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Eillyre

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Everything posted by Eillyre

  1. Hi Michele! Just thought I'd add my experience with Midodrine. I'm so glad that it works for someone -- wish I had been one of them! Unfortunately, I was practically bedridden for two weeks on the stuff. I had just suffered a big downturn in health despite changing doses of Florinef (which had initially made some improvements in quality of life), so my cardio prescribed Midodrine. After two weeks of misery (I don't remember much of the experience except that I was afraid I wasn't going to die -- my mom says I looked like a complete zombie lying in bed), the cardio was getting a bit worried, so she took me off of it. From what I've read about Midodrine, I and my reaction are part of a small minority -- most people seem to respond really well. I guess it's just another one of those (many!) things you have to try for yourself -- there's nothing like dysautonomia to make you feel like a real individual, huh?! Angela
  2. Thanks for the info Kathleen! I didn't know about the re-testing. I wish they had explained the process to me a little more in depth. Glad you found your visits helpful! Angela
  3. Welcome back, Hayley! Hope you were able to get some answers, and not too drained after your trip. I'm terribly jealous of your being in England -- I've always wanted to go there (dig down to my roots and so forth)! I can't say that I'm bedridden for weeks (except on Midodrine) -- for fatigue, etc. I've never had to stay completely flat for more than 2-3 days at a time. In my earlier POTS stages, I would have weeks of miserably-acute symptoms, a more functionable stage, and then things would start to crumble again. After tests, medical procedures, draining events (e.g Thanksgiving), etc., I usually end up in bed for a day or two. I hope your question is more rhetorical than issued out of personal experience. Stay well! Angela
  4. Sorry to hear about your trouble, Amy! I'm not on a beta blocker (doctors are worried it will drop my already very low HR), but I also have asthma. It's never really a problem unless I get a cold or some other respiratory problem -- Albuterol & Flovent to the rescue! Nowadays, the times that I have trouble breathing are when my heart is racing madly or beating so slow I have to breathe very purposefully (otherwise I feel like I'm going to stop breathing altogether). When that happens, my whole body aches and feels like lead -- I can barely get out of bed sometimes. My younger brother had a good laugh one evening I had that trouble. We were sitting on the couch waiting to watch a movie. My heart had become extremely sluggish and my arms felt like they belonged to some huge Rodin bronze sculpture -- I couldn't move them enough to pick up my spoon to eat my cereal. I was feeling so very hungry, but all I could do was stare at my bowl, almost trying to will the spoon to my mouth! Of course, my 17-year-old brother settled himself back more comfortably in his cushion, and, with a little smile, proceeded to watch me eye the bowl as if he were studying some poor little white mouse in a maze, trying to find a way around a dead-end (he's a very sweet kid, by the way -- just likes to tease me!). There are times I wish I was like Elizabeth Montgomery from Bewitched and could do whatever I wanted with just a twitch of the nose! Mornings are usually a bad time for me and I frequently am so exhausted that getting up is a major battle. Those days, I'll usually force myself out of bed, only to collapse (pjs, slippers, messy hair, and all) on the living room couch -- every once in a while, I'll treat myself and just stay tucked in. Sorry I'm not much help -- I'm still trying to find meds that help, too. Midodrine made me worse than ever, and Florinef worked well initially but has no effect now. Hope you find some answers soon. Angela
  5. Dear Emily, Thanks for the welcome! I have to admit, I feel like we've already practically met -- I've read so many of your posts (very nurturing and always good for a smile & laugh when I need one! )! I am so thankful that I was able to find this site! You have all been such an encouragement to me. Yes, it's been a very tough 8 months...I almost feel guilty saying so knowing that the rest of you have gone through years of this craziness. But my career was really taking off, I was getting approached with job offers without having to audition, enjoyed city life...and most of all, I just loved to get lost in music and dance my heart out. Was I hypermobile? Oh, I wish...how I wished! Standing at barre with people like Paloma Herrera and Julie Kent in class at ABT could be a bit discouraging if I was having a bad day...I'd see my positions and think, "Hey, that's no too shabby." Then I'd see all these other legs miles above mine, and feel like crawling away behind the piano! I have beautifully arched feet, though, and a very flexi back! There is some justice in the world! Hopefully, in a few Nutcracker seasons down the line, I'll be back onstage -- or even just back in the studio -- or walking around the block?! Thanks again for the welcome! Angela
  6. Best of luck, Goldie! I'll be praying for you! Can't wait to see you back! With love and hug, Angela
  7. Have to agree with you on keeping copies of your paperwork, Dawn!!! I have three sets in different places! You never know what might happen! While I have not had to deal with lost paperwork yet (knock on wood!), I'm not ready to take the chance. I've had trouble with inter-office communication, though. I'll have a test done at a hospital and give the my cardio and neuro fax numbers, but three weeks later, the results still have not been sent. One of my jobs today is to get my VO2 stress test results sent (a second time!) from UPenn to my cardio so I can get a copy. I know these places are busy, but I really wonder how so many things can fall through the cracks?! I am thankful that they do exist, though -- if I was still living in West Africa (where I spent my ages 3-10), I could never have received even a fraction of the medical care I do here. While I consider Niger my home and love the country so deeply, I can't say much for the medical care -- the country is far too poor to be able to provide what's needed for basic needs, let alone the bizarre conditions that we dysautonomials (real word?) are so familiar with. Better luck with the records! Angela
