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Millerla

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About Millerla

  • Rank
    Advanced Member
  • Birthday 09/14/1996

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  • Gender
    Female
  • Interests
    Dance, speech, theatre

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  1. In my experience, Mayo doesn't do a lot with results. They did all sorts of tests for me when I went, and at the end of the week, said "well, your tilt test was positive." Then told me a couple ways to manage my POTS, and sent me on my way. No further testing on that was done. But, that was my experience. I was at the one in Rochester. I think we all have brain fog, some days worse than others. It's actually the reason I had to quite taking PSEO(college classes in highschool), even though I loved it because of the flexible times, I was just staring at the teacher not able to comprehend what they were saying at times. It's just all a part of the crazy world dysautonomia has us in. It is a bit odd that they did so much testing on the brain fog in particular.. Unless that was what you got referred for. I wouldn't worry too much about it for now though, just take care of yourself.
  2. Thanks! I've always wondered why they had me do that during my TTT at Mayo... Now I know! I guess my body responded correctly, just a little overactive, because the woman doing the test said "My your days must suck." while watching my hr.
  3. I was actually told that bloating is a good thing. As long as you're drinking plenty of fluids along with the salt, your body should be retaining that water and salt and upping your blood volume, helping with POTS. That's why many are told to go on a high sodium diet. I have no idea if this means that you're getting back to "normal" though.
  4. Sorry if anybody already explained this, but I'm too exhausted to read through everybody's comments. A big reason is actually because heat causes your blood vessels to relax, which makes blood pooling even worse. I was told to not wear too many layers, especially on my legs, because then I'd warm them up and let our already weak blood vessels relax more. But for me, cold is actually sometimes worse. I'm more dizzy in the heat, but more nauseous and weak in the cold. I think our systems are just really wacked out and any changes wack us out further.
  5. I agree, I like the article. I, like many, was a busy busy person before my symptoms really came full force. However, I had the extreme exhaustion quite a lot before I got stressed. In fact, I was in the most low-stress, boring part of my life. I was even on a vacation in Florida the first time I really noticed the exhaustion. It's possible that that was from something else, but that was the defining point for me(It was shortly after a bad bout of the stomach Flu), so maybe stress just exacerbated my symptoms? The only other possible beginning point was after I had mono a little over a year and a half ago and WAS during plenty of stress(I was really busy and my parents were going through a not-so-pretty divorce). When I first noticed the extreme exhaustion(I was never awake for more than an hour at a time), it was after the flu, on a Florida vacation, during a year that I was doing nothing but about half an hour of online school(I left my previous school because of bullying issues) and dance 1 1/2 hours once a week. So if it was the instance after the mono that triggered my POTS, I still want to know why I was so tired all the time for over a year before that. I actually have a slightly high cholesterol, but apparently that's because I lost a bunch of weight then gained it back pretty quickly. I'm also not on any medications for my POTS, technically. I am on a low dose of an anxiety medication and some omeprazole for my stomach. I was told that exercise would be my best friend (easy for the doctors to say..). Oh, and apparently my cortisol levels are good. I had that tested at mayo and the two different autonomic specialists I saw said that they were just fine. I do have very high estrogen levels. The gyno was concerned it would be low, but found the opposite to be true. In the article though, it does say that naps should not be frowned upon. My doctors seem to think that the naps aren't letting me rest as deeply as I should be, and I have therefore been forbidden to take naps. It has not gone well so far, because I usually fall asleep everytime I lay down. I think I sleep plenty deeply though, thank you. I have my alarm set on full volume, so that my mom on a different level and opposite side of the house wakes up from it, but I still sleep through the alarm blaring right next to my head. :/
  6. Eating doesn't necessarily make me more or less dizzy, it just makes me nauseous and crampy as heck. I finally pinpointed one issue to be lactose, but I've been having trouble cutting it out, cuz I like ice cream. The more I've cut it out though, if I do eat it, I get diarrhea all day. Anywho, if I don't eat, I just pass out. (This usually happens pretty quickly. I ate a light lunch one day, just some cookies and chex mix and gatorade, and by 5:00 PM I was in the Mall of America clinging on to my mom) But if I do eat, I feel horrible shortly after. I also do badly with lettuce, I thought it was all in my head, because I feel like lettuce should be a "light" food, but I've heard others saying the same thing. Interestingly enough, most people have problems with carbs, that is about the only thing I can eat. Most of my meals lately have consisted of peanut butter or noodles.(Sometimes with sauce, but that's usually too much for me, so usually with a little bit of dairy-free butter) I was in the car with my Grandma after breakfast one morning, and I was curled up in the back seat moaning, she thought I had menstrual cramps. It probably doesn't help that I've always had issues with getting gas/bowel movements out, so they like to sit and make me miserable. (Yay!) But I do get even more so exhausted and, now that I think about it, headache-y. But this was the biggest symptom for a while, because I was already thin to begin with, and I lost about 25 lbs. People just kept telling me that they were going to have me over and feed me a bunch of food. It does not work like that people.
