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Wendy C.

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About Wendy C.

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    Colorado, USA
  1. I totally relate to what you said! I also have felt like a different person the past 2 years, but have not forgotten or given up on getting back to the tough and energetic person that I used to be. I will not accept a life in the pit, I will escape the pit. I will never give up either!!! Wendy P.S. sorry this is so short but I have killer migraine this afternoon.
  2. Interesting. I've had a similar thing happen this past year, with swelling or lack of swelling. In Sept of 2011, I had an ablation and lost 7 pounds without trying in the 6 weeks afterwards. I was diagnosed with POTS 2 months after the ablation and went on an extreme amount of salt, Gatorade, and water and never had a bit of swelling and didn't gain any of the weight back (and felt horrible for 6 months). Well, the past 2-3 months, I have gained the 7 pounds back and even have a minor amount of swelling in my lower legs and fingers. I wondered if it meant I was getting better, too, althou
  3. My highest was 117/70 and that was on Midodrine, Florinef, high salt and wearing compression hose. Typically, it is about 108/65, but there were a few months there where it was consistently only 95/60. Oh, all of these numbers are from when I was standing up, too. Laying down it is much lower.
  4. Salt tabs every 2.5 to 3 hours, salty snacks twice daily, magnesium every 6 hours, midodrine twice daily, alternating Gatorade and water all day-even when not thirsty, thigh high compression stockings, staying indoors if it is hotter than 80 degrees outside and especially if there is no breeze, being careful not to overschedule my day or my week-only leaving the house for errands or get togethers maybe 4 days out of 7 and not usually on back to back days, avoiding activities that involve standing still, and having hope/positive attitude that I will one day get better! I have already gotten si
  5. Good luck on getting pregnant! If it doesn't work out this month-there is always next month! It took us almost 3 years, but he was worth the wait! I was on Metoprolol during my entire pregnancy and also on Flecainide, a calcium-channel blocker.
  6. That is great! I hope it keeps up for her! Yes, I feel better on days when it is below 82 or so. The past 10 weeks of mostly 95 degree temps have been hard, with only a few days below 85. Even though I stay inside almost all of the time and have our A/C set on 72, if it is above 82ish outside, I am much more symptomatic. I had to increase my Midodrine dosage and almost double my salt tabs and it still wasn't enough. I am so glad that Fall is coming. I have also been able to start up my full exercise routine again the past 7-8 days, whereas the past 10 weeks I could only do small portions
  7. Thanks. I have a call in to my Electrophysiologist, the one who prescribed it to me. I do recall her saying initally that it could give you a strange rash on your neck, but I thought she meant goosebumps or the tingling.
  8. Yes, I cannot tolerate collared shirts or heavy necklaces anymore, along with sitting down in jeans or even my bra line hurts as well, later in the day. But, I can tolerate thigh high compression stockings, spanx-type high-waisted biker short things and even some neoprene abdominal binders at times. We are so weird, huh?
  9. That definitely sounds like an awful way to have to live and I hope that it is only temporary for you. I have seen all of your other posts and it sounds like it is pretty bad for you. I really hope that you can find some meds or supplements or compression or whatever that will help you to improve and feel better. The only way I found several methods that helped me were to research, visit doctors, experiment with dosages, etc. My thoughts on your question are: - it will probably be hard because your muscles are likely very weak after 5.5 months of not walking (I haven't seen you mention in
  10. I was taking 1.25mg of Midodrine twice daily for a few months, then went up to 2.5mg twice daily, and a few weeks ago, I went up to 3.75mg twice daily.(that is 3/4 of a 5mg pill, in case you are wondering) The weeks on end of of 90 degree temps caused too much pooling, thus my increases. Right around the time that I increased to my current/highest dosage, I noticed this 'mark' on my neck. It has remained the same in appearance and does not go away. Sometimes it itches. It is raised, red and sort of in the shape of an upside-down fork, with another small line next to it. The fork-shaped b
  11. Hi BellaRose, Congratulations! Don't get yourself too worried about not being able to play with the baby yet, you never know, you may feel a lot better after the birth. I had quite a lot of relief from my insanely awful symptoms about 6 weeks after my son was born. Really, even 24 hours afterwards I felt a noticeable change. When they are young, the first 6-8 months, all they do is lay or sit around since they aren't mobile, so you can lay around with him/her or sit on the couch together and play. There are lots of great toys and activity gyms that are made for the floor and you can just
  12. McBlonde, how long have you been on Florinef? My guess for your dilemma is that if you've only been taking Florinef for a few weeks or months now, your body has finally changed/adapted to it and can now retain water and salt, like it couldn't before the Florinef. Now, with fluid and salt retention occurring, you are getting the subsequent high blood pressure. I recall a post on here where someone (Kimbellgirl maybe?) said their doctor recommended a certain dose of Florinef for a few weeks until the body stabilized, then a lower maintenance dose. I noticed that I only needed it for about 5
  13. Mine has been as low as 29 and as high as 60, but usually runs in the 35-40 range. Whenever I am on Florinef it is always high, in the 50's.
  14. I don't know how to answer the permanent damage question, but I do notice that I feel so much worse here in CO on the days when it is hotter than about 88 degrees. We have had an exceptionally hot summer, with weeks of 95+ and I thought I was having another relapse, but then when it got cooler (low 80's), I felt good again. Then, it got hot again the past few days and I haven't felt good again. So, I hope that it is only the heat causing a worsening of your symptoms and that it will get better after the summer or if you move back to cooler temps!!
  15. Yes! We saw it only 36 hours after the Aurora shooting and only 1 hour south of where it happened. We were not going to let the horrible actions of one psycho stop us from living our lives to the fullest. It was really good! We saw it in IMAX and this time, it didn't give me very many physical troubles, maybe since it wasn't in 3D? I did let myself run out of water at one point, which was dumb and I felt it, but it was just so good that I didn't want to leave the theater for even 1 minute. Which part(s) do you relate to your medical trials and tribulations, was it what happened in the pi
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