Jump to content


  • Posts

  • Joined

  • Last visited

Profile Information

  • Gender
  • Interests
    Psychology, music, writing, parrots (especially my baby boy, a Maxi-Pionus).

addie13's Achievements


Newbie (1/14)



  1. wrtierlymom, Thank you so much for the reply! I appreciate it! I have checked with them, but unfortunately they weren't able to help very well. I'm trying to find other resources but we just don't have a lot of money to spend on doctors right now. It's really unfortunate. ): lemon, I have never been to WA so it was someone else! I do want to move there, though! Haha. (: I hope whoever it was is okay.
  2. Thank you, Raisin! I really appreciate it. (: And wow, I wonder if my pancreatitis was linked to all of this too. I mean, we figured it was probably tied to my Celiac but I'm not sure. I really hope you get some answers soon! By the way, I don't know if you know this, but Celiac can produce false negatives. A long time ago I was tested and I had a false negative too. It wasn't until it got REALLY bad that it finally tested positively. Thank you, Katy!!!! Those look really interesting! I'll read through those when I have more time as my aunt's on her way over.
  3. Thanks, Christy, for that information! I appreciate it. (: I'd have to see if he's covered in our insurance plan and if I could even have a way of getting there. I'm not that close to Milwaukee so I'm unsure how it'd work. Hopefully I'll find something that will fall into place soon enough! And thank you, Sarah! I actually have looked on that part of the website but nothing comes up for my area. As for the headaches, we cannot afford an MRI/CT of the head nor will my parents let me get one. My doctor's haven't said I need one either but I really wish I could get one because I think it'd put my mind at ease to do so. I'm envious of my sisters who actually got PAID to take one. I wouldn't necessarily call them migraines, though. It's a constant ache that I have but it only gets worse upon standing. Some days, though, it would equate to a migraine but I thought migraines were all-encompassing of the entire head? When I get them, it's always one side or the other with extreme pain. I don't really have any trigger signs, though, other than sometimes feeling out of it and dizzy before it gets bad. Thank you for all the information! I really appreciate the help. (:
  4. I didn't want to make two separate threads, so I figured I'd ask both my questions in here. Haha. First, the doctor question: I live in Wisconsin and am having one heck of a time finding a doctor who could help me with POTS. I need someone who can fit in my insurance plan. Does anyone live here and know of someone? I live near the Madison area. Thank you! As for the symptomatic question: I always have a constant headache, but my question is if anyone who has this gets them on one side all the time. I always get headaches on my right side but being paranoid, I'm always worried it's something that's not related to my POTS. So I'd love to hear if anyone else experiences this so I may get some peace of mind. Thank you!
  5. You know you have POTS when.... :: - You have to carry around a giant purse filled with emergency items and have a spritzer handheld fan hooked onto it - You use the way your hands turn red then back to normal depending on their position as a parlor trick to entertain friends - You tell people your diagnosis and they make jokes about having something called "PANS" because they don't know if you're serious or not
  6. I'm 21 years old and currently in college for Social Work. When I was diagnosed with pots in 2014 I didn't think I'd ever be able to go back to college nor would I be able to do any kind of career with it. One day I randomly decided that I didn't want to do all classes online (as I was considering doing this and just getting an easier degree from one of the online colleges). So, I applied to transfer to another university that wasn't just a two year. I got in and it kickstarted an entirely different path than I'd ever thought possible for me. I'm currently working part time at my school's alumni center and I do front desk work. I sit down the entire time and only get up occasionally. It literally just fell into place for me, as I had walked in inquiring about another job but she offered me a position there. I also do some classes online and some classes in person so that if I'm having a particularly bad POTS day, I can work on my online classes if I cannot make it into my actual class. I also have the disability center helping me out as well as DVR services. I would HIGHLY recommend trying for DVR (or whatever it may be called in your state. Mine is Department for Vocational Rehabilitation) too, as they'll help pay for school as well as help put you in touch with careers you can do with any limitations you may be experiencing in that point of time. I am well on my way to being able to have a career in my field of choice and also know that I have resources who can help me. I'm doing really well so far and pulling A's and B's in my classes right now. (: So, to make a long story short, it is entirely possible. It may take a little while to find the right combination but it will fall into place.
  7. I will try starting a thread like that, as I looked for my state on that part of the site a little while ago and couldn't find anyone. ): Thank you so much for the suggestion and help! I really appreciate it!
  8. gjensen, I'm taking salt tablets right now and that's about the extent. They tried me on some of the blood pressure medications but they made me really, really sick. I'm waiting to talk to my psychiatrist, though, about going onto an SSRI but we're concerned that will be bad for me given my current mental health diagnoses. Katybug, Thank you so much for your input! I really appreciate it and I never knew there was a lot of overlap between the two. I'm not familiar with it and anytime I try to look it up, I can never find anything on the subject. As for who diagnosed me, it was a doctor at a hospital. My diagnosis journey was utterly awful, as I've found many people have experienced. I'll try to keep it short, but I passed out while driving and we saw my PCP. She ran a total of two tests (one was to check for blood clotting and the other was to measure my adrenaline) and then told me it was anxiety. I insisted it wasn't because I've been seen by a psych since I was four and she said she wouldn't continue looking until I talked to him. My psych told me I sounded like I had POTS and we tested it in-office as best as we could. He sent me back to my PCP who referred me to a cardiologist who insisted I just needed to "exercise" more and strongly insisted I couldn't possibly have POTS. I demanded he check the symptoms and he had the nurse do it. He came in and said I was displaying the symptoms of it then prescribed me salt pills. HOWEVER, he called me afterwards and said he wasn't comfortable having me take the salt tablets without enough "evidence" to support something was wrong. Then he wouldn't renew my doctor's notes to excuse me from work. My psychiatrist suggested I visit our state's Faint and Fall clinic (which is a unique clinic. They only see you for initial treatment and diagnosis then pass you back to your PCP) and we were prepared for a full day of testing but within the first hour of being there they did the orthostatics and the doctor came in, diagnosing me on the spot. He said we could do the tilt table test but it'd really only be a confirmation and we didn't want to have to pay the extra money for that. So, long story short, I unfortunately cannot see them again and I need to find a doctor who can work with me on my current medical problems. ):
  9. Hello all! First let me introduce myself as I'm new here~ You can call me Addie and I'm 21 years old. I was diagnosed with POTS in April of 2014 after passing out while driving. Thankfully I was at a stop light! But it started a whirlwind of upsetting events and I had to quit my job because of it. Things are finally starting to look up, however, and I'm back in college with another job that requires me to sit the entire time. I have a question, though! I have a doctor who doesn't know what POTS is nor did they even know what Celiac was (I'm also diagnosed Celiac). She tried to tell me that Celiac, Gluten Sensitivity and Allergy were one and the same. I was a fool for believing her and am very glad I learned differently! She doesn't know what POTS is either, and unfortunately many don't but she's proven to not be the best help for me. I've had a lot of problems with this doctor's office but I can't afford to go anywhere else because this is only where my insurance covers. How could I go about finding a doctor that knows about POTS or is at least willing to learn about it to work with me on it? Also, does anyone know if or think POTS could be linked to Celiac Disease? I had a bout of Pancreatitis when I was 19 (so November 2013) and then it was in January of 2014 that I had my first real episode of POTS. I feel like I always had it, though, to a small degree and that the Pancreatitis pushed me over the edge. I just figured it wouldn't hurt to ask your opinions and advice! Thank you and I'm happy to be able to find a forum that can sympathize! - Addie
  • Create New...