lalalisa

My Brother has a port but doesn't have POTS. I just thought I'd chime in to say that it's been a lifesaver for him as far as getting fluids (he has cyclical vomiting syndrome) and meds. It's never gotten infected which is good and he's had it for probably 4 years now. I do remember him being in more pain than he expected after the surgery - but in the end it was worth it. Blessings on your surgery! I wish I could help with your questions, Lisa

Hello, I was diagnosed with POTS about 7 years ago and waited until just this year to have a child (I am 30). I am SO glad we decided to have a baby. My husband and I had waited and waited hoping that I would improve enough to have children. I had some improvements but I'm still disabled but we took this step of faith anyways. My pregnancy was smooth and we had a healthy little girl this year. I had a really hard recovery but am doing fairly well now (at least back to where I was before pregnancy). I am SO glad to be a mom - even on the days when I feel terrible I wouldn't change a thing as far as our decision. Blessings, Lisa

Hello, You may just need to give them a try to see how you respond. For myself I can't take Zoloft because it makes me anxious but Paxil works well. I know the controlled release type of Paxil may help with the potential weight gain. I haven't gained a pd. from it but I know any SSRI's can potentially cause this... Either med you decide on I would recommend going on it slowly. Even paxil which works well for me has an adjustment period and I have to titrate up slowly by cutting the pills in 3rd's over and increasing over the course of a few months. Let us know how it goes. Blessings, Lisa

Hello, I tried Zoloft recently but it didn't work well for me. I think it's wise to start on a tiny dose. Whenever I try a new SSRI I cut mine in 3rd's or 4th's (whatever works with the pill)....amazingly I often still react poorly but thankfully it's not nearly as bad with a full amount of medicine. I've found great help from Paxil but it does take me about 2 months to SLOWLY titrate up to a full dose (i get some dizziness that eventually goes away). I know it's extremely hard but once you find the right SSRI for you they really can help. Everyone is so different and I've heard that Zoloft definitely helps some! Let us know how things go if you try it. Blessings, Lisa

Hello, Just in the past 2 weeks I've developed high blood pressure. For the past 7 years a normal blood pressure for me while standing is about 90/50 and the past week or so it's been 150/90!! I'm seeing my dr. this week for bloodwork, etc but just wanted to know if anyone else has gone through such a drastic change!? I'm a little scared/nervous considering it's almost double my normal.... Thanks, Lisa

Hello, I've heard from a few moms with POTS that when they stopped breastfeeding they experienced a major POTS crash. For those of you who have breastfed with POTS can you share with me your experiences when you stopped. My daughter is almost 7 months and I'm hoping to wean her around 12 months. I'm a bit nervous as I've actually seen an improvement of some of my symptoms with nursing. Blessings! Lisa

Hello, I've had a good experience with Paxil CR. I've tried many others but they actually make me so anxious that I have had to take xanax until the side effects wore off...just crazy. I have to cut the lowest dose into 4th's because I'm SO sensitive and slowly work up. Once i'm on the 25mg I feel like myself and the anxiety surges go away. I'm currently on it for postpartum depression and it's helping quite a bit. Hope you find something that helps! Lisa

Hello, I found this interesting because 4 months ago while in the hospital after having a C Section I experienced the jerking awake. My body would jerk awake every time I fell asleep...it was horrible! It went on for about 5 days and slowly got better. The frustrating part is that the less sleep you get the more it seems to happen so it's a vicious cycle. I find it interesting that you live on a boat! Take care, Lisa

Hello, I wanted to let you know that our daughter arrived safely on April 24th. She wasn't responding well to contractions so I ended up having a C Section. To see pictures and read more about my delivery you can visit my blog..... http://surehope.wordpress.com/ I've been having intense shortness of breath and chest pressure ever since my C Section. It seems to get worse when I eat or when I get up to move around. Has anyone else experienced this after surgery or labor and delivery? Thankfully a blood clot in my lungs has been ruled out through a Cat scan. It's really disturbing and hard not to be fearful when I feel this way. Any input? Lisa

Congratulations !! I'm excited for you!! When I found out I was pregnant I found a high risk OB who I felt confident with. (I went to one and just didn't feel confident with her so I went to another and love her) She doesn't necessarily have experience with POTS but I would guess that any high risk OB would have experience with various symptoms of POTS such as tachycardia and low blood pressure. (mine does and has been really helpful) I am 37 weeks pregnant right now and anticipating labor/delivery/recovery/breastfeeding as a POTS patient. There are lots of questions and unknowns concerning the weeks ahead but I'm just trying to take things in stride. I hope you find a great dr. who helps you feel confident about the days/weeks ahead. Blessings! Lisa

Interesting! I'm currently off of my Midodrine (I'm in my 3rd trimester of pregnancy and don't need it with all of the extra blood volume) but when I go back on it I'll pay attention to this symptom. I am one of those with chronic sinusitis and haven't noticed Midodrine helping in the past but will be paying attention to this. Take care, Lisa

Hello, My brain fog has gotten some better over time. I couldn't read for the first 3 years with this illness. At that point things were going really bad and Dr. Grubb prescribed exercise....he basically said it wasn't an option. I hesitantly started swimming and after just doing a little I would come home crying and just crash (the fog was even worse then). BUT, slowly but surely I was able to tolerate exercising better and then slowly a few improvements happened. 1. My muscles shook a lot less (the previous tremulousness got lots better) 2. When I exerted myself for anything I didn't crash nearly as hard. 3. My brain fog improved. (I still have difficult times and if I don't get enough sleep/rest it comes back but overall I am reading regularly and have seen great improvement here) I still struggle daily and cannot even work but the improvements I've seen after forcing myself to exercise are way worth the output of energy. It also makes me feel good as far as good endorphins. Hope things improve for you! Lisa

