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kmichaelson

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Everything posted by kmichaelson

  1. Yes, it's pretty pronounced for me when I'm in a quiet room as well, and there are times when it's pretty loud even in a room with noise, though that's not very often. Do you have other ear problems? I've had sinus problems almost all my life and have the feeling of fluid in my ears, and all of this started with vertigo for me, so I've often thought there's some ear issues going on as well, but my ENT didn't really find anything big on all my tests. I also get a rushing sound in my ears when I first wake up and move in the morning. One doctor told me this is a type of tinnitus as well, though its very different than the ringing/buzzing I have otherwise. Sorry you have this--mine isn't usually loud enough to be too annoying but I know for others it can be an extreme pain!
  2. I'm in the same boat as so many of you. I actually moved to a new city shortly before I got sick, so I didn't have a chance to meet anyone outside of work, and now that I've left my job, I don't really know anyone in the area. I hope I can keep in touch with my friends from work, but as others said, it's so hard when I don't have the energy to be good company, and I'm so unreliable about making plans because I never know how I'm going to feel. I'm lucky to have a husband who's my best friend and I have some family just a couple of hours away at least, but my social life is pretty nonexistent otherwise. Maybe we should all start a book club or something so we have something we can all do socially together from a distance.
  3. Yes! I've been wanting to ask this same question! I've been kind of concerned because even though I've had these problems for about a year, they've gotten a lot worse recently. Anything that involves moving my fingers with any sort of precision has gotten very difficult for me. I asked my cardio dr. if this could be due to dysautonomia and lack of blood flow, and he said he thought it could be. Still, I worry that it's something more to do with my nervous system. I had some nerve tests this past summer, and some of my nerves were "slow" (whatever that means) but the test was inconclusive otherwise (sigh). It would just be nice to know what's going on with my body for once and know what to do to treat it.
  4. Going up hills or steps is just like that for me as well. On good days, I can walk on flat ground pretty easily for a long time, but whenever I go up stairs or any sort of incline, I get really faint, short of breath, tachy, etc. I don't really understand why an incline makes such a difference, but it definitely does for me. I've been trying to exercise more for the last couple of months (slowly building up) and it doesn't seem to have helped with this issue so far, but maybe in time.
  5. The winter weather definitely worsens this in my case. I always have dry eyes and mouth, but everything (skin, nose, etc) is worse in the winter. Have you tried using a humidifier? That's helpful to me, especially at night so that I don't wake up feeling like spent the night in the Sahara.
  6. Can anyone explain what ventricular lactate means? Sorry, this sounds interesting, but I can't figure out the meaning of that!
  7. Good luck with this, Katy! how did your doctor ever know to look at your C4a levels--was it because of Lyme? My sister right now is going through all kinds of Lyme testing and I never realized how difficult it is to determine if someone has this disease or not!
  8. Hi Katy, I have this exact difficulty. It's really hard for me to get my HR above 125 no matter how hard I pedal on the bike. Doing anything standing up, however, my heart rate sky rockets pretty easily, but I get pretty bad joint pain as well so I'd rather do the bike if possible. I just don't know how much good I'm doing myself if I can't get my heart rate up higher than that. It's only been about a month that I've been exercising on it, so maybe this is just temporary.
  9. Thanks, Jangle, for sharing this! (And thanks, Claire, for asking in the first place!) I feel like I finally have a slightly better handle on the different identified mechanisms going on with so many of us. I feel like I have so much to learn about this disease and I'm grateful for all of the knowledgeable people here!
  10. Hi Ruby, my BP is very low like that when I first wake up and I often wake up drenched in sweat as well. You described the difficulty of my mornings of stumbling around perfectly too... I think it's somewhat 'normal' for BP to be lower when we sleep, but I would guess that ours is lower to the point of causing our symptoms. I'd like to get some additional testing done to help me figure out these symptoms a bit better. I'd be very interested in hearing what you find out--good luck following up with your cardiologist!
  11. katy..... i do the EXACT SAME as you are describing!!!!! This is what happens with me too--it happens very very often for me! It's not that I choke on something once I swallow, but that I take a drink and then can't actually swallow. I have to wait anywhere from a few seconds to like 30 seconds for my throat to do what it's supposed to!
