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autumn

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Everything posted by autumn

  1. Thanks, everyone. Sue, I always feel a little weird going to a doctor's office because I'm so young and have a laundry list of diagnosed problems and a longer list of symptoms that didn't have an explanation. I was happy my PCP was the one to bring up POTS; I had known about it for years from a friend, but I didn't want to seem like a hypochondriac and mention it to anyone. But now I've got the diagnosis, and I just got a call yesterday from a specialist for a follow-up appointment. My test was only borderline abnormal, but my doctor called and said I had to be seen ASAP (I've had two borderline tilts -- for different reasons -- and a clinical history of POTS symptoms), so I'm on a high-priority list. The doctor is known to be, well, difficult, and I want to be prepared when I go in there without sounding like a know-it-all. I think that's a difficult balance to strike. That said, I think it's worth asking about because I do have some of the symptoms of hyper-POTS and MCAD. It's just ... I'm so used to being told nothing's wrong -- really, they can't find anything wrong -- that I'm still struggling to accept it's not all in my head and that there really IS something.
  2. For me, I know that freaking out is just going to make things worse (drive my heart rate up more) and that a bad day is just another part of the cycle, so I try to just roll with it. If I'm having a particularly bad day, I use it as an excuse to hang out on the couch all day and sleep or watch movies. I also try to remember that it could always be worse, and I try to be thankful that my condition isn't something more serious. It's not exactly easy living with all this, and I feel sometimes like my body is just completely out of my control, but I won't let it take my sanity, too. I have limitations, some days are rougher than others, but POTS doesn't define me or own me any more than I let it. So a bad day is just a bad day, and I hope for a better one tomorrow.
  3. There's a lot mention of hyper-POTS and MCAD on here, and I'm trying to formulate questions for my doctor(s) without sounding like a hypochondriac. (Also, I'm just a generally curious type and like to know about things.) Can someone explain or point me in the direction of info about them? What symptoms would differentiate hyper-POTS from your "average" dysautonomia? What about MCAD?
  4. Kim, I hope Kay starts to see some improvement with the higher dose. I've been reading your threads about her -- I lurk more than I post -- and my heart just breaks for both of you.
  5. Thanks for the response, Rachel! I took some Motrin because I started getting a headache shortly after the second pill (I really think I'm losing my mind sometimes), but I felt OK otherwise. Let's hope I don't have a repeat of this tomorrow. ETA: I just notice the melatonin the morning. That would definitely make for a difficult day!
  6. I accidentally took two .1mg pills today -- thanks, foggy memory. Is that a problem?
  7. There's so much information in here! Thanks! I took the Florinef last night, and I didn't sleep. At all. This is definitely a morning pill. hilbiligrl -- I've never met anyone else who gets a burning feeling with drinking water! It feels like I'm drinking something acidic. I recently switched to gatorade, and that's easier to get down. I'm rarely thirsty, but if I am, it's always toward the end of the day. I do get dehydrated, however, and have often ended up in the ER for fluids when I'm really sick with a virus or something. radiohfan23 -- I don't really know what happens to my BP when I stand. My first tilt was abnormal because of my heart rate, but my second was abnormal because my blood pressure was all over the place. I don't have the numbers from the second tilt though; I haven't even gotten a call from the specialist for a follow-up. I'm still so new to all this, and there are so many variables and variants. MCAD, hyperadrenergic POTS -- it's kind of overwhelming, and I don't understand the differences just yet. I think I'm just so tired of researching and so relieved that I finally have a diagnosis, no matter how broad.
  8. Thanks, TXPOTS. I'll keep that in mind. Hilbiligrl, I was wondering the same thing. My situation isn't as extreme as yours, but I don't like to drink a lot, even though I know I have to. My boyfriend thought I seemed extra dehydrated one night and politely forced me to drink two glasses of water before bed. I had to get up no fewer than six times that night. For as little as I drink, I seem to lose a lot of fluid, especially in the 5 a.m. to 12 p.m. time frame. I was hoping this would help keep things in my system a little longer.
  9. Per advice here, I'm going to give Florinef a whirl before I really commit to IV therapy, at least more than once a week. I just filled the prescription, and I'll probably start tonight. (The pharmacist said it didn't matter what time of day I take it. Do any of you have more success with morning vs. night?) I've read through some old threads on it, and as with anything, the results are a mixed bag. For those of you who are/were on it, what can I expect? I'm a little paranoid about weight gain, but I know that's likely with fluid retention. My doctor said to also watch my heart rates because sometimes the medicine can cause spikes. Is there anything I need to monitor while I'm on it? Any signs I should immediately stop it? The script says to take it once a day, but she said I could take it every other day or as needed if I tolerate that better. It's a .1mg pill. I always get so nervous before starting a new medication. Ugh.
  10. There's been some great info here, and I wanted to add that it IS possible to get a clinical diagnosis based on symptoms, in addition to the borderline tests -- that's how my PCP dx'ed me. I'm fairly sure Dr. Grubb has done that before, too. I hope you can get an appointment soon, and I'm sorry you had such a bad experience.
