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Everything posted by It'sMyLife

  1. Does anyone have any info to share with me as to why Propranolol seems to be the beta-blocker of choice for a lot of people here? I think I might need to switch beta-blockers, so I'm trying to gather info. In addition, my EP told me that using midodrine with a beta-blocker can be VERY difficult to regulate, but I have see several people here doing just that. Anyone have experience to share there?
  2. I want to confirm what I think I read a while back. Is it true that beta-blockers can cause allergy symptoms to worsen? My allergy symptoms have been awful this year, but they have reached an all time bad within the last month. The one thing I have changed is starting Bystolic after being off of a beta-blocker for several months. I used to take Toprol XL. I will be so upset if I determine that this new beta-blocker is what's making my allergies unmanageable. But, I am loosing my mind with these symptoms! Thanks for reading.
  3. Well, when I started Florinef my back broke out insanely! Corticosteroids can affect hormone balances, so I'm sure the cortizone shots could have influenced your skin. In the same respect, I tried out b/c pills for one month and my back was smoother than it's been in years. Too bad all the other side effects are keeping me from staying on the pill. Good luck with your skin! I know how stressful that alone can be. I have had to take Accutane twice in my life.
  4. Thanks for the replies! I want to post some more stuff, but only have a minute right now. So, I'll check back when I have time to sit with my thoughts. Just wanted to let you all know I'm reading and appreciate the support. Thanks!
  5. I was thinking it would be a good idea to get some parents of toddlers together on one thread so we can get a little support group going. If nothing else, at least we could add each other as friends so we have someone to message if we have coping questions or helpful suggestions. I have a 2-year-old (almost 2.5) daughter. I wish more than anything I could be the active parent that she needs and it it is killing me that I can't. I want to put her in preschool to give her more of a creative outlet where she can wear herself out with some other kids. The problem now is that I can't afford it. My husband is active-duty Air Force and I do temp work as a Dental Hygienist. I don't have the energy to do it full time and my work takes me out of town, so I'd never get to see my daughter if so. I'll wait and see if there is an interest in getting this thread going and share more info if so. Unfortunately, my DH isn't very motivated to do many activities with my daughter. While I hate the word lazy (because that's what I was considered for 10 years until I got my Dx), it's the impression I get from my DH. He doesn't seem to have any physical reason for not engaging my DD in a more active lifestyle. He does have ADD, but I don't know how much this influences his activity (because he doesn't tell me how he feels). I know I did some rambling, sorry. Anyway, I'm just very down right now and don't see an end in sight soon. Hope to meet some parents that have been there and have some useful info to share. Thanks for reading!
  6. . Thank you! That is a pick of my mom, my daughter and me on my DD 2nd b-day back in April. We were on the swing on our backyard deck. It's a pleasant memory. But, we couldn't get my DD to smile for anything. lol It was making us laugh. Very interesting about the EB test. I've never heard that. I tested pos twice in college which is when my POTS Sx first started actually.
  7. All I can say is I hope I'm never sick enough that I would consider this.
  8. I see stem-cell research being the one avenue that will show the most promise for dysautonomia one day. They've got to find a way to repair/rebuild the ANS.
  9. Here is the link to my post updating everyone on the droxidopa trial.
  10. Here's the link to my post about the droxidopa trial.
  11. Wellbutrin affects norepi and dopamine so it could skew results. That's what I understand anyway.
  12. I have posted in a few different threads about starting a droxidopa drug trial. I have decided to update everyone with a single post instead of replying to the others individually. Unfortunately, I did not qualify-the second time that is. The first time I was eval'd, I qualified but had to stop taking Wellbutrin in order to start the drug. So, I weaned off the med and then had to wait 2 more weeks for it to be totally out of my system-according to the study rep. By the time the two weeks was over we were about to leave for vacation for 1.5 weeks. So, the rep said to call back after we returned home. We got home Sunday night and I called him Monday morn. I got in for my re-eval on Tuesday. So, after I gave a urine sample and gave two viles blood (and did a million-lead ekg in a freezing room) they did the standing test. At the advice of my EP, I let myself get a little dehydrated and also skipped breakfast. This was supposed to help me qualify. Well, upon standing, my bp spiked from around 114/74 to 180/104! So, I was thanked for my time and told they were sorry they couldn't help me, and that I would still get my check for the visit in the mail. Then, I waited an hour to see my EP and asked him for something to control the tachy. He elected to Rx me Bystolic. And we are both going to try to find out how I might be able to get ahold of Ivabradine. However, with bp's spiking that high, maybe I do need to be on a bb. The only prob is the days when my bp is around 98/70. Well, I'm only on day 2 of the Bystolic at half strength and can already feel a difference. I didn't have a huge tachy event upon getting out of bed this am. Sorry I don't have more encouraging news to pass along about Droxidopa, but I guess it wasn't the med for me yet. I asked the rep how long before he expected it to be on the market and he said approx 18 mos. So, maybe that will give some of you hope.
  13. My Rx is for morning, but I used to take Toprol XL at bedtime. The Toprol was extended release, but I don't know about whether the Bystolic would work as well if taken at bedtime. Thanks!
  14. I'm wondering if there are any drug trials going on in the US for this drug, or if anyone is able to get it from another country (I don't know the legalities on this). Your experiences would be appreciated. Thanks!
  15. I have the same thing happen to me. When I wake at 6 am for work, I'm beat by the end of the day--but, I don't have the mid-morning-through-afternoon POTS drama I have when I get to sleep in until 8 or 9 am. I am still confused by this.
  16. My back broke out bad while I was on Florinef and my period came a week early also. I also had my typical menstrual migraine but it lasted the whole two weeks I was on the med!! I did not fair well with the hormonal effect of Florinef. It was my understanding that this medication does not contain estrogen but effects how your body either produces it or uses it.
  17. Thank you so much for sharing your experience. I think about having this surgery almost daily. I have always had a very small chest and then I breastfed my DD for 19 mos. So, I was left with even less! The biggest challenge for me is finding bras and my small belly sticking out farther than my chest! I just want to feel feminine and be able to find bras. I don't want to be big enough that people look at my chest or wonder if they're fake-just average! Thanks again!
  18. I think since you are already in Ohio, it would be worth it to travel to Cleveland or Toledo (to see Dr. Grubb). I'm from Ohio and praying to get back there soon so I can see Dr. Grubb.
  19. Brye- Thanks for sharing. How long had it been since you were employed somewhere when you applied for SSDI?
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