TypewriterGirl

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.

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!

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!

We definitely need to make a trying to get knocked up forum here. Or maybe just a club. With shirts.

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!

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.

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.

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?

Here's a link to the episode: http://www.hulu.com/watch/144904/house-the-choice

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!

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.

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.

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?

Yep, I only take a half. Full dose was too much.

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!