Alicia479 Posted May 19, 2005 Report Share Posted May 19, 2005 Hi! I was just diagnosed with POTS after being severely ill for some time now. It took going to the Mayo Clinic in Arizona for someone to figure out what was wrong. I had been seeing a neurologist in Seattle since October because my legs shake so much that I cannot walk. I have been in a wheelchair since February so I am so happy to finally have a diagnosis. I have had a resting heart rate of 100-130 for the past two years but the doctors always overlooked it. I am now on Midodrine, salt pills, and lots of fluids. They also gave me compression stockings to wear. It seems to be helping as my tremors have become less severe. I am a 19 year old freshman at Seattle University but have had to take this quarter off. I have so many questions as I have no idea what to expect for my future. I am trying to decide upon a career that will be okay with this condition but I am not sure what I really need. ANY advise would be great. Also, are there any people on this forum from Washington or Oregon? I am trying to find a doctor up here but I am having a really hard time. Again, I would appreiciate any advise. Finally, I was wondering if there was anyone on this forum who was around my age (19). I would love to speak with someone who understands what this was like. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 19, 2005 Report Share Posted May 19, 2005 Outcomes vary. Those with sudden onset have a better prognosis than those who have symptoms from early childhood (that's me). This topic has come up many times before, so consider searching old posts on "prognosis", "recovery", etc.I'm sure you'll get and eyeful!As for speaking with those who understand...well... that's about everyone here. I hope you find many friends and much support. Nina Quote Link to comment Share on other sites More sharing options...
Ernie Posted May 20, 2005 Report Share Posted May 20, 2005 Hi,Welcome ot the Forum.Maybe you could look at the old posts for job opportunities. We discussed it a few weeks ago. It think it's called something like: What job do you have? or something similar.Ernie Quote Link to comment Share on other sites More sharing options...
PattiL Posted May 20, 2005 Report Share Posted May 20, 2005 Hi Alicia,Welcome to the Forum. My daughter (Chrissy) is also 19 with POTS. She was diagnosed when she was 15 1/2 and has improved greatly since then. She just had her wisdom teeth pulled on Mon. , so she's not in a mood for much of anything right now, but if you'd like I can have her e-mail you. She's just finishing her associates degree from our community college and will be staying on campus at a university nearby in the fall. You may have quite a bit in common. Chrissy has decided on Early Childhood Education for a career, I think she should follow her dreams, BUT I've also told her she should probably go to the career counseling office of her college for advice. I would think there's other things she can do (career wise) with this degree, but she should make sure if POTS gets in the way. We're from Ohio.This forum has been very helpful to us both. Read past posts and ask any question and someone is bound to either know the answer or send you in the right direction!Patti Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted May 20, 2005 Report Share Posted May 20, 2005 Hi!!! welcome to the forum.Sorry that you have pots, it is hard to deal with I know. I am 23 and have been living with pots since I was about 12, and was not diagnosed until I was 20.I was in college, up until about 6 months ago. I was going to be a medical transcriptionist, but my illness took a turn in october and I was in the hospital for almost a week, I finished up the remainder of the semester from home and then I took some time off. I am so close to finishing school! Just another 7 classes to take and I get to graduate! It was a difficult decision to make, but Now I think that I made the right one. At least for me if was right every one is different, when it comes to there level of functioning.You know that you can look into online classes to, if you dont want the hassel of trying to get to and from school, and trying to combat pots, and trying to keep a regular schedule.Online can be much easier on you, physcially. Its worth looking into.I hope that you find some relief with your symptoms, and that treatment works out well for you! please if you want to talk you can email me at freedombutterfly97@yahoo.com its always good to talk to somebody about this.You will find this forum to be very supprotive and helpfull too!Linda Quote Link to comment Share on other sites More sharing options...
steph37822 Posted May 20, 2005 Report Share Posted May 20, 2005 oops Quote Link to comment Share on other sites More sharing options...
morgan617 Posted May 20, 2005 Report Share Posted May 20, 2005 Hi Alicia, I'm an old hag, but have been sick since before the age you are now. I worked until 2003 however. I was a nurse. I am from Spokane, and by the way welcome! There are no doctors anywhere around here that I or my primary, who's great, know of. You will get lots of info off this site and lots of your questions answered. It's also a great place to vent. morgan Quote Link to comment Share on other sites More sharing options...
Alicia479 Posted May 20, 2005 Author Report Share Posted May 20, 2005 Thank to you all for your advise. This whole thing has been so confusing and frustrating! Patti- I hope your daughter is doing well after having her wisdom teeth taken out. I am also interested in going into education but have been unsure about how my energy levels would be. I looked up the Dorm Life forum and noticed she is planning on going to a catholic university. I am also attending a Catholic university here in seattle and have been so impressed with their support. I have been very lucky. The dean even calls me at home on Sunday nights to check in with me to see how I am feeling! I hope she has as much support at her college choice. Quote Link to comment Share on other sites More sharing options...
briarrose Posted May 21, 2005 Report Share Posted May 21, 2005 HiI live in Portland. After exhausting my possibilities here in Portland for a doc, I looked up at the U of W as they are a top notch medical school in the Nation. I haven't been able to find anyone professionally trained in Dysautonomia or POTS. I travel to Ohio for my medical care. I'm happy to talk to you anytime.Steph Quote Link to comment Share on other sites More sharing options...
ethansmom Posted May 21, 2005 Report Share Posted May 21, 2005 I just wanted to say welcome! It can be really tough to manage school and careers with this condition, but this board is a great place to come for support. I was also 19 when I first became ill, now at 23 I have finished my Associate's Degree and am working on my undergrad. I have since become a mother and am functioning at about 75% of the 100% that I was before I ever got sick. There are some days that are harder than others, and our outcome defintely vary, but overall it seems that most people experience SOME degree of recovery over time. I have always beleived that education and support is the key to functioning at your best level- the more we know, the better our chances are. It sounds like you are on the right track, and I really hope that you begin to improve with time. Hope to see you here often with an update on your progress! Quote Link to comment Share on other sites More sharing options...
luckygoat3 Posted May 21, 2005 Report Share Posted May 21, 2005 Hi,My name is Susie, I see your 19, i am too. If you want to email me or PM me feel free too. I would also suggest DYNA Kids, they are for kids and young adults w/ dysautonomia, which has been sooo helpful for me. susie Quote Link to comment Share on other sites More sharing options...
Eillyre Posted May 23, 2005 Report Share Posted May 23, 2005 Hi Alicia! Welcome to the family!Sorry to hear about your trouble -- it's so hard to be out of commission in what is supposed to be "the time of our lives!" I'm 21, diagnosed with POTS and CFS. It started a year ago when I was just starting to get my career as a professional ballet dancer off the ground. I moved back in with my parents last July. Feel free to e-mail or PM me! I'd love to talk -- I'm still tossing around college thoughts, though I'm not quite well enough for it yet. I'm hoping maybe Spring/Summer 2006?! Angela Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.