  8. Dear Dawn, Yay! I'm so glad to hear about your success in getting an appointment. I've been waiting to get into NIH, but it's taking too long, so I've just started the Mayo process. I may be able to get in the back also -- at this point I just need to be seen by someone with a lot of experience in dysautonomia & POTS. Sorry to hear about the scuffles with the neurologist! I had a great neuro, who has since moved out-of-state, but have had very stressful and frustrating experiences with some of the other doctors I've been dealing with. It's taken over 6 months for my cardio to really understand that yes, my condition is severely disabling in terms of lifestyle. I don't know how that was not clear from my continually telling her that I had to move back in with my parents, had to stop working (ballet dancer), had trouble getting breakfast ready for myself ...you know the drill! Try not to stress about the appointment -- I've only heard really good things about the doctors at Mayo (although I'm told that follow-up is not their strength), so I'm sure this is going to be helpful visit. I would suggest getting all of your records, test results, etc. well-organized so that the doctor's time is spent talking with you rather than wading through a formidable pile of paperwork. Maybe it's just the perfectionistic tendencies surfacing from my gene pool, but having a very tidy, easy-to-consult medical file always makes me more confident about an upcoming appointment. Someone on the forum (don't recall who, off hand -- everyone has been so supportive!) suggested keeping a binder with separate tabs for various sections (neuro tests, cardio tests, neuro consultation notes, meds, medical history, etc.) -- that's what I'm working on putting together now. I can sympathize with your dread! I can recall big auditions that I enjoyed over new medical appointments. Hope you find some answers -- I'll be praying for wisdom for Dr. Whiteman and peace of mind for you. Safe travels! Angela
  9. Hi Jody! I'm (almost) in the same boat! I've only been waiting for 4 1/2 months to get into NIH -- I even told them I would be willing to just go for a 4-6 hour consultation since I had been told about the waiting list. I had seen an electrophysiologist at UPenn (with limited experience in POTS, but some nevertheless) who diagnosed me with POTS, so we went ahead with treatment knowing that it would be a while before I could be seen at NIH. Unfortunately, I had really bad reactions to midodrine, florinef no longer really makes a difference, etc, etc...so I'm back to waiting for new ideas. I haven't been impressed with communication at NIH -- the doctor's secretary that I've been in contact with has been very nice, but I feel like it's pulling teeth to get any time estimates. I'm told that I'll definately be called in two weeks to let me know when the doctor will see me, but of course, three weeks later I have to call myself and try to get hold of someone ...you know the drill, I imagine. I've just started taking steps to get into Mayo in MN -- probably another long wait, but maybe shorter than NIH. At this point, I have to see someone to get some new ideas for treatment -- nothing else is working. I would say definately start treatment now, because there's no telling how long NIH will take. If you find something that works while you wait for the study, hey, enjoy feeling healthier again during that time. If you can't, at least it's useful information for the doctors at NIH to know. Sorry that you're having such a frustrating time with all this -- hope we can all be seen soon! With love and a hug, Angela
  10. Dear Mary, I'm so sorry to hear this news -- what heartache! I can't imagine what it must be like. I wish so much that I could be there to help you in any way that I could! If there is anything that you need help with, please, let us know. Is there anything that your daughter would enjoy that I could send her? I would love to mail a card and package to try to brighten her day even a little. I'm relatively new to the whole realm of POTS troubles, so I don't really have much in the way of helpful medical advice. I'll be praying for wisdom for you, your husband, and the doctors, as well as for peace of mind and body for all of you suffering there. With love and prayers, Angela Kendall Park, NJ
  11. Hi JLB! Sorry to hear things have taken a downturn. I'm riding through a rough patch at the moment, too. At the risk of sounding repetative, I have to agree with the others about especially taking care of your physical distress -- for myself, if I let that slip (as I'm now recovering from ), everything else is so much harder to deal with. I'm glad you chose to tell us about your difficulty, especially since you don't feel you have much else support to rely on. I'll be praying for peace of mind for you and wisdom in treating yourself and the stress situation. Keep talking to us -- we all need help at some point (that's why we've all joined the forum, right? Sending some cheery thoughts your way! Stay strong and don't give up! Angela
  12. Blackwolf, I'm so glad that you're able to close this chapter of the ordeal you've been through. I can't imagine what it's been for you. I'm happy you're taking care of yourself and giving your body and spirit some healing time. My prayers are with you and your family for peace and wisdom in how to deal with the change in life that comes with the courts decision (especially as regards your daughter). Keep us in mind if you need to talk or anything else. With love and prayers, Angela
  13. I'm SO proud of you Emily! I can identify with all your feelings of embarrassment, doubt, frustration over the "and what do you do" questions...the whole nine yards! I was so encouraged to hear what a wonderful time you had, too. I've been invited to a big holiday party a friend is holding this weekend (my very first since being diagnosed with POTS earlier this year), and I'm rather sorry to say that I've had my doubts about going. I agreed to go, and look forward to it so much (actually being out with friends, meeting new people, etc.), but I couldn't help but dread some of the same things you mentioned. I never feel like I'm a normal 21 year old anymore....dance career pretty much shot, trouble studying due to "cognative disfunction" , difficulty just walking or getting breakfast, all my friends away at college, etc. I'm not depressed by it (although I do break down in tears of frustration at times), and I am trying to find ways to be useful to others and productive, but still....You know. Your message was such a great reminder to me to remember that I can go out and have fun with people my age, feel pretty, and help dispell the "it's all in your head" myths floating around society. Hope your post-party crash is quick and not too dreadful. Thanks again for sharing with us!