Hello, I wanted to let you know that with good hydration, lying down for the entire test, and some Midodrine I made it through the 2nd 1 hour glucose test without passing out or having any weird episodes. The great news is that this time I also passed so all of my stressing about having Gestational Diabetes was in vain. It does look like this was something that could easily happen to a POTS patient for future reference. Thanks! Lisa

Hello, Thanks for your responses. It looks like I'm going to have to try the 1 hour glucose test again tomorrow. If the same thing happens I'll probably just be treated as a gestational diabetic (I will definitely be asking my dr. if there's any other way to check my glucose levels though) Thanks again, Lisa

Thanks for the update. We're looking forward to hearing how you're doing and how things have gone for you Ernie. Take care, Lisa

Hello, I had my glucose screening test this week that they give you during pregnancy to see if you need further testing for gestational diabetes. Well, After drinking the glucose drink they give you I proceeded to sit in the exam room at my dr's office. I started feeling lightheaded/nauseous and decided to lie down on the exam table. I quickly realized that there was a good chance I might pass out so I carefully got down on the floor and started crawling out into the hallway to flag down a nurse or someone who could help (I didn't want to pass out alone in an exam room). Thankfully a kind nurse saw me and began assisting me bringing cold rags for my forehead and eventually brought the dr. in. After lying on my side (the best position for blood flow when pregnant) I slowly began to regain my vision and my blood pressure began to readjust. They came to take my blood 15 minutes later and low and behold I failed my glucose test. The good news is that the dr. thinks my sugar is high because of the stressful event that happened just before drawing my blood. Have any of you had experience with passing out and this altering your blood levels - in particular sugar levels? My family dr. tried to explain why I probably passed out to me yesterday. He mentioned something about Osmotic Mediated Syncope and although I don't understand it all it sound like an interesting topic to study with POTS patients, digestion and syncope. All this to say I am wondering if anyone else has had a similar experience? Thanks, Lisa

Katherine, I also just saw this thread and wanted to say that i'm so sorry to hear of your sister's loss. I can't imagine what you are all going through right now and will pray for you tonight. Thanks for sharing so we can be here for you... Love, Lisa

Dear Ami, Happy Birthday!! I'm so glad you're part of the forum....I always appreciate your posts and you are always making us smile. =) Hope your birthday is great!! Lisa

Suzy, I'm so sorry to hear about your rough time with fainting in the grocery store and then the horrible experience at the hospital. I just wanted to chime in because i'm here to listen and just want you to know you're not alone. I'm so sad to hear that they treated you so poorly when you should be getting TLC and good care in your time of need. I hope some others will be able to help answer your questions... Take care and keep persevering. Lisa

Amy, Welcome back to the forum and most of all back home. I'm so happy for you that you're home now. It sounds like you've been through a tremendous amount lately and I will be praying for you. Love and Blessings, Lisa

Kits, Thanks for your open, honest and hilarious post. You really gave me a laugh today! I wanted to just chime in and say that love, healthy marriages and children are all possible. It's so worth it. I did get married a few months before getting sick but truly believe that I would've married the same man even if I had been sick. He's been so patient and caring and it's totally worth the stresses that relationships add. Also, I'm 27 weeks pregnant with our first child. We waited 6 years into marriage and despite the fact that my health isn't improving decided to take this step of faith. I know we will have a different family life than most but look forward to the simple life we are going to have and the love we have to share. Please don't view yourself as a sick person who's sickness is going to scare away guys. The ones you wouldn't want to be in a relationship with may not stick around but the quality ones will stick around because of who you are. I'm sure you are a wonderful person with tons to offer. Thanks for making me laugh and again for your transparency. Lisa p.s. I also meant to add that I've stayed on Midodrine throughout my pregnancy. My dr. thinks it's much better for the baby than to have me passing out. I did go off of Paxil but that was my preference....my dr. would've been ok with me staying on certain SSRI's. You really just have to take it one medicine at a time and determine what's best....

Hello, Thanks so much for the great input and encouragement. I feel better just hearing your experiences and it sounds like they're mostly positive. Jennifer, thanks so much for the helpful articles! (the only one I couldn't open was the first one) It's great having these for my dr's. Thanks again, Lisa

Hello, I am 27 weeks pregnant now (with our little girl) and my dr. thinks that having an epidural during labor and delivery is going to be the best for my body. She thinks it'll be easier on my heart and allow me to work less during the process. I do have some concerns...mainly wondering if any of you have had one and how your body reacted. Were you glad you had one? I know they can lower bp so my OB is planning to administer it very slowly and steadily making sure to not give me too much medicine or all at once. Any thoughts or experiences? Thanks! Lisa

Hello, I am sitting here tonight and noticing (not for the first time) that my "pinky" fingers are both freezing to the touch and meanwhile my thumbs and 2nd and 3rd fingers are fine and warm. Do any of you experience this as well? Also....Does anyone have any recommendations for some really warm good quality socks? My feet are SO icy cold, they hurt. Thanks! Lisa

Melissa, I'm so glad to hear that you're headed home and will be praying for you!! Love and Blessings, Lisa