  11. Another update: I was formally diagnosed with POTS today. My PCP said there's no doubt clinically, taking into account all my symptoms in addition to my two borderline tilts (each tilt showed a different set of issues, from what I can tell; my body's response wasn't the same). She even got to see my really dilated eyes today, which was just icing on the cake, really. I requested and got a script for florinef, though she said she hasn't had good long-term results with it. It might buy me a few months before I have recommit to IV fluids, she said, and we'll increase to twice a week then. She advised me to get a PICC, but I'll probably put it off for as long as possible and opt to get stuck twice a week instead. I asked her about my recent vein issues -- they're hard to find, hard to stick, move around a lot and are just generally "fragile," the nurses said -- and she attributed it to POTS taking a toll there. She said my diagnosis of inappropriate sinus tachycardia probably still stands, that it's not just POTS, but that my ventricular tachycardia is probably autonomic in nature. And there you have it. Within three months, I had a doctor do what many more couldn't do in a decade: figure out what's wrong.
  12. On a good day, my resting is about 85-100. I bounce around from second to second, though, and even talking bumps it up a bit. I was told it's a high resting rate, but I've never known it to be any different. My lowest documented was 68, while I was sleeping, but it always climbs as soon as I wake up.
  13. Firewatcher posted some good information. I'm not sure this is what they have in mind, but as far as the cooked and raw chestnuts go, there's something called oral allergy syndrome in which people who have an allergy to a pollen will have oral allergy symptoms after eating something from that pollen family. Often, if this is case, someone who reacts to the raw item does not react to the cooked item because heat changes the protein structure in the food. I think that's the issue with latex-food allergy, too; the food and latex share similar protein structures.
  14. I didn't even know I was having sinus tachycardia every day until my electrophysiologist pointed it out after he received the report from the heart monitor I wore for a month. (The POTS diagnosis came months later, from another doctor.) If it's just my heart rate that's high, I'm usually oblivious. I know something is up only once I start feeling other symptoms -- warm, weak, shaky, tired, etc. -- but that apparently doesn't happen every time I have sinus tach.
  15. I work in the media, and my shifts have always been in the afternoons and evenings. I've had health problems for as long as I can remember, back to when I was little, so I've had plenty of time to figure out ways to make it through school and then work. My problems have definitely gotten worse over the years, but I'm so thankful I've never had to give up school or work. Right now, I have just enough energy to get through a workday. Because my shifts are later in the day, I can stay in bed fairly late and take my time getting ready, and I'm usually exhausted and in bed shortly after I get home. I'm not terribly productive in my free time right now.
  16. Thank you, Rachel. I'm optimistic about what this all means. Some people don't understand why I'd be happy to have a dysautonomia diagnosis, but I tell them a name doesn't make my health situation any worse. If anything, it finally gives my doctors and me direction. I understand now why I have limitations that others don't have. I don't feel lazy or inadequate anymore, because I know this is something I can't will myself out of. I can stop fighting my body, accept it for what it is, and learn to work with it. I feel so much better about myself.
  17. Thanks for the fast response, Rachel! I'll ask about a shorter infusion, even if it's one shorter and one longer each week. My pump is fairly small, and I have ventured out a bit with the IV in, but the range of motion in my arm or hand is usually limited, which would affect my work, driving, etc. The nurses seem to have trouble finding a good vein on me, and it often takes more than one try. I end up getting the line in my hand or the cubital vein, and my veins are "delicate" enough that I'm instructed not to move too much for fear of infiltration or other problems. The nurse today told me about leaving the line in, but she said it probably wouldn't last on me. If they could get one in my forearm, I'd be set.
  18. An update on Boston: A nurse from my doctor's office called today to say she got the results from BIDMC, and they were borderline/abnormal. I can't even begin to express how relieved I am; I truly thought -- and feared -- they'd say I was fine. I can understand the borderline because I really was having a surprisingly good day when I had the testing, but it's good to know that even on a good day, they can tell things aren't quite right. I know this journey is really just beginning, but I can't help but feel as though I've reached the end of a very long road. I've spent my whole life, especially the last 10 years, having test upon test upon test and stumping doctors when the results came back perfectly normal. They'd tell me they knew something was wrong, but they couldn't find a source and so couldn't help me much. I'm just so thankful I finally have some answers. Now I wait to hear from Boston about an appointment with the doctor.
