Rachel

I used to have headaches every day before diagnosis. Once I learned that I need a LOT of fluids I started drinking more. As long as I push fluids and keep up with taking my midodrine I don't get the daily headaches. If you aren't drinking a lot of fluids, this may help you. I still get occasional bad headaches and migraines, but the daily headaches I had are helped greatly by pushing fluids. I hope you can find something that helps you. Rachel

I'm sorry you are having such a rough time with allergies. This is the first year I ever had problems with seasonal allergies. I'm not sure if it is because I'm pregnant or if it is because we have moved to an area that is one of the worst places in the country to live if you have seasonal allergies. My husband also has allergies, but his are worse than mine. He's had them ever since he was a child. Other than allergies and asthma, he is very healthy. My son, three years old, also has allergies now. Otherwise he is also very healthy. Allergies affect everyone differently. I don't know if dysautonomia may make it worse for some or not. That doesn't seem to be the case in our family, though. It's the healthy ones (my husband and son) who have the worst allergies. Rachel

I'd suggest elevating his feet quite a bit. When things get that bad for me, my doctor said she wants me not just in bed, but in bed with my feet elevated. I hope Dr. Rowe calls you back soon, and I hope this passes soon for Mack. Rachel

Thanks for letting us know. The newsletter looks great! I like the new format. Rachel

Maybe something like Miralax would be easier and more gentle on your body. I have tried Senakot in the past, but my body can't take it. Senakot has too much fiber, and it makes my gastroparesis significantly worse. It is also too hard on my intestines. I used to be on Amitiza, and that worked fairly well. It works neurologically to make your intestines move. I'm not on Amitiza currently because I'm pregnant, and Amitiza crosses the blood/brain barrier - not good for a baby. Currently Miralax is working well for me. Rachel

Good news! Glad to hear. Rachel

Midodrine (brand name ProAmatine) has a side effect of a tingly scalp. If you are on this med, that could be the culprit. It could also just be a quirk. I sometimes get a feeling, usually on my arms or legs, of a bug crawling on me or water running down. Nothing is actually there, though. Just my nervous system playing tricks on me. Rachel

I have experienced something very similar. It happens occasionally, but I don't know why. I haven't noticed it happening after a day of what is more physical labor than normal for me. It is the worst if I take Benadryl before going to bed. I don't take Benadryl at all anymore. Rachel

I was born full-term. Apgar score: 10. Rachel

My original post in this topic is from two years ago. I need to now clarify and add that in the past few months I've heard some very conflicting reviews of the Cardiac Disease Specialists. Some patients have said that the doctors know about POTS and are willing to treat it. Others have said that they didn't receive any help with treatment. I haven't been in a very long time, so I don't know what it is like there at CDS anymore. Everyone I've heard from says something totally different than the person before. It may be a great experience, a bad experience, or somewhere in between. Rachel

I'm so sorry, Marni. My heart breaks for you. You're right, marriage is supposed to be for better for worse, in sickness and in health. I'm sorry that your husband didn't keep these vows he made. You've been in my thoughts. Rachel

I'm so, so very sorry that this has happened to you. You have been in my thoughts. Rachel

We found out that we're having a girl! William kept saying that he was going to have a little sister, and he was right! I'm now crocheting baby bonnets and baby booties. Gives me something fun to do during all of that recliner time.

I'm glad to hear that your son is seeing some improvements. I hope you can bring him home soon. Rachel

I'm sorry you are crashed. That's tough, especially when you are a mom with a young child. A toddler adds a whole new challenge physically. Even if you have a lot of help at home, it is still a challenge, and it takes a toll on your body. I was really crashed out for the first 4 months after my son was born. I remember "waking up" 4 months after giving birth and feeling like I was coming out of a daze. I felt like I had missed the whole infant stage of my son's life! I was so absolutely exhasuted in a way that no healthy new mom can even understand. At 4 months I finally started feeling a little more like myself. It wasn't until my son was 2 years old, though, that I felt like I was back to baseline from where I was pre-pregnancy. I'm not saying that to try to discourage you, just to show what a toll caring for a young child puts on us. And I had a LOT of help in those first couple of years! The lack of sleep is hard on us. All of the up and down and going back and forth in the house is absolutely exhausting. When you have an 11 month old it feels like you are constantly doing something for your child - diaper changes, feedings, snacks, nap-times, etc. Standing up and sitting down and walking back and forth all day is exhausting, even if you do take naps every time your child does. It's no wonder you're crashing! Do what you can to get the rest that you need. Do you have anyone who can help you care for your baby? Help with meals? Come over for a while just so you can sleep? If you're crashing, you need help. Don't be afraid to speak up and ask for it (easier said than done, I know). The other thing I think of in reading your post is depression. You mentioned feeling irritable, depressed, and feeling like something bad is going to happen. Could you have a delayed Post Partum Depression? Or Post Lactation Depression? These are real conditions, and a doctor can help you a lot with this. If these feelings of irritability, depression, and anxiety don't go away after two weeks, then it is time to speak with a doctor. Let him/her know what you're feeling. Your doctor will know if it is normal for someone who is dealing with a chronic illness or if it is something out of the ordinary that would fall under the category of Post Partum Depression or Post Lactation Depression. I hope very much that you can get the rest and the help that you need. Hang in there. The baby/toddler years don't last forever. It will get easier. Meanwhile, get all the rest you can, and enjoy special times with your baby while lying down. Big hugs, Rachel

I don't think it does for me. I feel my best if I get a good 10 hours of sleep at night. Some days I'll sleep for 12 hours at night. Waking up will take a little longer and be harder if I sleep for 12 hours, but it doesn't make me feel worse for the rest of the day. I have more strength and energy the more sleep I get. Rachel

