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About deucykub

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  • Birthday 07/25/1974

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  1. Hi. I'm hoping someone here can help, since POTS is so frequently comorbid with hypermobility. I've had POTS since 2005, but I am not hypermobile. My DD7 is hypermobile, so far with no symptoms of POTS (fingers crossed!). But she keeps hyperextending/straining her left elbow when she falls - 3 times now in 3 months. It's causing her a lot of pain. Do you have any suggestions on how to help her? They would be so greatly appreciated!
  2. I'm actually down to .1 mg of Florinef. That signature is in desperate need of a rewrite, lol. My blood pressure skyrocketed after being on that dosage for about a year after my pregnancy. I started on a low dosage, was bumped up over time, and then dropped back down. When they dropped down my florinef, I tried Midodrine again (my first trial a few years prior results in bad headaches) and was able to tolerate it this time. My meds are currently 30 mg Cymbalta, .1 mg Florinef, 5 mg Midodrine (morning, noon) and 2.5 mg Midodrine around 3ish.
  3. AllAboutPeace, thank you for your reply! I am going to look into an abdominal binder, as well. Compression stockings never worked for me because by the time I got them on I was bedridden for the day. The abdominal binder seems like such a logical, smart solution. Thank you!
  4. It's been awhile since I've been on the forums. I did a quick search and did not see anything related to this, so I just wanted to share in case this might help someone out there as it did me. My doctor, Dr. Kluger, Director of Heart Rhythm, Hartford Hospital, instructed me to intake fluids differently. Rather than just drinking large amounts of fluid casually throughout the day, he instructed me to drink a water bolus every few hours. By bolus, he is referring to drinking 16 oz of water in 5-10 minutes (or a non-sugar drink...I use Crystal Light). The bolus creates a temporary rise in blo
  5. I became pregnant following my diagnosis with POTS. For me, it was a very difficult pregnancy. Vomiting through the first trimester, practically bedridden through the entire pregnancy. I'm not sure if I was classified as high risk, but my OB kept a group of specialists consulted at the hospital, and they provided advice along the way. I also was instructed to see a cardiologist throughout the pregnancy who consulted with my OB. I had a Cesarean due to placental previa; otherwise, my daughter's delivery was perfect, and we now have a healthy, gorgeous, entirely-too-smart-for her-own-good 4
  6. Hi! I just moved back to Florida so that I can be closer to family for help with my POTS symptoms. I was seeing Dr. Kluger in CT, who is fantastic. I'm looking for a treating specialist near Merritt Island FL. I've checked the physicians page. It would be more cost and time effective for me to travel back and forth to CT than to travel to Pensacola. Jacksonville is a possibility, but before braving the Mayo web of doctors, I was hoping someone here might have some suggestions. (My search of old posts had brought up nada, but I'm nothing if not an optimist! ) Thanks for your help!
  7. Hi, Thankful! Thank you so much! Those are great suggestions! I particularly like the ideas about cooking a big meal and freezing it and checking out garage sales for pre-owned stuff. We don't know a lot of people where we are, so all of my daughter's things have been new (and pricey). It never once occurred to me to check out garage sales, lol. The idea about bringing her with me to pick out toys is fantastic, too. She should be getting to the age where she can show us what she likes. How cool! You're are so right - somehow we do figure out how to deal with the surprises life hands us.
  8. I haven't been on this site in quite some time just due to the day to day demands of life, but I logged on today to say "Need Help from Moms." So imagine my surprise when I saw your post! Maybe we can trade some secrets - as you can see I certainly don't have it figured out. I have an 11 mos old daughter. We were not planning on having children (because frankly, I had NO idea how I could care for a newborn/infant while managing my POTS). Life, it would seem, had a different plan for us and SURPRISE - the fever-less flu I had for a week was not the flu according to three home pregnancy tests
  9. Thank you! My first trimester has been awful so far, but my fingers are crossed that the symptoms will subside in the 2nd.
  10. I am 8 1/2 weeks pregnant - completely unplanned. We are overjoyed but really scared given my medical condition. I honestly didn't think I could get pregnant! I'm 34 and will be 35 when I deliver, and because I was so focused on POTS, I didn't have any regular OB/GYN visits. Now I am pregnant and don't have an OB that understands POTS! I need to educate an OB fast on POTS as well as POTS and pregnancy. Unfortunately, I can't read or write for long without severe nausea and dizziness (which has left me on short term disability for the month...). Normally I would research this myself, but
  11. Hi, thankful: I haven't had a problem so far with too much salt or fluids. The salt dosage sounds about the same as mine (although, it seems paradoxical that your doctor has you on a high-salt diet with high blood pressure!), but my doctor at Harvard only had me drinking 2 liters of fluid. 3 liters seems like an awful lot. Also, how are you taking in your salt and fluids. Gatorade is very high in calories (80 calories per 8 oz, I think?) and high-salt foods are almost always high fat. If your caloric intake didn't increase, though, you may want to contact your doctor in the weight gain per
  12. Thanks for your replies! I gave it a try last night, and my energy level seems to be higher than when I took it in the morning. My heart rate is still pretty low today (at least sitting) at 75. My doctor was worried about Bystolic's effect on BP for me, too, but given that Propanolol had caused a severe, persistent asthma attack in the past, it was the only option left to get my heart rate under control. We've just been monitoring it pretty closely, while starting at ridiculously low dose. That's interesting you should mention palpitations when taking a BB at night. I had the same thing; a
  13. I started on Bystolic last Friday. My doctor has done incredible amounts of research to try and help my high heart rates while not exacerbating my asthma. Since Bystolic is highly selective to the B1 receptors, we decided to give this medication a very cautious try. I'm monitoring myself closely for drops in BP or recurrence of my asthma (which has been quiet for 2 years now). We've started at half of the smallest available dosage, currently taking 1.25 mg, which we plan to double each week to find my optimum dose. So far, I have not had any problems with asthma. My fatigue however seems t
  14. I bought the OMRON HEM-670IT wrist bp monitor about a month ago and love it. It has a positioning system so that you are sure you are getting an accurate reading. It also has software that allows you to download your vital readings directly from the monitor. The software can export the readings to a pdf file or a csv (readable by Excel) file, and it also shows graphs of your heart rate and blood pressure over time. Here's the link to the Product Information
  15. Thanks, Susan! My doctor tried getting a PA for it, but the insurance company denied it. I'll be starting the appeals process as soon as the denial letter arrives, which apparently they refused to send to my doctor. I'm so glad that Medicaid covers it for Sara!
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