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Everything posted by autumn

  1. Thanks for the response, Julie. I haven't taken thermotabs, but I do eat/use a lot of salt -- I've always craved it, even as a little kid -- so I don't think I'm using less salt than I was using before the florinef. If anything, I'm using more because I have a doctor's approval to go nuts with my sodium intake. I know I don't drink enough, and I never have. I can't keep fluid in me, and because I work, it's a serious inconvenience to drink much at all, since I lose so much without drinking to begin with. But maybe thermotabs will help with that, too. My potassium has been OK, but I've been get
  2. I'm pulling together all my records for a new cardiologist, and I noticed something about my sodium levels that has me perplexed. Before I started florinef, my sodium levels were always 138. Since I've been on florinef, my sodium is consistently 137, which is the bottom of the normal range. I know one point isn't a huge drop, but since I'm now on a medication that is meant to increase the sodium in my body, I'm confused as to why my levels would drop slightly instead of increase. I'm on .1mg once a day. Does anyone know why this is happening? Am I misunderstanding the purpose of florinef?
  3. I'm supposed to drink five liters of water a day, and I just can't do it. On Thursday, I had two big glasses of water, a small iced coffee and a liter of IV fluid, all spaced out through the day. I woke up seven times that night to urinate. SEVEN. That is not OK. I lost almost five pounds in fluid from Thursday night to Friday morning. As far as I can tell, the only thing increased fluids does for me is send me to the bathroom more often. I'm on Florinef and salt just about everything, too. I'll try putting salt in my water, too. Maybe that'll help some. Thanks for the tip, Flop.
  4. If I'm not getting up for something -- having to be somewhere usually gives me an adrenalin surge that makes me feel awake -- I have a really hard time feeling present in the mornings. I just had a sleep study done because I wake up frequently during the night, either to go to the bathroom or just because I can't stay asleep, and the doctors want to know why. Maybe poor sleep quality is to blame for your groggy mornings. If you haven't had a sleep study yet, it could be worth asking about.
  5. I am so, so happy that so many of us can find a silver lining to this. You're all amazing people.
  6. There are so many threads about how much POTS ****, but since it's not going anywhere, I've tried to find some positives about it. 1. I LOVE salt, and people have always been on my case about how much I use -- "It's going to catch up with your blood pressure one day!" But now I'm supposed to eat up to 10 grams a day (I don't even come close), and it's nice to have a doctor's permission to use as much of it as I want. 2. I am so not an athletic person. I never have been. I would use every excuse under the sun to get out of running in gym classes, playing sports at camp, etc. It's nice to have a
  7. No worries. My diagnosis isn't even a year old, but the symptoms have been around forever -- and when your doctors keep telling you that what you're experiencing is normal, you feel additional pressure to just get through it because you think everyone else must be like this, too. There have been a few times in recent years that I've been visiting my mom and had episodes, but unless they're really, really bad -- as in rendering me fairly nonfunctional -- I just "ignore" them. Mom says she knows it's not all in my head, but I feel like I can't really say when I'm feeling bad because she needs t
  8. Many places call it a negative TTT if you don't pass out. That doesn't mean it's not positive for POTS, though. My first TTT had the saline, but I don't think it was enough to really affect the results -- it's usually an hour or less, not run at a fast pace. They put the line in you just to have something by which they can deliver meds if you need them. I'm guessing your isuprel was delivered via IV? Another thing to consider is that we all have good days, and sometimes a TTT catches us on one of those. You can always repeat it. I've had three TTTs in the last year, with almost no tachy on th
  9. YES! I'm glad you posted this, and I'm glad others do this, too. I just push through because I have to -- I don't have kids yet, but I have a job I love and don't want to lose, and I have other responsibilities that no one else is going to handle if I don't. For example, my mom is disabled, and I make the six-hour round trip every couple of weeks to see her (not just because she's disabled; I enjoy spending time with her!). When I'm there, I'm usually running a bunch of errands for her and doing the heavy lifting -- groceries, laundry, etc. The other day, I had to carry many, many pounds of st
  10. Thanks, Tennille. That gives me hope that the no-period thing doesn't necessarily mean having a difficult time getting pregnant.
  11. I just wanted to add that if you do stop taking the florinef, don't just stop -- I think you're supposed to ween off. Someone else can probably give you advice on how (maybe your pharmacist?), but I know that when I've had to stop florinef suddenly for testing, I was really, really bad. I didn't find out until later that you're supposed to gradually reduce the dose, not just quit taking it.