  12. This is interesting and gratifying to see so many cases that seem to disprove the idea that we all got this just because we're deconditioned! I know that wasn't the case for me either. I was always very active and played three sports all throughout school and exercised in what off-season I had. As an adult I wouldn't call myself a gym rat, but I've always been a consistent exerciser--either going to the gym for 45 minutes over my lunch, playing tennis, biking, walking, whatever the weather and my schedule allowed. I miss being able to exercise and feel good and healthy from it. Hopefully I can slowly work my way back to it. I miss yoga especially because it seems like that would be gentle enough for me right now, but I'm too dizzy for almost all of the poses.
  13. Thanks for the response, Mary! I've seen Dr. Fouad mentioned in other threads too. Did you just see him when you visited or did you have additional tests done (like immunology or endocrinolgy types of tests)? I guess I'm curious about how POTS is affecting other symptoms or vice versa. How would you compare the Clinic to visiting Dr. Grubb. I'm actually lucky in that I'm very close to both, so I've been debating where I should go first. Sorry for all the questions! Sometimes I just don't know where to start with these things.
  14. Hi everyone, I've been diagnosed with POTS for a few months now and midodrine has helped my symptoms to an extent, but I've been feeling like I'd really like to get more of a handle on what might be the underlying cause of my problems. Plus, I have all kinds of symptoms that don't really seem to be controlled by the midodrine (digestive problems, cold extremities, loss of dexterity, etc.) I guess what I'm hoping for is to get more of an overall picture of what's going on rather than just seeing on particular specialist, but I don't know how to set such a thing up (or if it's possible I guess). For those of you who have gone to the Cleveland Clinic, could you tell me if this is how it works and, if so, how you went about having an overall evaluation? Did you think it was worth the time, money and energy overall?
  15. Congratulations on making it through that process, Tenille! I haven't yet applied for disability, but I can totally relate to the feelings you're describing because I've been feeling like a schmuck trying to get ADA accommodations at my work. My family has always disparaged anyone who needs any sort of social program or assistance, so naturally I feel some shame about needing them myself. But these programs exist for a reason and you're helping everyone else who is in this same situation by continuing to set the precedent that this disease is real and majorly affects our lives! I try to think like Julie suggested: that this is just a temporary situation--it's what I need right now, but not necessarily the rest of my life.
  16. Hi Naomi, Mine is exactly like you described!!!! I'm sorry you have it too, but it's gratifying to know I'm not the only one with this unexplained feeling! I know what you mean about feeling a bit crazy when a doctor tells you there's nothing there, yet you feel something there! It just feels exactly like I have water in my ears. It's worst when I'm lying down on my side because I can feel and hear the liquid moving around in my ear, just like when you have water in your ears after swimming; however, it's kind of a constant feeling of "fullness" in my ears even when I'm not lying down. I've had the same discussions with ENTs as well... my eardrum is apparently fine so there's no explanation they can give me. I've wondered about Meneire's (because I have chronic vertigo too) but my hearing seems okay and my ENTs have never diagnosed it. I've thought about going back and asking more pointedly if they could look at Meneire's but I'm kind of sick of doctors right now. Like you, the inside of my ears feels kind of moist too. Not to be gross, but I don't think it's ear wax because it seems way too watery for that. One doctor told me once that because I've had sinus surgery that perhaps a nerve was affected during this that has given me this sensation ever since, but seeing how many people on this forum have this same issue, I have to think there's some connection to dysautonomia going on. Anyway, I know you're not crazy, Naomi--maybe our ears our just a little crazy.
  17. I'm not sure if this is exactly what you're describing, but I get kind of numb/tingling jolts sometimes where it's kind of similar to that funny bone sensation. When I have this I feel kind of twitchy and my eyes feel jumpy. Is that similar to what you mean? I feel almost like this could be a brief adrenaline surge, but I don't know.
  18. Hi RunningWild, I have these same symptoms everyone is describing as well, but I developed them about 12 years ago and have only had really pronounced POTS symptoms for about 2 1/2 years. (I've probably had mild POTS for about the past 15 years though.) In the past I had a lot of sinus issues, so I'd assumed my ear issues were related to that, but doctors never seemed to find fluid in my ears even though it's felt like I have fluid in there for more than a decade! Anyway, I don't know if it's a POTS-related issue or something pre-existing for me, but I do find it extremely interesting that so many people on this forum have the same symptom.