  7. I agree that POTS seems to be caused by many different things. After all my lab work, because my doctor figured I was low on vitamin D, most of my vitamin levels are fine. Including my cortisol. My issue is that I have very little iron stores, I'm not anemic, but any longer before I started taking my iron supplements and I would be. I haven't noticed great POTS improvement yet, but I do definitely have a little more color in my face. So, unless there is something on the vitamin D issue that I was not tested for, I am absolutely fine on that front.
  8. Oy, this, and the doctor telling me to not take naps have been the hardest things for me to do. It also usually makes me feel a lot worse, which, I'm sure will change eventually, but it's hard to do something that makes you sick(Exactly why I have troubles eating enough). My mom is overweight though, so this has been good for the both of us. I haven't been very consistent with it quite yet, but I'm working on it.
  9. During my TTT, my blood pressure was all over the place. My hr stayed at about 56 bpm higher than my resting hr(which, during the test, was already higher than normal) but my blood pressure went all over. It never got low enough or high enough for me to pass out. But I was sort of graying out at the beginning of the test. Usually it would bounce around from 80/40 to 135/100 I do drink a lot of water and eat a lot of salt, but no water retention pills. (I'm supposed to drink 2-4 liters ((closer to 4 L because I also take iron pills and Miralax)) of non-caffeinated liquid a day, and as much salt as I can tolerate.)
  10. After a couple of the tests at Mayo, I had to have a wheelchair because I was too weak. I definitely felt like a faker, but I knew I needed it. Do what you need to do for your body. Our county fair was last week, and totally not fun. I was out of breath and had a horrible migraine and palpitations. I didn't go on any rides, just judged horses, entered into a floral design contest, and walked around a bit. Mostly I sat at a picnic table though with my head laying on my arms because I felt so sucky, I kind of wish I had a wheelchair. So, yeah, a wheelchair would probably help you, even if you feel weird doing it. I also understand the family thing, even after talking to the doctors, my family all still thinks that it's an anxiety thing and that if I were to use something like a wheelchair, that I'd just be lazy.
  11. I tried to be creative with telling people on fb how I'm sick. When I got my dx, I posted "hey, I just met you, and this is crazy, but I have POTS, so catch me maybe?" Then I added a youtube video about it, but most people didn't get it. One asked if there was a disease called kettle too.
  12. I'm not anemic, my iron stores are basically non-existant because I eat no red meat or dark greens and have heavy cycles. I am taking an iron supplement, no noticeable difference with that yet though. Also, I've had every possible test for celiac/gluten allergies and I am apparently just fine with gluten. I've been well tested for most things except for anything to do with dysautonomia.
  13. I mostly have issues with getting the waste out, though I do get in trouble if I eat late at night. Dairy actually gives me not delayed gastric emptying, but speeded up emptying, lol. The worst constipation I've ever had was when I hardly had a bowel movement for two weeks, then a month without anything, then another month with very little. After taking miralax twice a day every day, and taking 4 childrens' laxatives for a month, then finally two enemas(the doctor told me to, because she felt a big block of poo in my stomach and the xray showed the same. No wonder I wasn't eating and losing weight!)my body slowly got rid of it naturally and I gained some weight. Even now, I'm lucky if I'm able to have a bowel movement once a week. It usually happens worse when I don't eat as well as I should, like eating processed, sugary foods. Oh, and meat. That likes to sit there.
  14. So, I went through a week of random testing at Mayo to be told, at the end of the week, that my "tilt test was positive, so I have POTS". Which is amazing, because I finally have a diagnosis and ways to deal with it. My issue is that they didn't really test for anything else. Some random blood tests for vitamin/mineral deficincies, a diabetes test, and a check on my hemoglobin. All were normal but my cholesterol(a tad bit high) and my iron stores (very, very low. The number was like a 2 point something). My first consultation with an autonomic specialist, the doctor asked me about my flexibility and had me extend my arm, to which she said "hmmm, your arm does hyperextend a tiny bit..." and nothing about that or possibilities of EDS were ever talked about again. I'm going back in January to the PRC, unless I figure it all out myself before then. Should I request another appointment? Should I find somewhere else? I live in Minnesota, about 3 1/2 hours away from Rochester. Also, I only ever saw the pediatric autonomic specialists.(dr. Kornobel and Dr. Kizilbash) would getting into the actual autonomic department help?
  15. I was there foter a week, more for a comprehensive testing before giving me a solid diagnosis though. Although, with all of the things associated with POTS, I'm sure they could test us forever. Its possible that you would be done earlier than a week, but not likely. When I went, I felt like some doctors understood me, and others didn't. The GI guy was pretty weird and not terribly helpful, but managed to pinpoint my lactose intolerance without any tests. The autonomic specialists definitely got me the best. I probably dislikme the exercise test people, but apparently they're used to that XD. My favorite was the TTT person. I was only tilted up for 10 minutes, like the other person said, but I was begging to be let down by then. They did all sorts of breathing things while I was laying down though. Other things I had included a pulmonary test, sweat test(back to my old days of cystic fibrosis testing...), exercise stress test, GI visit, Gyno visit, psychologist visit, x-rays, EKG, blood tests(and other bodily fluids ), a visit to the psychiatrist at the PRC, and several visits with autonomic specialists/nurses. Edit: I went to the Rochester location, and stayed at a cheap hotel with a discounted rate from Ronald Mcdonald house. The main specialists were Dr. Kornobel(sp?) And Dr. Kizilbash. I liked Dr. Kornobel better, but she was out of town the end of the week with Dr. Fischer. I spent most of my time in the pediatrics unit. But that's more because of my insurance company. Of course, assuming you already have a diagnosis, you may have completely different appointments. In my opinion, it was totally and completely worth it, though stressful and exhausting.
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