Rachel

Thanks for keeping us updated! Rachel

There are some brochures on DINET that you can print and use. You can find a link to them on the right hand side of the main DINET page, about halfway down. I'll also include some links here in this reply to make it quick for you. Here is the brochure that you can print yourself: Dysautonomia Brochure There is also a brochure that DINET will mail directly to your doctor: Brochure for Doctors. I believe DYNA also has brochures somewhere on their website (www.dynakids.org) that they send out to those who request them. When I go to a new doctor, not knowing if they have heard about dysautonomia or not, I usually bring an article or two about POTS or dysautonomia that have been written by Dr. Grubb or other dysautonomia specialists. Here are two by Dr. Grubb. Some of the articles I have used in the past are no longer online, at least not at the old web links I have. I need to do some google searching for my articles again sometime. But for now, here are a couple that you might find helpful: Postural Tachycardia Syndrome The Postural Tachycardia Syndrome: A concise Guide to Diagnosis and Management It can also be helpful to bring your old medical records. I hope that your appointment goes well and that the new doctor will be knowledgeable, smart, and willing to learn more about dysautonomia. Rachel

Hi Jonathan, My specialist recently prescribed Octreotide for me. My insurance won't cover it, though, so I haven't tried it. Here is a link to an article abstract of a small study that was done on Octreotide and POTS patients. Use of Octreotide in the Treatment of Refractory Orthostatic Intolerance I hope that you are able to get the treatment that you need. Rachel

Newborns are hard work, but they are so precious! Here's how we have made it work when we had newborns: We had a cradle in our bedroom that the baby slept in. Once the baby was no longer eating throughout the night, he/she was moved across the hall to his/her own bedroom. It was much more convenient to have the baby right there for feedings. When my son was a baby I was able to do 1/3 to 1/2 of the midnight feedings. With my daughter I did about 1/2 of the midnight feedings for the first 3 or 4 weeks, but after that I couldn't do anymore, and my husbad did all of the midnight feedings. We kept all bottle making stuff in our bedroom. The night before we would put the scoops of formula in the bottles, and we would put water in a separate water bottle. When the baby was hungry, we would pour the water into the bottle with the formula powder, stir or gently shake, and it is ready to go. I like this method because you don't have to warm up the bottle at all. It's so quick. We also kept all diaper changing items in a basket in our bedroom, plus extra baby clothes. I think you said that you can't sleep with the baby in your room. But wherever the baby is, that is where you'll want to keep your bottles, burping cloths, diapers, wipes, baby clothes, and anything else you need for midnight feedings and changings. As long as it is in one place, and as close to you as possible, your work in the night will be kept to a minimum. I hope that it goes well for you and that you will have a baby placed with you soon! Rachel

The FDA posted this statement today regarding midodrine: http://www.fda.gov/Drugs/DrugSafety/ucm225444.htm

Hooray for good news! I'm happy for you. Rachel

Firewatcher, according to the article, Shire has changed their position too and will continue to make ProAmatine. "On Friday, Dr. Jeffrey Jonas, Shire?s senior vice president of research and development, said the company had changed its stance and would appeal. ?There is substantial evidence the drug does work,? Dr. Jonas said."

Wahoo!!!! We won! Thank you for sharing this article! It will take me forever to fall asleep tonight because I am so excited!

Thank you for consolidating all of this contact information, Nina. It is very helpful. Good link, Emily. Thanks for sharing that. It has been very frustrating to learn of the FDAs proposal to withdraw midodrine, but I must say that it has really been exciting to seen everyone work so hard together to fight this! In the past week there have been so many facebook statuses and posted links to get the word out about the devastating impact this would have. I even had friends repost the FDA contact info and ask their friends to fight for us too. I think it is so great that such a small number of patients were able to gather up such an army. The FDA had no idea what they were in for. Now I'm just hoping and praying that it works. Rachel

Yeah, Chelsea Theraputics stands to gain a lot from midodrine being off the market. Will and I have been reading up on droxidopa, and though it might work for some of us, but it certainly won't work for all of us. Also, because it crosses the blood/brain barrier, children and pregnant women aren't allowed to take it. I don't know at what point someone is no longer considered a "child" as far as the medication goes, but the woman, Leslie, who my husband talked to at the FDA today said that the teenage girls who get POTS won't be able to take it. We definitely still need midodrine. It is safe both for children and for pregnant women, and it works for a broader range of people. On a brighter note, when my husband talked with Leslie at the FDA today, she said that they have really been overwhelmed with phone calls, emails, and letters about midodrine. They are so overwhelmed that they need to do something fast because they can hardly get any other work done. We've frozen up their website on more than one ocassion due to submitting so many letters online. They had no idea that we could put up such a fight! Or that when we can't, our friends and family will fight on our behalf. Rachel

Thinking of you.... I hope the procedure is going/has gone well.