  19. I'm sorry, jangle. That's so frustrating! I haven't had doctors put it quite so bluntly, but I've certainly had lots of doctors imply that they've run the tests and prescribed the standard meds, so if I'm not getting better, then they don't want to see me anymore. I worked in a field peripheral to technology and I compare this phenomenon to when someone calls in with a tech problem and the help desk can't troubleshoot the issue, then they often assume it's a user error since they don't have documentation of this particular problem! It's like if our disease isn't in a doctor's matrix, then they want to wash their hands of it. I hope you can find the right doctor, because certainly there are caring people out there who have the knowledge and dedication to help; it's just very difficult to find them and often a long discouraging journey on the way there.
  20. Hi all, I've been struggling for the past year or so to try to hang on to my job while dealing with POTS. Unfortunately I've used up my available FMLA, and I haven't been able to get any additional leave granted. It was suggested by my human resources department that I speak to someone about ADA accommodations, so I did that and have requested an extension of my leave of absence. I'm just wondering if anyone has gone this route themselves or knows if this sort of thing is possible? I searched the forum and saw that a lot of people have taken leaves of absence, but I don't know if those were all through FMLA, ADA, or other methods. I'm certainly not trying to 'take advantage' of ADA or ask for something that I'm not entitled to... some days I'm decent and can move around, but most days it would be impossible for me to work. I'd tried doing a part-time schedule as well, but that was too much for me at the time. I've submitted the initial ADA paperwork today, and I'm getting additional forms sent to me today, including some that my doctor will fill out. I'm also worried that my doctor won't understand the extent to which I've been affected and will question my request because I don't "look" sick. The HR person I've spoken with has been very nice, but she can't really tell me at this point if there's fair chance of this going through or not. I guess I'd just like to know if I'm wasting my time with this request or not. Anyway, sorry, I think this is 2/3 of me venting and 1/3 just asking for input from everyone.
  21. Thanks for all the tips, TCP! It's good to know about something that can be done to help this.
  22. It's funny that you bring this up, because this used to be the case for me. My dizziness and fatigue would get much worse during my cycle. However in the last few months, I've noticed that during the first 2-3 days of my cycle, I've felt MUCH better than normal--in fact, on those days I feel almost like a normal person! The bad news is that about midway through my cycle my endometriosis kicks in and I start having extremely severe vomiting and cramps, so then of course I don't feel so great any longer and it takes awhile to recover from that... bleh, that's another story. Anyway, I guess my experience isn't quite like yours, but I DO notice some change of symptoms at this time.
  23. I've had tingling, numbness, weakness, and loss of dexterity in my hands and feet as well with all of this. I had an EMV as well that showed my nerves were "slowed" but it was kind of inconclusive as to why. All of this started before I took Florinef or Midodrine, so it's not medication-related in my case (and I'm no longer on Florinef). I think that much of my problem might be due to a lack of circulation to my extremities because all of this is worse when my hands and feet are extremely cold, and the cold also slows down nerve signals (according to the lady who gave me my EMV). What I don't know is whether this is causing any permanent damage to my nerves, or if it just feels that way. I just dread seeing another doctor and having more tests to find out.
  24. I'm so glad this was posted! First of all, jenglynn, I'm so sorry for everything you've been going through lately! I've followed your posts and I know it's been a horribly difficult time for you. I completely feel grief, anger, and despair over having this stupid, unpredictable, baffling illness! More than anything, I feel isolated because I'm living in a new city where I don't know a lot of people, and now that I'm leaving my job, I don't see the friends that I made at work. It's very depressing for me, but I'm so lucky to have a wonderful husband and (for the most part) a supportive family. That contradiction is my biggest struggle as well! I feel like I'm "giving up" if I accept that I'm sick and stop fighting it, yet at the same time I feel like I'm wasting my energy and fighting a losing battle if I don't just accept my limitations. I've been trying to change my thinking lately to where I accept that there are things I cannot do any longer (or right now at least), but I try to focus on the things that I still CAN do and appreciate those. Of course, those things seem very few and far between sometimes, and it's much easier said than done to change the way I think.
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