  19. Thanks for all the information, Rachel. I certainly have a lot to consider. Right now, a nurse comes once a week, and I infuse over six hours during the day, starting whenever the nurse can get there. I don't mind that right now, but if I have to increase the frequency of the infusions, I'll have to choose a more permanent access site. The nurses have told me that if I have a PICC or a port, I can hook myself up and infuse when it's convenient, likely overnight as my doctor's other patients do. I just don't have the time during the day to devote to having a nurse hook me up several times a week. I work afternoons and evenings, and it would really interfere; I've done a decent job of not appearing sick at work, and I really, really, really don't want to have to go in with an IV running. The nurses don't work when my shift is over, usually about midnight, so being able to hook myself up then would be the real perk. I'm not going to rush into anything. My doctor called me today to say she got a fax from Boston saying my autonomic test results were borderline/abnormal, and from what I understood when I was at the lab, if my tests come back showing anything weird, I'll get in for an appointment much sooner than if they were normal. I want to hear what that doctor has to say before I jump into anything major. I'll probably keep with the weekly infusions for now because they really seem to help. Ideally, I'd have them at least twice a week -- I crash two or three days after the infusion -- but I don't know that my schedule will allow that right now.
  20. Sarah, I'm newly diagnosed and haven't tried meds yet, other than verapamil to control my ventricular tachycardia. My doctor has three other patients with POTS, and they all do really well on IV fluids, so that's what my doctor wanted to try first. Frankly, I'm tired of medicine -- I'm on so much already -- and if I can get results with something else, I want to try it. Her other patients are on daily fluids and have permanent access to a vein, so they hook themselves up and infuse overnight. Because I have to have a nurse start a line on me each time right now, I infuse during the day. One liter is run over six hours. I've had hydration therapy only once, but it really did make a difference, especially in my fatigue level. Fatigue and sinus tachycardia are hands down my worst problems. I think if you do a search for IV fluids on here, there are some threads that'll pop up. It seems people have had good results with the treatment.
  21. My doctor started me on IV fluids last week, with a frequency of once a week for a month or so, and then we'll reassess. I had an infusion last week, and it really helped ... for about 48 hours. I crashed pretty hard after that, and the days have pretty much sucked since then. I get another infusion tomorrow morning, and if it makes a big difference again, I'm going to have to consider increasing the infusion frequencies. My doctor wanted me to get a PICC right away, but I thought it seemed silly because I'd be getting fluids only once a week. I know that if we increase even to every two or three days, I'll need something more permanent. A PICC line scares me, but the home care nurse last week mentioned a port. I can't say I'm thrilled with either option, but the port seems less invasive in day-to-day life. Does anyone here get IV fluids? Have a port or a PICC? I feel like there are such big decisions to be made, and I don't feel adequately educated. However, if I'm going to do this, it'd be best to handle it before the end of the year because of insurance issues.
  22. I don't have a whole lot of information because I'm still new to all this. My primary care doctor just diagnosed me with POTS, and my electrophysiologist earlier this year diagnosed me with IST. I also have ventricular tachycardia; they caught it on a monitor a couple of times now. I don't know yet whether they're all related or whether they'll all even stick after we sort out my health, but I just wanted to let you know you're not alone. -Autumn
  23. An update: My doctor doesn't want to wait till we hear from the doctors in Boston, so I start IV fluid therapy today. If I feel significantly better, that could be an indicator, I suppose.
  24. Lieze, you're so sweet. Thank you. I'm 24 and have been dealing with this stuff practically for as long as I can remember. It was a shock to hear it's not normal, and every time I learn of something my body does that someone else's doesn't, it's so weird. This has always been how I operate. Now it's just a matter of finding out what's behind it and why. Caterpilly, that's about how it went with my doctor. I was borderline without the nitro on my first TTT -- starting rate of 93 (though 80-85 was more accurate; they had me hooked up to the monitor and waiting for 15 minutes, and my heart rate stayed there. When the nurse practitioner came in, they started messing with me and strapping me in, so I jumped a bit, and then they didn't wait for me to level out before they tilted me) and 120/121 after 5 and 10 minutes. Once I got the nitro, I jumped to 151. My PCP used that tilt and all my symptoms to give me the dx, and she ordered IV fluid treatment. I haven't started yet, though. The home care group was going to set me up more than a week ago, but I haven't heard back. I also called the doctor to ask whether we should wait till I hear from the specialists (who seem to have a pretty mixed reputation, from what I can tell on this board), but I haven't heard back on that end, either. I'd like to avoid meds if I can; I'm already on so much.
  25. Thanks, Lieze. It wouldn't shock me if another doctor said everything was normal; that's usually how this goes for me. I mean v-tach certainly isn't normal, but doctors will brush it off if they can't figure it out. I was really active earlier this year, going to the gym every day, doing longer cardio workouts, even upright. But then I got really sick in April with asthmatic bronchitis, and it totally depleted me. When I tried going back to the gym, my heart rate would get too high too fast, my vision would start to go black, I'd start skipping heartbeats, and I'd have to stop. My energy has been gone pretty much since that illness. It's pretty frustrating. The things our pupils can do always amuse me. Before my PCP diagnosed me with POTS, she asked whether people have ever asked if I'm on drugs because they see my pupils randomly dilate. I was so surprised she knew! I had asked all my doctors over the last year what medicine could cause that, and no one had an answer. Duh: It's probably my autonomic nervous system! It really freaked out one man I worked with, and I remember him pulling me aside and dropping his voice to ask if I was on anything because of how wide they were, even in the light.
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