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aunie

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About aunie

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    Advanced Member
  • Birthday 03/06/1983

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  • Gender
    Female
  • Location
    South
  • Interests
    Love Books, Movies, Photography and anything new and exciting!

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  1. I had a complete hysterectomy on April 30th of this year, due to pelvic congestion and many other nasty symptoms. We decided to take both my ovaries because both ovarian veins were dilated very large, even after embolization. I also felt like I was on a roller coaster every month with the hormonal ups and downs, and it was causing the POTS to go up and down too. I did pretty good until day 4 post op and then I got a huge wave of anxiety, insomnia, almost manic type episodes, along with joint pain and hot flashes. I am so sensitive I think to any changes in my body, so even just after few d
  2. I used to get vertigo alot. Now only every once in awhile. I had a tube placed in my left ear and it has helped tremendously! I have had it for two years and it needed replaced last year, during the time it needed replaced, I noticed my symptoms coming back and getting worse, New tube and symptoms went away again. Banana's- Embolization worked for about four months. My body just decided to make the veins larger, and the blood re-routed to other varicose veins in my pelvic area. So I got more pain in different areas. It got so bad before I had my hyster that I was literally tipping the be
  3. You are not the only one dealing with being bedridden, that's for sure. I passed out in February 2011 and ever since then I have steadily declined. Currently I am pretty bedridden. I do get up to use the bathroom and shower in a chair. I do from time to time try to get up and grab a quick bite to eat when no one is home ( I mean real quick ), but for the most part I am in bed. I don't even sit up much either. I have Pelvic Congestion and it greatly contributes to the pooling, but I recently had a hysterectomy and it has improved my blood flow. I use to get dizzy even in bed while lying
  4. I have this too. I find that it seem's harmless as well, just annoying and it was way scary when if first started happening. I also think it's some weird dysautonomia thing.
  5. Thanks so much for this post! I totally needed to hear this. I have really done down hill this year, to the point where I am in bed all the time and even sitting up is not going so well. I feel trapped in this little box and I really need to try to see past it. What yu talked about really helped me put my own thoughts into perspective. I have really bad food/drug and chemical sensitivities too and I have been making an effort to try things anyway, even if it's scary. I try to stay calm and try not to anticipate the reactions. This is helping me also with adrenaline surges and backlash.
  6. Great everyone! Hopefully one of these will work.
  7. Thank you both! At least I know where to look now.
  8. I know a lot of you have played the supplement game and I have been reading some of the threads out there, but my question is, Which brand of vitamins is best? Here is my prob, I am allergic to so many things and do not tolerate preservatives or dyes. I am only eating like five or six different foods and I really need a multi-vitmain, but I am really scared to try any. I am also having a hard time finding a good quality allergen free vitamin. I was hoping you guys could give me some recommendations. I would like at least to try the allergen free ones and see if there is one I can possibly
  9. Issie, Thanks so much for sharing. I am terrified. I am afraid that lack of hormones is going to make me crazy. I already struggle with anxiety and bouts of the blues. but I think it's partly my hormones causing those flares. Of course the adrenaline issues too. I'm just afraid I'm going to make myself worse and it's not like I can put it back in once it's out., I just don't know if it will be worse or better without my ovaries. Are there alot of different hrt options? How bad was the pain? I am worried about the pain too, because of my allergy to pain medicine. I'm just going to keep
  10. I am in the same boat right now. I have pelvic congestion and had them treated with vein embolization. They put metal coils inside my ovarian veins to block out the blood flow. It worked well at first and got rid of my pelvic pain and back pain, but I am going on 9 months post op and right this very minute I am experiencing pelvic pain again. It has been so bad that the last few days I haven't been able to sit up much. The blood just pools in my abd/pelvis and it feels like a ball, I can also feel the blood in my vaginal area too. They told me this may happen. That every person is diff
  11. My doctor let's me do them as needed. I don't do them on a regular schedule but I can have them whenever I am not feeling well. We set them up through a home health agency and a local pharmacy. The pharmacy brings me the fluid and all the supplies and I just keep them here at home. Then I call the agency when I need some and they come start an IV and start the first bag. I hook up the second or however many we are doing and then when I am done I flush it. If I am feeling super sick and I think I may need more in the next few days I leave the IV in and just flush it morning and night to
  12. I too just started florinef today. I took a quarter tablet and so far I'm a bit shaky and a little nauseated. I suppose a little anxious too. My hands and feet are clammy. Overall not too bad. I'm hoping this works, I haven't been able to tolerate beta blockers or midodrine at all. I don't know for sure but I'm hoping that after awhile I will get used to it and I will stop shaking. So far I feel that I have less blood pooling and feel a little better when trying to stand, but nothing miraculous. Thanks for your post, all the responses have been good for me too. Andrea
  13. I also worked as an ER triage technician for eight years. I finally couldn't handle the long shifts, even only doing it 2-3 days a week. The last two years I tried working in an office, but even that became too much. I have been home for 15 months and it doesn't look like I will be going back anytime soon. I wish I could find something I could do from home, I need something for myself, I just don't know what yet.
  14. I actually got POTS a few weeks after my second child was born. I was so terribly sick and I also had a four year old to take care of too. They both gave me the strength to get through the days, gave my life purpose and I would never take it back. I feel fairly certain I would for sure try to be a parent, even with this illness, I just got lucky to be pregnant before POTS. Although I do admit it is very hard. Getting through those baby years with my daughter were at times pretty scary. I look back now and I really don't know how I did it. Thankfully I was blessed with a happy baby, who w
  15. I have chest pain and weakness during winter. Whenever I don't get enough sleep or have any sort of infection it gets much worse. It varies day to day, but I always have some sort of pressure and pain on my chest. I think for me it's because I am usually down with infections all winter. Since the first of October I have been sick with constant infection's, one after the other. I think I had a two week reprieve once and now I'm back at it. This causes most of my chest pain and extreme fatigue. I've been in bed all winter so far. I can usually avoid flare's if I take care of myself, but
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