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Everything posted by TypewriterGirl

  1. I don't want to write this as a success story because every time I write it I jinx myself and have a flare. I was sick and undiagnosed with POTS for years. No one ever knew what to do about it and I thought I was crazy. Last September I had a flu vaccine and from then on went on an awful spiral where I was in the hospital at least once a week for IV fluids, unable to work or drive. I had to stay with my parents for a while since my husband was studying for the bar exam and couldn't take care of me. I couldn't drive, I couldn't walk to the mailbox, and it was awful. I gradually started taking small walks, then longer walks. I became militant about my medication, and I also tried to stop worrying as much, going on these boards. Thinking about having POTS all the time just made me more anxious. In the past few months I've moved states. I've been able to go out to dinner with friends (no drinking). I can walk my dog. My life is so much slower than it used to be, but I'm so grateful for every day and every step. I hope I'll always feel at least this good, and I definitely still have bad days/weeks, but in comparison to how ill I was last year it's amazing. I hope all of you can find some relief in your symptoms.
  2. Thank you! It's so crazy that a few months ago I was completely housebound and couldn't drive and now I'm looking to accept an amazing position. I know at some point I will have to have accommodations, but didn't want to ruin my chances while at the same time being honest with my employer. Thanks again for the help!
  3. I'm not sure the best way to do this (or at all). I've moved states and just got a call today that I'm pretty assured I'll get a job I interviewed for. My last job I was out of the office for 4 months while sick and working from home. Though I've been doing so much better lately, I do have days where I'm out of commission, and I've been telecommuting and working from home so all is well. My question is, do you disclose having POTS and mentioning you may need to occasionally work from home as needed, or wait to get hired and then talk to them about accommodations? The job is 100% locked up yet, so I'm not sure of the best etiquette, or if it needs to be mentioned. Thanks!
  4. We definitely need to make a trying to get knocked up forum here. Or maybe just a club. With shirts.
  5. Hi Tearose - I'm using Midodrine for BP issues. I'm actually trying to get pregnant, but going off of Midodrine completely has started me down a Pothole. My doctor is writing me a prescription for compression hose - I'll have to see if the store near me carried that brand. Thanks!
  6. I'm struggling to go off of Midodrine and my doctor wants me to try compression stockings. I get hot really easily and am a bit scaredy to go with the waist-high hose, so wanted to see what everyone else uses and if it helps.
  7. I also have a small PFO that my cardiologist said is too small to fix and have said that it probably doesn't affect my POTS, but may be causing my migraines.
  8. Does anyone have any experience with this? Did you get compression stocking to compensate for the lack of Midodrine? And can you keep up your salt intake? I'm worried about going off of Florinef and Midodrine, and contemplating staying on a small dose of Zoloft. I've also had one doctor advise to be off of medication for 3 months before trying, another said to only be off for a month. Any thoughts?
  9. Here's a link to the episode: http://www.hulu.com/watch/144904/house-the-choice
  10. I ended up getting the Skechers and am loving them so far. Definitely took some getting used to, but I'm feeling my calves working. I never thought I'd be able to wear high heels again - I was diagnosed with Meniere's and have lots of balance issues, but have actually been getting around pretty well and have been able to stand a lot longer than before. Thanks for all the suggestions!
  11. Has anyone else tried these, Shape Ups, or Easy Tones? I've found that wearing heels has helped, and was wondering if any of these shoes will have a similar effect.
  12. Yes! I've definitely gone into the doctor, as they get very large and eventually bruise badly. Mosquitos are the worst. My doctor said he'd never seen a reaction like it.
  13. Just got the results from my Arginine Vasopressin Hormone test - My test results came back as a .6 on a scale of 0.0-4.7. Doesn't this seem a bit on the low side? I can't find anything to see what "low" is. I just had a whole slew of labs done and I'm on the lower side of almost everything, but not low enough to warrant any response one way or another. Anyone else? Bueller?
