Rachel

That's great! I hope he continues to improve. Rachel

I'm glad you were able to get to the bottom of the problem. Don't worry, you didn't cause any inconvenience. It only took me a milisecond to click delete. You had much more work to do than we did. I hope the scammer leaves you alone now. Rachel

It sounds logical to gradually increase activity. That works for healthy people, but as Firewatcher and Katherine said, it doesn't necessarily work for us. Your body probably has a limit to what it can do each day and still be at baseline. If you push it too far, then it takes time to recover. Going to bed earlier may help. I often find that I need to go to bed early, but I don't actually need to sleep. I just need to be still and completely horzontal. I try to go to bed at 8pm every night, but I don't usually go to sleep until 4 or 5 hours later. I feel my best if I spend 15-18 hours a day in bed. Keep trying out different levels of activity and rest until you find one that works best for you. It won't get you feeling normal again, but hopefully it will get you to feeling as good as possible. Coffee and provigil also help me. I drink a cup of coffee every morning, and sometimes one in the afternoon. Provigil I only take on a day when I especially need it. If I take it daily then I slowly get more tired and more weak. I hope you can find something that helps you a little. It's hard being a mom with little ones. Hang in there. Rachel

Kayjay, I do the same thing. I've tried all different kinds of support hose/stockings and compression shapewear. Knee high compression stockings and shapewear that goes from mid-thigh to waist is the best for me. Endure, toeless compression and warm socks keep my feet warm in the winter. My toes are more cold if I don't wear toeless. Rachel

I tried Klonopin for sleep a while back. It worked well for helping me sleep, but I was always too sleepy the day after taking a tablet. I had 0.5mg tablets, but even if I cut it in half it still made me too sleepy the next day. Rachel

As Poohbear said, doing a search on the forum will give you a lot of information. Sunfish wrote a lengthy topic describing her time at Vanderbilt. It will probably answer a lot of your questions. You can find it here: The Vanderbilt Chronicles. I hope that your time at Vanderbilt is beneficial for you. Rachel

You can't put an avatar on the forum by uploading from your computer, but you can put one on by linking directly to it. You will find information on this in Melissa's topic, Helpful Hints for Forum Participation. Rachel

My guess would be that they thought you were a spammer or solicitor based on the number of friends requests you sent out in such a short period of time. I don't know how one would go about getting back on. I don't know if you can just sign up again or not. Rachel

Hello, Anne, and welcome to DINET. I'm glad you're able to post now. I've never been to Dr. Novak before, but I have heard that he is good. You might find some helpful information if you try a search for "Dr. Novak" here on the forum. The search function is in the upper right hand corner. That's great that you have family nearby to stay with while recuperating from the travel and doctors visit. I hope that your appointment goes well and that it will be beneficial for you. Rachel

Do you have a friend or family member nearby who could cut your hair? If not, maybe there is someone who has a hair cutting business out of their home and would be willing to cut your hair for you. Perhaps they wouldn't have the same rules that a solon does. Rachel

BellaMia, Your friend probably did not complete the registration process. This happens when new members do not fully read the registration information. All new members must email Nina before their registration can be approved. Hundreds of spam requests come in each month. For this reason Nina has to manually approve each request for forum membership. This takes about 24-48 hours. Rachel

I have tried numerous medications to help with sleep. They usually help me with sleep, but then leave me too groggy and sleepy for the rest of the day. I have had success with both Melatonin and doxylamine succinate (brand name: Unisom). However, I can only take 12.5mg of the doxylamine succinate. If I take the full 25mg tablet then I have a hard time sleeping. Benadryl doesn't work at all for me. It always keeps me awake. I hope you can find something that works for you. Rachel

I like the glacier freeze Gatorade. It is a light blue color. There is also a light purple one that I like, but I don't remember what it is called. For something different in the winter, sometimes I make Russian Tea with powdered orange Gatorade instead of Tang. When I'm cold, it is nice to have a hot Gatorade drink. Here is the recipe I use if you are interested: 2 cups powdered orange Gatorade 1 cup instant black tea 2 teaspoons cinnamon 1 teaspoon cloves Mix ingredients well and store in an air tight container. To serve: Put two heaping teaspoonsfull into a cup of hot water. Stir and enjoy. Rachel

