you! I wish this condition was simpiler and we all could get the same treatment
  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 with my knees bent and my feet on the sofa, and a few others that are hard to describe. My feet looked so blue the first time I realized, they looked the color I would imagine a dead person would be. It was creepy!! I also feel like if I stand for too long, like after taking a shower and getting dressed, my knees and end of my thighs turn purpley/bluish. Do any of you have this?
  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 disappeared. When I say I'm sick, they all say "STILL?" I agree it's frusterating!!! Just know your not alone, and we're all here for you. We may not all know eachother personally but I think we have a connection unlike anything else. We can honestly say "I know how you feel!" and that sometimes means more than anything a friend can say.
  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 know why this is. Also make sure your daughter drinks more. I drink usually around 90 oz a day and take 1gm salt tablets twice a day. I think the fluids and salt are to keep up blood volume, I'm not sure, but I know the doctors keep pushing the fact that I need to do this each day. I hope your appointment goes well! Tell your daughter we're all hoping she feels better. Best of luck -Brynne
  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. With crying, I guess since I'm so vulnerable right now I feel like showing someone I cry will make me seem weaker. Again, I know I shouldn't think this way but I do. I cry alone, in the shower, when my siblings were at school, whenever no one would see me. I share a room so easier said then done. I know keeping everything in isn't good, and will only make me feel worse. I don't really have hobbies, though multiple friends of mine have told me I should take one up. I don't know what to do. I read, I guess that could be considered a hobby. And I've been thinking of taking up writing. Maybe then I could get out some of my feelings. I really appreciate hearing all your stories. Thank you so much for making me see I'm not alone. I will definately try to change my ways and tell people how I feel. Again I typed this on an iPod so please excuse any errors. Thank you -Brynne
  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 anything at all. I had to stop attending school. I've barely left my house in three months. Now I'm starting to even fear going out and not feel well. I hate all this! Up until now I've kept these feelings to myself, I've felt like aknowledging my saddness, frustation, and fear wouldn't solve anything. Now I just want to know how all of you get past these feelings, or if you have. I've typed this on my sisters iPod so please excuse any typing mistakes or errors as it is hard to write long messages on here.
  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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