Rachel

Congratulations! I'm sure you'll love having a little girl and the new addition to your family. I have POTS and recently had a girl. This last pregnancy was harder than my pregnancy a few years ago with my son. It could have been harder for several reasons: my health is worse now than it was in the past, every pregnancy is different, I was caring for a child while pregnant, I wasn't sleeping well, etc. With my son I felt better immediately, and my health was better throughout my pregnancy. With my daughter I was more tired in the first trimester (which I'm told is normal), and then I was just at "normal" for me for the next few months. I actually felt my best when I was in my 9th month of pregnancy! I hope that the rest of your pregnancy goes well for you. Be sure to check back in with us sometimes and let us know how you and your baby girl are doing. Rachel

I'm glad to hear that things are still going well for her. Thanks for passing along the update.

Yay! I'm so glad you have a diagnosis now! Sorry you have POTS, but glad that you at least know what is going on now. Rachel

Happy, Happy Birthday, Melissa!!! Rachel

I had a baby 4 years ago and went through labor and delivery as naturally as possible. Just a few days ago I had a baby, but had to have a c-section (for reasons other than POTS). I'd be happy to share about my experiences with both. I can't do so at the moment, though. I'm still very tired and recovering, but I'll be back. If I forget to come back to this topic, please feel free to send me a personal message and remind me to do so. Rachel

I should also add that while pregnancy is relatively easy for me, the postpartum time was very difficult. I was so tired after labor and delivery. Tired really can't even describe it. Being a mother is physically very hard. I have been blessed to have a LOT of help from my husband, family, friends, church, and neighbors. There is no way I could be a good mom without all of the help I have received. My health is worse with pregnancy this time around (it was already worse before I got pregnant, though). I expect that the postpartum period will be even more difficult than last time. My husband is planning on doing all of the midnight feedings. I would like to do as many as I can, but I know that realistically I definitely won't be able to do even half. He'll have to do most of them. I don't want to discourage you. I don't know what your health and level of functioning are like. I just thought that I should come back and paint a realistic picture of what after pregnancy is like for me. Pregnancy has been great, my son is healthy, and I have a very healthy baby girl on the way. The pregnancy is the easy part for me, though. It's the postpartum period and the toddler years that are so tough. I'm so glad that I have the support system that I do. In my situation that makes all the difference. The support I have makes being a mom possible in the first place. Rachel

Hi Elena, Many women with POTS do have normal pregnancies. Here is a link to the article to which Katherine referred: Outcomes of Pregnancy in Patients with Preexisting Postural Tachycardia Syndrome Four years ago I had a very healthy pregnancy. I felt better than normal the whole time I was pregnant, especially once I got to my second trimester. The increase in blood volume helped a lot. I now have a healthy, happy, almost-4-year-old. I am also currently pregnant (due in just a few weeks). This pregnancy has been harder in some ways. My symptoms didn't improve this time like they did before. Most of my symptoms have stayed the same as pre-pregnancy. I have been more fatigued than normal, though. I had problems with mild anemia a couple of months ago, but that is a common pregnancy problem; it isn't POTS related. The fatigue is better now that my iron level is back to normal. I've also had some flares in my gastroparesis during this pregnancy, making it hard at times for me to consume enough calories. However, despite not being able to eat as much as I need to, the baby is growing very healthy and very strong. She is doing so well that it is truly amazing. I hope this information helps a bit. And, by the way, welcome to the forum! Rachel

1. For those of you with symptoms such as acute chest pain or abdominal pain (I too suffer from gastropariesis, my GI doc called it an atonic bowel), how many of you call the doctor when the symptoms get worse or change? I have never needed to call the doctor with changes in my gastroparesis. I just change my diet as needed (ie, go on a liquid diet for a few days). I keep my doctor updated at appointments. If it get to a point where I am not able to get enough fluids or nutrition, then I would call my doctor between appointments. 2. How many times do your doctor's say go to the ER? My doctors have never told me to go to the ER. I manage my symptoms at home. Rest, fluids, elevating legs, etc. My doctor has told me to go to the ER if my heart rate gets into the 30s, but it hasn't gotten quite that low. The ER is just for emergencies. I've never had a life-threatening emergency with my dysautonomia (most of us don't). Years ago, when I was first diagnosed, my doctor told me, "This is life inhibiting, but it isn't life threatening. You may feel like you're going to die, but you won't." I always have symptoms; I never feel good. Some days I feel really awful, can't stand, can't get out of bed on my own, can't think clearly or answer yes/no questions. It is miserable. Rest, fluids, sleep, and meds help. 3. How many of you have given up on the ER? I've never been at all. 4. What do you recommend? If you can manage your symptoms at home on your own, that would probably be just as helpful, if not more so, than going to the ER. Fluids, salt, and meds can help. Sometimes you just need extra rest and sleep, and in time your symptom flare will settle down. Hope this helps. Rachel

