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  1. My husband and I are very interested in adoption. I have POTS. We're just starting to look into adoption and it sounds like for a lot of agencies and countries, the fact that I have a chronic illness is going to be a problem. Has anyone here been able to adopt with POTS in your medical records? Thanks!
  2. Well, I had my baby last week! She?s perfect and so precious. wish you could all stop in a see her! I have a lot of trouble sleeping due to POTS?I think. Now with my baby to feed at night it?s been extra ROUGH. I?m going to go talk to my doctor about it but he?s new to POTS. So if any of you have some ideas for me of things that help you that I could talk to him about, that would be helpful. I have trouble falling asleep. Usually takes me at least an hour. Then I have trouble staying asleep. If I over do it during the day or am feeling extra POTSy then my fast heart rate makes it impossible to unwind and sleep. Feels like too much adrenalin and my mind races too. The less sleep I get the more POTSy I am the next day?. I take amitriptyline for sleep. I guess it helps some, but not much. I also have ambien that is safe for nursing but I only like to take it when I?m desperate. What has helped you guys? Is there anything I can take or do that would relax my POTSy body and help me fall asleep or stay asleep? Last night Baby did great. She slept for 3 to 4 hour stretches but I was still awake most of the night. So frustrating.
  3. Is there any connection between POTS and Anxiety? Chronic anxiety/depression problems are really common on my Mom's side of the family. MY mom's had a rough winter with anxiety and at times her symptoms are a lot like mine with POTS....insomnia, racing heart, feelings of being way too wired, irritable bowel stuff. I don't think she has POTS and I dont think my POTs is an anxiety problem, but I do wonder if there is a connection. She is now being treated with some meds that are really helping her, especially with sleep. (Remeron and Neurontin) I wonder if those types of meds would help me with my major sleep issues. any thoughts?
  4. So, if my heartrate does go really high durring labor is that hard on Baby? Thanks for all your input. it's helpful.
  5. I'm due to have my first baby in 3-4 weeks! ya! I'm really hoping to be able to have a natural labor and delivery, with as little medical intervention as possible....as long as baby is doing good. So far my pregnancy has gone really good. Super POTSy in the first four months...felt less POTSy than my usual in the second trimester....and still doing good but more POTSy in my last few months. My concern is how my POTS will effect my labor and delivery. I'm a bit worried that the labor will make my heart rate and blood pressure go crazy, and that then the midwife or doctor will be concerned and not allow a natural birth. I'd be currious to hear how others POTS symptoms have responded to labor. Are there things I can do durring labor and even before, to help keep my heartrate from getting super high? I'll try to drink alot of water before and durring. Is there something better I should drink? I also have thigh high stockings I'll wear. My midwifes are very supportive of my wanting to have a natural delivery but have expressed that they are unsure of what to expect because POTS is new to them. They asked me how I think I'd respond to an epidural if we have to go that route. I'm not sure, but I'm a bit concerned that I wouldn't handle it well. Anybody with POTS had an epidural? Thanks!
  6. yeah, what you write sounds like me....I can tell my belly is going to get tight, before it actually does, by the pressure in my head and faster heartrate. I'm glad to hear Adelaide is doing great. I'm sure she's cute cute!
  7. I'm 34ish weeks pregnant with my first little one. I've been having lots of braxton hicks contractions for the last few months. They are not a concern. Here's my question. Right before and durring the contractions my chest feels tight and I feel a lot of pressure in my chest and head...especcially if I'm laying down. It's kinda like if I stand too long, get super POTSy...then what my chest and head feel like when I lay down. Sometimes I feel my face flush durring the contraction. So is all of this normal with a little contraction or is this a POTS reaction? So far my pregnancy has gone super smooth without any real problems. I'm hoping my POTS won't interfere with my labor and delivery. My midwife was a bit surprised how early I started feeling the braxton hicks and how often I get them, but isn't concerned as long as they don't get rhythmic. She said the pressure I notice may be my being more aware of my body because of my POTS and also my body being hypersensative to things. she said the contraction is probably putting a little pressure on the arteries down my back causing the feeling of pressure.
  8. Thanks Maxine. that's helpful info.
  9. they said they'd make sure and work it out for me to see Dr. Grubb next time we're in the area. It was a bit tricky to get an appointment the week of christmas. We're in the area for a short trip. Once I'm done with my pregnancy they'd like me to come back and talk more about trying some treatment options. We didn't do any testing. We mostly just talked through things. I had sent in a really thorough medical history and an explanation of my symptoms. I also gave her some copies of a couple of my own "ttt" that I'd done at home. She felt like all of it showed very clearly that I had POTS. I'd like to do further testing with them for things, but she felt like because of my history and just watching my heartrate durring the appointment that a TTT isnt needed. I also have super bad raynauds with chilblains and some kind of underlaying autoimmune process going on. She was pretty certain it was Ehlers-Danlos, but I'm not sure. Someday I'll have another appointment with Dr. Grubb and talk through more of that and hopefully get a few more answers. I may be able to do a little of that through my doctor in Alaska. For now, I'm thankful for what i learned from Beverly and was super impressed by her.
  10. I finally have a POTS diagnosis! After 20 years of not knowing what was wrong. I had an appointment with Dr. Grubb's nurse a few days ago. She was wonderful. I've been suspecting that POTS is the answer to my medical mystery for the last few years, just from my own research. It was so great to finally get to talk to someone who knows POTS so well and actually understood my illness. pretty big break through for me. I'm thankful. Erin
  11. nauthiz, My face gets all tingly and warm, but only after eating pineapple. I figured it's some kind of reaction to pineapple. My hands get really tingly at times. I haven't ever connected it to having just eaten though. My eyes get red and feel hot and sore when I'm feeling extra gross, or if I'm on a vasodilator or some form of estrogen, but again I havn't connected it to my eating. Sorry this is probably not very helpful for you.
  12. I just started giving support stockings a try. I'm trying 20-30mmHg, waist high. I checked my blood pressure and heart rate with and with out the stockings. Without the stockings I had a 39 beat increase (when going from laying down to standing). It went up to a 59 beat increase after 10 min. After putting on the stockings I had an increase of 25, with an increase of 41 after 10 mins. with and with out the stockings my bp went up. It went up a little less with the stockings. I think the stockings are helping some. Do you think a higher compression would be better? Also the stockings make my toes sore some of the time. Just from the pressure...like wearing tight shoes. Has anyone tried the open toed stockings? Are they ok? Does the open toe cause pooling in your toes? Thanks!
  13. One supplement that really helps me is called Relora. It supports your adrenal glands. I'm a little less tired with Relora. I also sleep better.....it helps me not feel so "wired tired." When I overdo it I get really chilled and stressed totally wasted. Relora helps lessen that feeling some. It also helps me keep from going down hill so fast when I am under stress. I notice my symptoms are worse when I go off Relora.
  14. thanks everyone. Your info and advice is helpful. Last night was horrible! I think I'll come off it for a while, give my body a break and maybe try it again at a quarter dose.
  15. I've been on florinef for a week. (.1mg) I normally have quite a bit of trouble with my sleep, but this week has been extra rough. Since I started florinef, every night I'm waking up after about 4 hours of sleep, exhaused, but wide awake, feeling wired and my heart pounding. I can usually fall back asleep but it takes 2 to 3 hours to get there and then I'm awake again after an hour. I'm wondering if the med is making me wired at night and messing up my sleep. My usual nausia has also been worse this week. I've been needing to eat more often and needing to get up durring the night to eat something to calm the nausia. Are these typical reactions to florinef?
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