Jump to content


  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Ravenau1

  • Rank

Profile Information

  • Gender
  • Location
    Perth, Western Australia

Recent Profile Visitors

1,766 profile views
  1. Thanks for your replies! Lifesaver, very interesting that it was your left nipple too! I presumed that it was because of the ring in that one, but perhaps not. Though mine aren't any different than usual visibly. I hadn't been able to find nipple pain/soreness as a listed side effect anywhere but it was just too much to be a coincidence. Nice to know I'm not going crazy lol. Simmy, I guess the blood flow to the male nipple is different than the female? Ours are a bit more complicated with the milk ducts and such, though I have no doubt that the hardness and discomfort you experienced is
  2. We had a pretty brutal summer this year so I am looking at one of these for next summer. Certainly seem like they would help
  3. Ok, so I started on Midodrine a little while ago and at first was just getting the crawly/tinglies. Annoying, but no big problem really. Then I start to have some nipple 'issues'. Now I'm pretty sure we're all adults here so I can talk about this without freaking anyone out I have some... 'hardware' in my left nipple, in the form of a silver ring, had it for years and years. So my nipples were a bit uncomfortably sensitive for a few days then wham! My left one really starts to hurt. Hurt ALL day, and at night even the sheet brushing over me would wake me up, if I happened to roll over
  4. Hi all Well after being on Florinef now for a while and that working well I started midodrine yesterday. At this stage 5mg twice a day. I haven't had any major problems with it but I am getting the awful crawly/tingly/goosebumpy/itchy/tickly feeling all over my body within about 20mins of taking each dose. It's definitely worse on my scalp but I even have it on the bottoms of my feet! Does anyone know of anything I can do to lessen it a bit? I mean it's not horrific or anything but it's pretty weird and uncomfortable. I keep twitching, scratching and rubbing and I am sure I look weird
  5. I personally haven't driven at all since my first faint. It's probably been the hardest thing about all this for me, just not being able to jump in the car and go wherever I want. Even now while I don't faint or have dizzy spells with the frequency that I did before I am still not comfortable driving. I can't imagine how I would live with myself if I passed out behind the wheel and hurt someone. My husband now drives the lovley new car we bought for me only 6 months or so before all this started lol, oh well, at least he enjoys it!
  6. I've been on Florinef since the beginning of the year and it has made a huge difference. It's cut the fainting down by about 90%. I'm on a fairly high dose now and I have noticed that it's made me a bit 'puffier' but with how much better it's made me feel I'm not really that worried about it. I've put on a heap of weight since the whole pots thing started so at this point a little more hardly seems noticeable lol. I haven't noticed that I pick up more infections/illnesses on it, but I have to say that since I had chemo and radio years ago I pick up pretty much everything that I come in con
  7. This is an interesting topic! I think a lot of how you feel has to do with the attitude of your partner. I have had serious/chronic illness with two different Husbands (I'm starting to wonder if my body is allergic to marriage! ) I got married the first time at 21 to a guy I had been with since I was 14. I fell ill with cancer pretty soon into the marriage, with a relapse a couple of years later. I worked part time through the whole thing. My Husband was NOT supportive. He wouldn't take time off work to take me to the hospital (and that's wouldn't, not couldn't), he would constantly com
  8. Hi Suzie I am in Australia too, in Perth though. My advice regarding Dr's is to keep going to different Drs until you find the right one. That's what I had to do (after some wonderful advice from people on this forum a while ago). I now have found a Doc who is not only very capable, but genuinely interested in my case. I asked my GP to refer me to a Cardiac Electrophysiologist, and I wish I had done a year ago! He immediately went off and researched some of the long term side effects of the chemo and radio I had in my 20's and made me feel like I wasn't going crazy lol. The first thing
  9. I am 34 and have been married for 3 years. My Husband works full-time with 6am starts. I currently work about 5 hours per week (when I can) but before I fell ill I worked 25-30 hours per week. My Mother comes to stay for a night once a month or so and helps with the housework etc, she would no doubt help more often but my parents live 3 hours away. My Husband doesn't really help with the housework etc but he is very supportive in many other ways.
  10. My Husband is terrible at housework! Plus he could also burn water lol. But at the same time, he never ever criticizes my housekeeping abilities (or lack thereof). Sure he never picks up the vacuum but it's not important compared to all the things he does do for me. Since I've gotten sick, I've learned to live with a bit of mess.
  11. Very interesting to read all the posts here! This is something that I've been thinking about too, I am 34 and have no children. After a disastrous first marriage I am now married to a wonderful man and do occasionally think about kids. My main fear, however is that I faint. What happens if I faint while bathing or carrying a baby? I often wonder what women in this situation do.
  12. I have terrible fatigue also, and it doesn't seem to matter how much or how little I sleep. Sometimes I sleep for 18+ hours per day and sometimes I can hardly sleep at all. I sometimes nod off on the couch but most of the time the fatigue is like being in slow motion with a lead body (if that makes any sense! lol) like I can't quite summon the energy to pick something up etc, or get up and walk around.
  13. I would like to thank everyone for their advice. I have an appointment the day after tomorrow with an Cardiac Electrophysiology Dr who says that one of his 'special interests' is Syncope. I am quite excited to be seeing him and hopefully he can help me.
  14. Thankyou Sunfish. I did do a search on the topic before I posted but must have missed that, probably because I was looking for 'Emergency' and 'Hospital' in the thread title rather than 'ER'. My apologies My husbands cousin recently passed away due to an untreated minor head injury, and as I regularly hit my head when I faint my husband has been very concerned that I don't seek medical attention afterward. I have actually fractured my skull twice in my 20's (not POTS related, more stupidity related lol) with no real ill effects other than monsters of headaches, I know that the force has to
  15. Hello fellow housebounders! I am home pretty much 6 days out of 7, though I do go to work (sometimes!) on a Sunday for a few hours. My Husband does kindly take me out of the house when I am going stir crazy, or for shopping etc but I don't like to ask too much as he has a very physical job and comes home very tired. I am 34 and married - 3rd wedding anniversary coming up in a couple of days - and I live in Australia (my husband is American though, I met him there in 2004). I love Facebook, and emailing! It really helps me feel connected to the world and gives me a good way to interact w
  • Create New...