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About deucykub

  • 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 blood pressure (2 hours) and helps alleviate symptoms. It's not a cure, but it helps me last quite a bit longer during the day. The minute I start to crash, I drink a bolus and find myself able to last a couple more hours.
  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 year old.
  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. Big and small! I'm impressed that you are taking two little ones into your home. What a wonderful gift to those children and to yourself as well. I can see your point re: the Provigil. Your attorney might have some advice. For me, it was a life changing addition to my regimen. I wish you the very best of luck with your adoption. Sounds like you will make a great Mom!!!
  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. I've made it through 11 mos and am still sane and breathing, so that was a step beyond what I thought I could do! Here are my tricks so far (but I need more): - We coslept (you do hear every peep, but you also know the baby is safe if you have made every precaution. this might not be advisable with a foster child though, since it is frowned upon by the medical community in general). - We also kept and still keep pre-mixed bottles in a small cooler right by the bed. - We keep a diaper "basket" right by the bed with diapers, wipes, vaseline,and everything we need to change her right there on the bed (yes, we have had a few wet sheets when we mis-timed a changing ) - We traded nights or time zones for the night depending on our working circumstances, such as: - I took 7 PM to midnight; my husband took midnight to morning (newborn months with multiple wake-ups) - We trade nights now that she only wakes up once or twice - We rotate who gets up with her at the break of dawn (although my husband does the lion's share of this), allowing the other person to sleep. - Have a diaper changing "station" set up in the main living area where you spend your days (we use a small night stand - includes diapers, lotions, medicines, changes of clothes, etc. - Anything to minimize moving around - and I change her on our 3' x 3' ottoman) - Baby Proof the main living area of your home and block it off from anything dangerous so the little one can crawl/cruise/run around safely while you interact from a stationary position when necessary (there's is nothing more exhausting than protecting a baby from him/herself ) - Play with the baby in bed so that you can lie down. My daughter loves this time we spend together. She crawls all over me, there's enough space for her to crawl around, but she's close enough for me to keep her safe. We "read" (this would be her opening and closing the book while chewing on it), clap, play pat-a-cake, "talk" (ba ba ba, ga ga ga), and she seems to enjoy the downtime. - Invest in swings, jumpers, bouncers, play-gyms - anything that keeps a baby engaged while keeping him/her safe. - Invest in a baby-carrier and use it early - my little one wouldn't go for this because I tried it too late, but the ability to do other things (such as chase a toddler in your circumstances) with hands free while keeping the baby with you... priceless. - If you have two floors - duplicate everything upstairs and down - two hampers, two changing areas, two sleeping areas, two places to store clothes... everything. - Don't forget to take your medication... ever. My worst days are when I miss a dose. Finally - the last thing I can think of - if your insurance will cover it...Provigil, Provigil, Provigil! It's a horribly expensive drug, but it is the only thing that helps me stay awake (most of the time) during the day. We haven't figured out everything though... my house is in shambles with the exceptions of where the baby plays, sleeps, and eats. Just getting groceries is enough to knock me out for the day. My husband handles most of the household chores that do get done. I'm barely able to work (from home, reclined) - 40 hours is a huge challenge for me now, and my workplace expects 50 hour weeks on a light week (and they are pushing for me to work in-office ). Meals are anything but gourmet (we even reduced ourselves to hamburger helper the other night - I now remember why I stopped eating that in my 20s... yuck.) I wish you the very best of luck - it is possible, and the exhaustion is so worth all the blessings my daughter brings to my life!
  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 I'm in a bit of a bind. Can anyone point me to research or provide pointers/tips on POTS and pregnancy? Thank you so much!
  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 persists. I started out drinking Gatorade but realized I was taking in an extra 600+ calories a day! I have the opposite problem right now. I'm so sick and tired of drinking fluids that I'm subconsciously avoiding them.
  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; although I was sure if it was because of the night dose or my overworking this week.
  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 to be worse, even when taking a full 100 mg Provigil (I was cutting them in half and taking 50 mg most days). I've found myself just staring at my computer trying to get my brain to work, but I don't seem to "come to" until late afternoon. My doctor said I should take this medication in the morning for maximum effectiveness, but I'm wondering if taking it at night my give me enough effectiveness during the day while preventing the drowsiness it's causing - perhaps even helping me sleep! Does anyone take Bystolic or another beta-blocker at night? Does that work well for you? The results are still inconclusive - my vitals prior to Bystolic were around 110/80 sitting and standing and 100 and 130 sitting and standing, respectively. My last reading before Bystolic was 103/79 and 157 standing. On bystolic: 120/67 and 65 sitting to 103/67 and 109 standing.
  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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