Yay! Congratulations, Erika. Rachel

Hi Dani, Congratulations on your soon to arrive little one! I have had two epidurals. When my son was born four years ago I had an epidural in place for the last two hours of labor and delivery. I wasn't on any medications at that time, and my bp stayed stable. With my last birth, I had to have a c-section. I had an epidural, and this was a higher dose of the anesthesia because I needed to be completely numb for the surgery. I did take my 10mg of midodrine around the time the epidural was given to help keep my blood pressure up just in case (my doctor and anesthesiologist approved this). When you have an epidural, your blood pressure will be monitored regularly to make sure that it doesn't drop. If it does, they can give you medicine to raise it. Mention your concerns to your doctor so that they are aware that you have problems with your bp. They'll watch out for you. Rest whenever you can, and enjoy your baby. The sleepless nights are hard, but they will soon pass, even when it feels like they are lasting forever. The next thing you know, your baby will have turned a corner and will be sleeping more. Then you blink and your child is walking. Enjoy each stage. Each age has its own challenges and rewards. All the best, Rachel

I only know of two books, both by Dr. Blair Grubb. They are The Fainting Phenomenon and Syncope: Mechanisms and Management. I have never personally read them. They might be more technical than what you are wanting for your family. Have you seen the DINET documentary? It has been very helpful for people's family members to watch and understand what those of us with POTS go through on a daily basis. You can watch the trailer for the documentary and purchase it from this page: DINET Documentary. Rachel

I have moved a lot in the past 7 years. I'll share some of my tips. A few years ago I moved from Alaska to Georgia. Talk about a climate change! I don't tolerate heat well, so the temperatures were definitely a concern for me. For the most part I stay inside in the air conditioning in the summer, but when you have to go out, just that short walk to the car can be really hard. I have found cooling vests to be a huge help. There are days when it truly makes the difference between being able to leave the house and being stuck inside. As for packing - I have found it very helpful to number each box. Packing and unpacking take me a lo-ooooong time. Even with help, it takes me almost a year to unpack and get settled into a new home. Because there will be items in boxes for months on end, I put a number on each box. Then I have a sheet of paper that lists the main items that are in that box. When it comes time to unpack, I know exactly which boxes I will need first (current season's clothes, some kitchen items, bathroom necessities, towels, sheets, etc.). I also know which boxes can stay sealed up for a while (clothes for a different season, seasonal decorations, books, craft items, etc.). If I suddenly need an item that I didn't think I would, it is easy to find. I just check my list, find out which number box I need, and let my husband know which box to hunt for. It takes a little more time while packing to put a number on a box and write down what is in the box, but it is such a time and energy saver in the end. I hope that your move goes smoothly for you and that you will be making new friends very soon. Rachel

Congratulations, Alexia!!! I'm glad to hear that you and baby are both doing well. Enjoy your new little one! Rachel

Thanks, everyone! Jessica, all things considered, I'm actually doing quite well post-partum. I am very sleepy and am getting weaker and more run down as the days go on, but I'm not totally crashed out like I was expecting to be. I think this is mostly because I had a c-section this time instead of trying to do everything as naturally as possible. Labor and delivery wiped me out with my son. This time I had to have a planned c-section because Adelaide got too big too fast (10 pounds at only 38 weeks!). I have a topic in the dysautonomia forum that tells more about the c-section, recovery, and how it affected things POTS-wise. The topic can be found here: Dysautonomia and Delivering a Baby. Rachel

Sue, Thank you, and thanks for the concern. I definitely don't have diabetes, though. There is a corelation between gestational diabetes and big babies. My sugar levels were tested at every visit, and I had a glucose test at 6 months, which is part of standard prenatal testing. Everything always came back normal. My body just makes big babies! Rachel

Alexia, I hope that everything goes well for you next week with your c-section. When you're up for it after the birth, let us know how things went for you and how you're doing. No rush, though. It took me a few weeks to give an update. I understand the need for rest after having a baby. In case it helps you, I want to share two things that helped me POTS-wise during recovery: - Abdominal compression. I don't know if you pool in your abdomen or not, but I know that I do. The pooling was extra painful after surgery. I found that wearing light abdominal compression was very helpful at keeping my pain level down. I couldn't wear compression for a day or two after surgery. Then I wore light compression. After about two weeks I was back up to my heavy abdominal compression. It definitely made things more comfortable. - Taking it EASY after surgery. The doctors and nurses will tell you to take it easy, but unless they realize how POTS affects your energy level, they'll likely ask you to do more than you really should. My nurses wanted me to walk up and down the hallway four times a day. That was more than I could physically do on a good day without having surgery. I knew I couldn't do that, and so I didn't even try. However, I did walk around my hospital room. I thought I was taking it easy enough, but I should have done half the walking I did. My pain levels increased a LOT and for a day or so pain meds didn't help at all. I had overdone it. It is important to get up and move as soon as possible to help promote healing. Just be careful to not do too much. All the best to you! Rachel