  14. Yep, I only take a half. Full dose was too much.
  15. I've been on Midodrine for over a month now and besides the head tingling and goosebumps have no problems to report - was very scared to take it at first!
  16. Dr. Ahern in San Diego is a great cardiologist who has a lot of POTS patients.
  17. During my TTT my laying HR was 75 and went over 200. My BP dropped from 120/84 to 50/32 and dropping. I haven't done a laying to standing test because I started Midodrine and I've just been testing my numbers an hour after I take it. I should definitely test it before I take it and after it wears off. Thanks for the suggestion!
  18. This was really helpful - thank you. I felt like I was taking crazy pills.
  19. From the past few days: Feb 15, 2010, 8:05 PM, 113/84 mmHg, 122 bpm, stress level: 2, notes: Standing Feb 15, 2010, 8:02 PM, 112/69 mmHg, 84 bpm, stress level: 2, notes: Sitting Feb 15, 2010, 3:03 PM, 140/89 mmHg, 89 bpm, stress level: 1, notes: Standing, 2nd midodrine Feb 15, 2010, 3:01 PM, 120/81 mmHg, 75 bpm, stress level: 1, notes: Sitting Feb 15, 2010, 10:13 AM, 111/79 mmHg, 107 bpm, stress level: 1, notes: Standing Feb 15, 2010, 10:12 AM, 115/80 mmHg, 82 bpm, stress level: 1, notes: Sitting midodrine Feb 14, 2010, 10:13 AM, 118/85 mmHg, 102 bpm, stress level: 1, notes: Standing Feb 14, 2010, 10:11 AM, 128/86 mmHg, 87 bpm, stress level: 1, notes: Sitting, midodrine Feb 13, 2010, 4:01 PM, 128/80 mmHg, 83 bpm, stress level: 1, notes: Standing, 2nd midodrine Feb 13, 2010, 4:00 PM, 112/80 mmHg, 73 bpm, stress level: 1, notes: Sitting Feb 13, 2010, 10:11 AM, 118/78 mmHg, 130 bpm, stress level: 1, notes: Standing, HR 133 Feb 13, 2010, 10:10 AM, 120/74 mmHg, 104 bpm, stress level: 1, notes: Sitting, midodrine
  20. I've been logging my BP and HR for the past month to send my doctor since he's been playing with my meds. Today I asked him what the next step was and he replied, " Your blood pressure and heart rate are all better?". I'm no longer getting error messages when I take my standing blood pressure but still tired within an hour of being out of the house, haven't been able to go into work in a month and a half, and am still always thirsty. Is this just my new normal?
  21. There's definitely other SSRI's out there that you should try - they all work differently on different people. I'm on my 3rd week of Setraline and it's just now lowering my heart rate. Sometimes they take a while to work, and it beats the heck out of having a bad reaction. I'd vote to stick it out and if after a month if doesn't work to try a different SSRI.
  22. What time is your gyno appt? Do you have time to show up at your rheumatologist's office tomorrow beforehand to try to get the results? Otherwise I'd try to reschedule with gyno if possible. Good luck!
  23. Flop - Thanks for the response - Hope you're feeling better! I'm 26, 5'6 and 130 pounds so I'm pretty sure my BP rising is somehow due to the Midodrine since nothing else has changed in my medication regime except starting back on it. Just weird for my BP to rise when I'm so used to it falling when I'm standing. Hope you break out of the hospital soon!
  24. Hi Flop, I know this is an old topic, but were you ever able to have this resolved or find out the reason for it?
  25. I'm only taking 5 mg twice a day - once at 8:30 a.m. and once at 1:30 p.m. Today I tested my blood pressure and it was 123/79 sitting and 129/90 standing. I contacted my doctor to see if this is something I need to watch, since Florinef also raises my blood pressure (I take .05 daily). Thanks for all of your words of wisdom - hopefully I'll get this figured out.
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