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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 getting a liter of IV fluids with potassium once a week. I'm not going to continue those, though, so I'll keep an eye on those levels.
  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 legitimate reason as to why I can't participate in a lot of the activities I've always hated. 3. I've made friends who also have POTS and have similar limitations. It's nice to spend time with people who get it. Have you found a bright side of POTS? Let's be positive.
  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 things done and can't do them, so sick or not, I have to handle things. There was one time she kept asking me to bend and get stuff -- as in, she wouldn't ask me to do it all at once, she'd think of something else and have me bend down again a second or two later -- and I had to ask her to stop having me go up and down. It makes me lightheaded and causes vision blackouts. As far as my vision, I have a lot of visual disturbances, including black spots, bright spots, shadowy things, bubble-type things, snow, etc. When I lose my vision, though, it's usually a blood pressure thing; when I stand up too quickly (or not even too quickly sometimes) from sitting, lying or even bending/kneeling down, my vision goes black until my blood pressure can rise to accommodate the positional change. My pediatrician back in the day couldn't give me an answer, but my eye doctor told me that it's orthostatic hypotension and to sit down when it happens because it could be a precursor to fainting. Interesting that my eye doctor was the first one to notice that something wasn't right with that whole system! I've also lost my vision while standing during a symptomatic episode, such as in a too-hot shower. I lose it during exceptionally bad ventricular tachycardia episodes, too. Sometimes it really hurts my head, neck and shoulders/upper back as it tries to come back -- I'm guessing that's a blood-flow thing.
  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 the second one -- it was a great day. For the third TTT, the doctors raised the temp in the room a bit and had me wear a bunch of layers to really encourage the POTSy numbers -- when I'm hot, my symptoms are bad. It was miserable, but it worked.
  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 stuff from the car to the basement for her. That's a job I would have farmed out to my boyfriend if he were around, but it was just me, and Mom wasn't going to be able to do it. Honestly, it makes me feel good after those marathon days are all over, knowing I can push through high heart rates, shakes, lightheadedness, vision losses, BP swings, etc. It just means that I'm still the one who calls the shots, not POTS. In the end, it's good for me.
  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 debilitating. The ob/gyn said not to go off the pill until I'm ready for kids, but I'm approaching that point and am wondering what's going to happen. She said she doesn't think I ovulate, but that's really just a guess. She said she doesn't think it'll be difficult for me to get pregnant, just that I might need some meds to help my ovaries do their job. I just wish she had a little more information me more than 10 years later.
  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 to see a rheumatologist in this area, I'm going to take it just to get into an office. I had one in my hometown who was able to help me with myofascial issues, and I'd really like to have someone where I am now, especially because my joints are giving me so much trouble lately and my myofascial issues are making a reappearance. It's probably the weather, but I've been in a lot of pain (I'm pretty sure sacroiliac joints are not supposed to move this much) and think a rheumatologist is the right person to see. I figure I can get to a geneticist through the rheumy or on my own; there's one in town. Thank you so much for all the links and names. I have a lot of reading to do!
  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 doctors wouldn't have bothered testing me again. But Dr. Freeman was right, and I'm grateful he didn't just let it go after the first round of tests. I probably said this on another thread, but if you go in and treat your appointment with him like a business meeting, for the purpose of exchanging information and working toward a solution, I think it'll go just fine. I wouldn't cry in his office and tell him how terrible I feel -- that's just not his thing, from what I've gathered -- where I've actually done that with my PCP when I was growing increasingly frustrated during a bad stretch. I'll definitely keep you updated. And, I have to say, I was incredibly impressed that I got a call back so soon from the fellow. I can't even get called back that quickly from some of my local doctors! I'm truly glad to have this team on my case.