I'm a little late bringing an official announcement and pictures, but better late than never. Here is our new little girl, Adelaide. William is one very proud big brother. He absolutely adores his baby sister, and he is a good little helper for us. One Week Old Two Weeks Old Adelaide isn't always sleeping as peacefully as you see in these pictures. We've had quite a few nights when Adelaide was awake and cranky and/or crying until 2, 3, or 4am. Those make for some very difficult nights. I am so glad that Adelaide was born during Will's Christmas break from school. He doesn't have a job other than going to school, so I have his help full time until the spring semester starts at the end of January. Adelaide's birth was perfect timing! It's tough having a newborn again, but I've got a great support system with my husband, family, and friends. We'll make it through these tough days. This little girl is so worth it. Rachel

Thanks, y'all. Adelaide ended up being just over 10 pounds when she was born. So she wasn't as big as we had thought she might be. I probably could have made it through labor delivery and pushed her out on my own (my son was 9 1/2 pounds, and I got him out), but I'm glad I had a ceserean. The recovery has been so much easier. I'm still shocked at how much easier it was with a c-section! I have even been able to nurse my baby this time. I tried breastfeeding with my son, but wasn't able to do much at all. I think my body was just too tired to produce milk. But because I'm not as fatigued this time around, I've been able to produce more milk. We do have to supplement with two, sometimes three, bottles a day, but I am able to do the majority of the feedings. I'll post some pictures and more of the "chit-chatty" stuff over in the chit-chat forum. Rachel

Hi Katherine, It has taken me a while, but I'm back. I have had two deliveries, one vaginal and one cesarean. In my experience, the c-section was easier with my POTS. Labor and delivery is hard work, and it completely exhausted me with my son. I wasn't able to enjoy the infant stage because I was so out of it for a few months. I hardly remember my son as an infant. With my recent c-section I have actually been able to enjoy my baby daughter! I cand sit or lie in bed and enjoy holding her and being with her. With my son I couldn't do that much at all. If I could do my first labor and delivery over again, I would choose an epidural sooner so that I could sleep and rest more during labor. Then I wouldn't have been so tired after giving birth. If you are only worried about the pain in labor and delivery, then you could opt for an epidural at the beginning of labor. Having an epidural during labor and delivery doesn't require as much anesthesia and pain meds as having a c-section would. For some people, it is best if they avoid as many medications as possible. But everyone is different. When the time comes, talk over all of your options and health concerns with your doctor. The two of you can then come up with the best plan for you for delivery. Rachel

Hi DINET Friends, My little girl has arrived! Adelaide was born earlier this month via c-section. Everything went very well, and we have a happy, healthy baby girl. I wasn't planning on having a c-section until two days before Adelaide was born. We were planning to induce labor once I was full term because Adelaide was getting so big, and because I really wanted to avoid a c-section. My body doesn't heal well, and I wanted to avoid surgery if at all possible. But before we could induce, Adelaide got too big. When I was 38 weeks along the ultrasound weight estimate was just shy of 11 pounds. Ultrasounds can be off by a pound either direction, but either way, we were looking at a baby that was going to be 10 pounds or more. After discussing things with my doctor, it was decided that the risks for injury for me and the baby were too great to continue with the plan to induce. I have now given birth to two babies, one naturally, and one via cesarean. The recovery has actually been much easier this time. It is still hard, and I'm still extra tired and sleepy. Caring for an infant (even with a lot of help) is taking its toll on me. BUT - I am doing so much better physically than I thought I would be. After going through labor and delivery with my son I was so completely exhausted. It was really nice to be able to skip labor and the extreme fatigue that came after that. With the c-section the only fatigue I've had has been due to lack of sleep and caring for an infant (and of course the normal fatigue that I always have). I'm still in pain from the surgery, and that will be here for a while. Time will tell how well my body heals from the incisions. For now, I'm just thrilled to not be completely bed bound because of fatigue! For me and my dysautonomia, it turns out that a c-section was the easiest and best way to deliver a baby. Rachel