  14. Happy Birthday!!! And congratulations on the wonderful news about the adoption!!! I a friend of mine made the same decision to adopt a baby from China while struggling with major health issues (recovering from breast cancer, battling lupus, and more), and, though she was concerned about not being able to have enough energy to put into parenting, found that it was one of the best decisions she ever made. She eventually adopted a second baby, too. She's been a terrific mom to the girls, despite trouble with fatigue, etc.! For the practical day-to-day effort involved in raising a family, my friend found that she was able to find creative ways to work around her physical limitations. The girls have enjoyed a fun childhood that many kids with "healthy" parents cannot claim, as well as grown up with a keen sense of compassion for others, conditionless love, patience, and perseverance stemming from their experiences with their mom's illnesses. Remember, even on your worst days, you'll have the love that is essential in nurturing a child. Nothing can take that away from you. Your baby girl will always have that, and treasure it more than perfect and elaborate meals, an immaculate house, and endless trips to the toy store. I can remember sitting on my parents' bed with my four siblings watching my mom, at the feverish temperature of 104 from malaria, turn pages on a storybook for us with shaking hands. We grew up with so much illness in the house that before age three, I completely understood that she was doing the best she could. I only loved her the more for thinking of my needs while she was so very incapacitated. Your daughter will cherish your thoughts and efforts and sacrifices for her. Thanks again for sharing your news! Keep us all posted! I'll be praying for your health and wisdom on this new endeavour!
  15. Thanks for the input Ernie and Gena. Your information will make it easier to prepare for the trip. I especially like your binder idea, Gena, and the tip on standby! Thanks again!
  16. Dear Hayley, Hope things go well for your visit. Still in the midst of trying to figure out my POTS case, I can sympathize with your fear and frustration, but am glad to hear that you are not giving up. I'll be praying for peace of mind for you and wisdom for the doctors. Happy Thanksgiving and let us know how things go. With love, Angela
  17. I was initially diagnosed with POTS about four months ago by a doctor at UPenn. Since then, I've been trying a variety of medications while waiting to get an appointment at NIH. Nothing that I've tried has really made a significant difference in my symptoms and my condition is slowly getting worse. I'm in the midst of scheduling an appointment at Mayo, but wondered what exactly to hope for/expect from this visit. Any ideas as to what you have experienced with similar trips? What usually results from them? I would like a more definite diagnosis as well ideas as to what to to do get back to a more normal life. Are there questions that I should ask that I might not think of? I'd love any advice you have! Thanks for listening!
  18. Thanks for all your responses! It is especially encouraging to hear that you were able to get back to fitness/activity. It would be such a joy to be able to dance again! I live in mid-NJ, not far from Princeton, and am currently still looking for a POTS doctor in the area. I haven't checked the list of MDs at this site, but will do so as soon as I finish this posting. I'm glad to get your feedback on Mayo. Since this is all so new, I'm not entirely sure just what to expect from my visit there (or any other hospital for that matter). I'm going to make a separate post about that. Thanks for your help and wisdom!
  19. Thanks Gena! Haven't tried licorice root yet? How does that work? Sorry, I'm still trying to get a good handle on what the syndrome is, let alone all the the treatments for it. I'm glad that you're having such a positive experience with Dr. Kusumoto. Sounds like someone to look into for me. And thank you for relating your experience with activity -- it was such an encouragement! I have yet to meet anyone else in my area who has experienced, let alone heard of, POTS not including the diagnosing MD. After spending 8 hours a day dancing, it's hard to do so very little. I'm just taking it one day at a time and being thankful for what I can achieve. God is merciful and so very generous!
  20. Hi! I'm new to the forum, having just been diagnosed with POTS this past September. The doctor who gave the diagnosis has had limited experience with POTS, so he recommended I see a specialist. NIH has been taking too long, so Mayo was suggested. Any advice? Emotionally I'm doing pretty well, but it's frustrating seeing my symptoms only continue to worsen bit by bit without many effective ways to combat it. So far meds have either been ineffective or made my symptoms significantly worse. I was a professional dancer until this came on -- now I'm having difficulty just getting breakfast ready for myself in the mornings. I'd like to try to get back to more normal life if possible. Thanks for your input and wisdom! Angela
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