  12. hilbiligrl, did you get pregnant without having periods? If you did, how did you find out you were pregnant/were you trying? I got my period when I was 13, and I had it three times, on time, but it'd last eight to 10 days and would be horrifically heavy and painful. And then it stopped. My doctors ran batteries of tests for the next 17 months, and when they all came back normal, my ob/gyn decided to induce a period with progesterone, and I've been on birth control ever since. My periods are now super short, thankfully (I'm on a 24-active-pill pack), but the pain is still practically debilitati
  13. That's really interesting. My doctors have thought since I was little that I have some kind of autoimmune condition, but they haven't been able to find any proof. It comes up again from time to time, and I'm going to see an endocrinologist in a couple of weeks; yet another ENT thinks it could be thyroid based, even thought all my labs -- again -- have come back normal. My pediatrician kept looking for things like rheumatoid arthritis because of all my joint pain. Those labs were normal, too.
  14. Wow, that's a lot of info! Thanks, Sugartwin! I'm not sure what type of EDS they think I have, but I expect I most fit Hypermobility or Classical type (they thought my skin was fairly stretchy/gathered easily, but I'm not sure how much skin involvement there really is). At my first follow-up, before POTS was confirmed, they said my "likely EDS" could be causing my "probable POTS." They did mention the vein stretchiness, though. Interesting that there's literature saying that's not a legit connection. They told me to see a geneticist, and I completely agree -- but if "likely EDS" is my ticket t
  15. I honestly don't think he's unfeeling, but he's not going to coddle you or be a soothing voice of assurance. He's going to tell you what he thinks, and he's going to do what he can to treat you, but there's no extra mile of being a sympathetic ear, if that makes sense. He answered all of my questions and didn't brush me off at all -- to the point where he repeated my testing because he understood that people have better days than others and believed me when I said things are usually worse. I've definitely had doctors who were both more full of themselves and less knowledgable, and those doctor
  16. Naomi, I'm seeing Dr. Freeman and his fellow at Beth Israel Deaconess Medical Center in Boston. They're handling all my autonomic testing; my GI, thyroid EDS testing are all being done where I live. (Boston suggested only the EDS testing out of those three.) I've read a lot on here about Dr. Freeman, and while I'm having a great experience with the BIDMC doctors, it does seem I'm in the minority. I've heard he has no bedside manner and doesn't care about how you're feeling, but that's not really why I went there. All I wanted was answers, a confirmation of a diagnosis, which I got today. I'm l
  17. Thanks, Chaos. I'd been through so much cardiac and other testing since I was little that I've been worn out over this many, many times. When my PCP in September told me she thought I had POTS, I thought it'd be one TTT and I'd be done, but I've had three of them since September or October -- in addition to GI tests and thyroid tests, some that I'd done before and some that I haven't. It's just a lot of testing in the last couple of months, and I'd like to be done. My doctor agreed with you that it looked like POTS and autonomic neuropathy, so I called the specialists today and asked if someo
  18. Thanks for answering, Chaos! I definitely fit the clinical/history requirements for the hypermobile EDS. The specialists wanted me to see a geneticist to be sure which kind I might have, if any. Guess it's time to make an appointment with someone. My testing was done in the same lab. The doctors expected that they could get more dramatic numbers out of me than they got during the first round -- because my history so strongly indicates POTS, they thought I was probably just having a good day -- so they repeated all the testing. It sounded like they expected me to faint because of my BP drops on
  19. I have no advice to add, but I just wanted to say that I've been thinking of you and K often the last few days. I hope they have some answers for you soon.
  20. Long story short, I have the report from my latest round of autonomic testing, but neither the specialist who ordered it nor my PCP has called to discuss the results yet. While I'm waiting to hear back from someone, I thought I'd come here. My first testing in the lab was borderline abnormal with no serious tachycardia but with labile BP, including drops of more than 20 points, so the doctors were throwing around the possibility of NCS and/or OI, though they said my history strongly indicates POTS. This round is abnormal, no qualifiers, but I don't know what things mean: - Measures of HR varia
  21. Thanks for all the replies, everyone. All my labs and scans came back fine. My doctor said she doesn't think anything is wrong and wants to just keep watching things. I have an appointment with my ENT about all of this next week, too. The nodule didn't light up on the scan, my doctor said, but the tech told me that my nodule was too small to show up, so I'd still like some additional closure. At the very least, I'm amused that the doctors who have looked at my thyroid usually expect something to be wrong, and then the tests come back normal. I've been in this cycle for years now. But now I'm
  22. I'm OK during the day of the missed dose, but I'm *guaranteed* to have a hard time the next day, even if I take it.
  23. That did help, Sue, thanks. I have a question, though: How did they know it was Hashimoto's if your labs were normalish? Was it the antibodies that showed it? All of my blood work that would indicate Hashimoto's has come back normal in the past, and as far as I can tell, I've never tested even remotely close to hypo. I really don't think I have it.
  24. MomtoGiuliana, the doctor said the same about the labs, so she's testing the antibodies that would indicate Hashimoto's. I also had that test in November, though, and it was normal. My scan today was normal, at 31.5 percent. What a relief. I'm just a *little* worried that it appears something is wrong but that the obvious/nonscary things are being ruled out. I'm expecting my doctor to want to do a biopsy next. Abetterjulie, it can't hurt to ask your doctor to look into it more.
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