  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 looking forward to going back to discuss symptoms and treatment again, but mostly because I just want to learn more about how this all works, even if I'm not sure of the why. I'm less emotional about my health and think the medical and scientific aspects are pretty cool, even when I'm feeling really bad, and I expect that's why things have been going well with the hard-core scientists/researchers. I thought Dr. Freeman was helpful and thorough, and even though he wouldn't diagnosis me with POTS after the first tilt because the numbers weren't there, he still thought I had it and began treating me for it. When the fellow called to see how it was going, he referred to my "probable POTS." There are no clinical diagnoses there because the doctors are true by-the-book scientists, so everything has to be confirmed with testing and numbers, and I think a lot of patients are a little turned off by that kind of culture. I also adore my PCP, who is all about treating the whole patient and being a clinician -- and she's the one who first dx'd me with POTS, so I'm very fortunate to have her.
  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 someone from the office could call me back to discuss the results. One of the doctors got back to me within a couple of hours, which was great. He said the test confirms POTS, but he told me not to worry about the abnormal parasympathetic response because it's not a perfect test and could have been abnormal because of the way the devices were placed. I had all the nerve blood work done at my last appointment, and everything came back fine, so he said not to worry about neuropathy. He told me there is a skin biopsy test I could have done for EDS, and my PCP said she's going to try to get me to a rheumatologist; apparently that's not so easy to do in my area unless you have something already diagnosed or a positive lab. Strange. The secretary said there should be an appointment available in late August or early September to get me in for a follow-up, which the doctor today said would focus on symptoms and treatment. He said he didn't expect more testing because I had all the routine stuff they usually do. I agree with you about dysautonomia being a symptom. I'll go searching for the EDS thread, too. Thanks!
  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 the first round, but I didn't have BP issues this time. I'm OK with that. I do not at all like the sound of autonomic neuropathy, but you're right -- it was listed in the report among the conditions that postural tachycardia can be associated with. My PCP gave me the POTS dx months ago based on my history and a TTT she had me do locally, but the specialists dismissed those numbers because the test wasn't done the way they do theirs. (My PCP sent me to their lab for confirmation.) They had me keeping a BP/HR log for them, but then I got tired of paying too much attention to my numbers, so I stopped. I shouldn't have, I know, but I suppose I should fax them the results I have; almost all of the HR changes from supine to standing are 35-51 bpm after three minutes. I'm OK with getting to the bottom of why I have (probable) POTS, but this place is three hours away, so visits often require me to take a sick day from work. It's mostly the hassle that I'm not looking forward to, but answers would be wonderful. It's been almost a decade since I started this whole adventure, but I thought it ended with just a couple of heart arrhythmias. Guess I was wrong!
  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 variability with deep respiration, tests of cardiac vagal function, were in the abnormal range. This is classified later in the report as a measure of parasympathetic function. Other measures of sympathetic and parasympathetic functions were in normal ranges. - On my tilt, my response "approached criteria for an exaggerated postural tachycardia." I went from 105 to 133 in the first 10 minutes. I was nervous, so my starting HR was quite high; as soon as they put me flat again, I was at 77. -During active stand, there was an exaggerated postural tachycardia. I went from 79 to 119. -My BP was in normal ranges. The report says the study is abnormal, with evidence of an exaggerated postural tachycardia and with the one measure of parasympathetic function out of normal range. So, does this mean POTS? The report said the postural tachy is a nonspecific finding and has been associated with a whole host of conditions -- my guess is the lab sees POTS as secondary to another problem, including things that don't necessarily originate in the ANS. I'm nervous this means even more testing to find out what else is going on. But does having abnormal cardiac vagal function indicate that this is based in my ANS? Does having a radically different first round of testing -- the only abnormal thing was my labile BP -- indicate anything else? Thoughts or impressions on this? Now, the EDS question: The autonomic specialists said they thought I had EDS, but they wanted me to have genetic testing to confirm. My PCP said the testing doesn't exist, so I'm a little lost. I had LASIK four years ago, and my eyes have steadily declined for distance vision. My eye doctor is familiar with dysautonomia and EDS, and before we develop a plan -- do an update LASIK procedure or get glasses to use when necessary -- he wants me to sort out the EDS issue. How do I do this? See a geneticist? Thanks in advance for any insight you can share.
  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 accumulating records and documentations of changes, so maybe I'll have a better idea soon of why that is.
  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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