Thanks for sharing the news. I hope that things go well for Erika this time. Rachel

I took Lyrica for a while. It helped a lot with the burning/pins and needles sensation in my feet. I couldn't continue the med because of side effects (constipation), but if it weren't for that I would have continued the medication. There have been discussions about Lyrica in the past. You may want to try a search to find out more information. Rachel

I'm sorry. We'll miss you. I hope you'll be able to get back online again soon. Rachel

That's helpful information, Katherine. Thanks so much for sharing. Rachel

Hi Ernie, Thanks for checking in with us. It's great to hear that you've had such improvements! I hope you continue to improve. Rachel

I always wear compression hose and abdominal compression while travelling. This helps to keep as much blood from pooling. I also recline my seat and put my feet up on the dashboard. It's not a safe way to travel, but without doing that travel wouldn't be possible at all. When I can no longer be in a reclined position I lie down flat on the back bench of the van. I hope your trip goes well for you. Rachel

I'm really sorry things are so bad for Amy right now. Thanks for letting us know, Michelle. You are in my thoughts and prayers, Amy. Rachel

I was first prescribed 100mg of Provigil in the morning and another 100mg in the early afternoon. That was too much for me, though, so I backed it down to just 100mg in the morning. I can't take Provigil daily. I can only take it for about 4 days, and then after that I slowly get more and more fatigued if I continue on the med. Then I have to take Provigil in the morning just to get back to baseline. It is very helpful for me ocassionally, but daily use makes my symptoms worse. I've never heard of it being that way for others. Rachel

I hope your birthday was wonderful, Flop! Rachel

I hope that Mack will be on the mend soon. Rachel

Lately I've been having constant headaches that sometimes turn into mild migraines. Because I'm pregnant I am only supposed to take Tylenol, which does very little to help with the pain. I recently started taking magnesium supplements as well, at the suggestion of my POTS doctor. I haven't had as bad of migraines since starting the magnesium, so it may be helping a little. I do still have a constant headache, though, and extra sensitivity to light and noise. I spoke with a nurse at my OB/Gyns office last week, and she had a prescription called in for me - Fioricet. But after reading up about it on RxList.com, I'm really not comfortable taking the med. It contains butalbital, acetaminophen, and caffeine. I'm already taking Tylenol, and I do still drink a cup of coffee each morning to raise my bp. So I already have acetaminophen and caffeine daily. I don't want the butalbital (a central nervous system depressant) that is also in the the Fioricet. In the last year I've had some adverse reactions to meds that affected the central nervous system like that. My blood pressure is normal, so the headaches are not due to high blood pressure. I am keeping up with drinking fluids. All my other symptoms are the same as normal, and I'm not having any problems with pregnancy. Headaches and migraines are something I get occasionally, but I've always been able to take ibuprofen or excedrin to help with the pain. Have any of you dealt with headaches and/or migraines in pregnancy? If so, did you find anything that helped? Rachel

I have a cup of coffee every morning, and it helps me. I recently tried to go off of coffee, but was worse off without it. It might be worth trying again, but that's up to you. Everyone is different. Some of us can tolerate coffee, others cannot. Rachel

There is a Physicians List on the main DINET site. Have you checked this to see if there are any doctors listed there that are closer to you? I hope you can find a good doctor. Rachel

You don't have to faint or have a drop in blood pressure to be diagnosed with POTS, although some POTS patients do. To be diagnosed with POTS you have to have an increase in heart rate of 30bpm or more within 10 mintues of standing. Check out the main DINET website. There's a lot of information there about POTS. I think that will help you to understand POTS and dysautonomia better. Rachel

You may get an unbalanced picture from replies here. There are a lot of people with POTS who do improve with treatment, but those who improve aren't as likely to stick around support forums. It's those of us who are still sick that tend to come here. For me personally, treatments do help some, but overall my health continues to decline. Rachel

Yes, my symptoms get much worse when I don't get enough sleep. If I go for too long without adequate sleep I become very non-functional and need help with absolutely everything. I hope you can get some good sleep soon. It's tough to function without it. Rachel

I'm so sorry. I hope he'll be on the mend again soon. Hang in there. Rachel