My symptoms are usually predictable. As long as I sleep well and pace myself well, I can almost always predict what the day or week will be like for me physically. I will crash if I ever overdo it, if I haven't gotten enough sleep, if there have been too many noises, it is too warm, etc. Even those crashes are predictable, though, in that I know pushing it is going to cost me, what the lace of sleep will likely cost me, etc. Occasionally I do have unpredictable crashes or a long-term worsening in symptoms. But in general, now that I have learned how to pace myself and notice the subtle hints from my body to slow down, my daily symptoms are not unpredictable. Rachel

I'm so sorry. You and your son will be in my thoughts and prayers. Rachel

I do have to adjust my abdominal compression sometimes when I'm sitting. Wearing the compression daily took some getting used to, but it helps so much that it is worth it. I don't get as nauseated and light headed while sitting with compression on, so in a way it is actually more comfortable for me to have it on. Sometimes when my gastroparesis is flared up I can't wear the compression. On days like that I just wear it as long as I can (if I can), and then take it off when it gets uncomfortable. Maybe if you get some abdominal compression now you can wear it around the house and get used to it before you have to wear it for a long plane ride. I hope it works for you. Rachel

I use ginger root tablets and peppermint tea to help control my nausea. I don't have a huge problem with nausea, so these remedies work well for me. Rachel

Very interesting. Thanks for sharing. Definitely let us know if your son notices any improvement while on the antibiotic. Rachel

Here are some links I have found helpful: Americans with Disabilities Act - Common Questions about Service Animals Assistance Dog Tasks

I don't have a service dog, though I have considered it. A service dog can be trained to "catch" you if you fall or faint! That would be so helpful for many of us! It would be great to have a dog who could pick up things I drop, get the phone for me, etc. It is amazing what a well trained service dog can do. I haven't read up that much on the rules for service dogs, but it is my understanding that you can train one yourself. You don't have to go through an official agency. Technically, though, a service dog cannot be a pet. A service dog is a service dog, not just a fun companion. It is very difficult to train a dog to perform some of the tasks that we would need in a service dog. Training a dog and taking care of a dog is a lot of work. While it would be cheaper to buy and train a dog yourself, it would also prove to be a more difficult task than most of us could do. I'd really like to hear about what you learn as you research this. Rachel

I wear 30-40 compression. I have tried 20-30, but it wasn't beneficial at all for me. I usually wear knee highs because they are easier to put on. I purchase my compression hose on Ames Walker. They are much cheaper there than in a medical supply store (sometimes half the cost). Plus, you don't have to bother with getting a prescription. The Jobst and Sigvaris brands are my favorites. In addition to the knee highs, I wear either Spanks Mid-Thigh Shapers, or the "Work-It" shapers that Firewatcher mentioned. I have a lot of pooling in my abdomen, and I tried waist high 30-40 compression hose. The problem was that they were too tight up around my tummy. The Spanks and other shapers are not as tight as the 30-40 compression hose are in the waist. It took a lot of trial and error before I found the styles, brands, and compression strength that works the best for me. We're all different. I hope you can find what works for you. Rachel

Hi Dani, I'm a little late chiming in on this, but I did want to offer my congratulations. A baby is a precious gift. I hope that things go well for you, and that you can feel well enough soon to enjoy your pregnancy. I'm sorry you've been feeling so badly, and I hope it improves for you soon. I have been pregnant with POTS. I had a very successful, healthy pregnancy with my son (now 3 years old). I felt better immediately and was able to go off of all my meds. I especially felt good come 4 months along when there was such an increase in blood volume. I am currently pregnant (20 weeks along), but this pregnancy has not been as easy as the one with my son. I was much more fatigued in the first trimester. Now that I'm 4 1/2 months along I am able to sit and stand for longer periods. I love the increase in blood volume!!! Hang on, you'll get there. As I said, with my son I was able to go off of meds. That was not remotely possible with this pregnancy. You can see in my signature which meds I am on during pregnancy. My cardiologist, my OB, and my high-risk OB approved all of these meds. I did try going off of Midodrine a couple of weeks ago, but it was bad. I definitely still need that, so I'll be staying on it. The other thing that helps me a lot is compression hose. I'm still wearing those daily, although my tummy will be too big for the waist high in another 3 or 4 weeks. I didn't have the reaction you described with prenatal vitamins. There are definitely some that are harder or easier on my tummy, but they never caused dizziness. I found two over the counter prenatal vitamins that were good and easy on my tummy. Some brands are better than others. I hope you can find one that works for you. Maybe your doctor will have a suggestion. My blood pressure didn't drop at all in my second or third trimester. In fact, it went up a tiny bit. It was great to have a more stable bp. I think the increase in blood volume helped with this. When I gave birth to my son, nothing different had to be done for me than they would do for a normal, healthy mom. I tried to go all natural because I wasn't sure what pain meds or an epidural would do. Eventually, though, I had to have an epidural because I desperately needed sleep. It was either have an epidural and get some sleep, or be completely useless once it came time for delivery and have to have a C-section. My body heals very slowly, and I knew that a C-section would not be a good option unless absolutely necessary. So I opted for the epidural. I did just fine with the epidural. It didn't drop my bp at all. Oh, one other thing about delivery. I did have to be given pitocin. My uterus didn't contract very well on its own. The pitocin helped tremendously. This time around, I will get the pitocin and epidural much sooner. That way I'll be able to rest during labor and not be so exhausted come delivery time. I hope that your first trimester passes quickly for you, and that better things await in your second trimester! Keep us posted with how you're doing. All the best, Rachel