I seem to be improving. It is very slow, much slower than normal for me, but it's coming. Yesterday I was able to be in my recliner for a total of nearly 4 hours! I also was able to lie on the floor and play a game of Memory with my son, and I had some energy to play with Adelaide too. It was so good to spend some quality time with my children again. I have missed them so much. The improvements I'm making are pretty slow, so we are still going to have a lot of help from my mom over the next copule of weeks. A friend from church is also organizing full time help for me for after my mom leaves. My goal over the next few weeks as I have appointments is to try to figure out what caused this flare up (if a cause can even be found), and get a plan for what treatments and/or tests to do the next time this happens. Rachel

I can't sleep this morning, so I called the FDA and left a message. I received a call back within half an hour. The lady I spoke to, Misu, said that my call would be counted, but that I also needed to submit something in writing. She said the way to do that was with the online comment form at www.regulations.gov. So I went there and submitted my comment, but I'm not sure if she was correct about this being the best way to contact the FDA. Has anyone else been told to use this form? Every time a new way is posted for how to contact the FDA regarding the midodrine issue, I do it. I just wish the FDA would decide how they want us to contact them! I have sent messages to every email address listed in this topic, and through the CDER contact form, but I have yet to get a reply from any of the messages I have sent. Has anyone else not heard back? Rachel

Thank you, Nina. The DYNA Kids link was a very helpful one. I have been confused about just how to contact the FDA since there are so many options! I have contacted them in a couple of different ways, and now I will contact them again. I have many family members and friends who are also contacting the FDA and their congressman. At least we won't go down without a fight!

(((Nina))) Sounds tough. I'll keep you in my thoughts and prayers, especially on Thursday. Rachel

Thank you, everyone. I'm glad I can always count on my DINET friends to help me out. I'm a tiny bit better than yesterday, which is encouraging. I think I was in my recliner for close to three hours today! I haven't had any of the severe brain fog/confusion for a few days now, but I am still very weak, tired, and more faint feeling than normally. I called my local cardiologist yesterday, and she called me back within half an hour (love her!). She has raised my dose of midodrine up to 15mg, which of course is only a temporary solution since the FDA is taking away midodrine. If things don't improve with the higher dose then she will send me to a neurologist. She also said that severe silent migraines are a definitely possibility based on my symptoms. I emailed Beverly yesterday, and she told the office staff, "Get this girl in here within two weeks." So we'll be going to Toledo soon. I can't get in with my mito specialist (also a neurologist) until January, but I'm on the wait list if something becomes available. Christy, I had my vitamin D checked earlier this summer, and everything was good. Unless it can bottom out suddenly, it should still be okay. I'll be going to the doctor soon, though, so we can see about doing more blood work then. Noreen, I haven't been diagnosed with fibromyalgia. I have some friends who have it, and their pain symptoms are much different than my pain symptoms, so it doesn't seem likely. Lissy, I read about cardiomyopathy, but the symptoms don't seem to quite fit. I hate bananas, My medicine hasn't been changed in over 8 months. No simple solution there. Tearose, Thank you for the suggestions to do simple exercises in bed. I started wiggling my toes while reading. Caterpilly, I did get a cold, but it wasn't until after the worst of my confusion and weakness symptoms were gone. Firewatcher, I did have my thyroid checked recently, but it has been a very long time since I was tested for mono. Sleep depriviation is a possibility. I haven't been sleeping as well for the past three weeks. It could certainly have made things worse, but I don't think it would have made things as bad as they were/are. I'm doing worse now than I was with a newborn 9 months ago, when I was doing half of the midnight feedings and getting even less sleep. And, actually, now that I think about it, my sleep schedule didn't change all that much in the past month. My husband usually stays home at least three mornings a week so that I can sleep in until noon. This semester (started two weeks ago), he has class at 11 or 11:30 most mornings, so I had to get up a little earlier. I still slept in until 10 or 11 most days, and on a couple of mornings our neighbors watched our children for me. Katherine, I weaned Adelaide 7 months ago (my body didn't last long for breastfeeding). You may be right that it is just a bad flare. I may have pushed it too hard all summer and then my body just finally said, "I quit! Go to bed!" Jana, I will definitely be going to my neurologist as soon as I can. He's awesome, though, which means I have to wait a while! Sarah, I hope that you can get an official diagnose soon and find the answers that you need. Thank you again, everyone for your help, advice, hugs, thoughts, and prayers! Rachel

For a couple of weeks now I have really been struggling with my health. At first it was just extra weakness and fatigue. As that grew worse, really bad brain fog began to set in as well. Everything continued to get worse, and the brain fog turned into periods of confusion. I had difficulty communicating and didn?t understand things well. I have been extremely sensitive to sights and sounds (even more so than usual), and the weakness and fatigue has grown super intense. Usually with rest this will go away. But instead it kept growing worse. Our neighbors had to watch our children on several days while my husband was gone. Finally, I had to call my mom to come. I?m now in bed 20-22 hours a day. I get up when I can, but my body is so weak and my head so sensitive to sounds that within an hour of being in my recliner I have to go lie down in bed again. I can only hold my daughter in my lap for five minutes. I can barely read one easy book to my son. Even when I am lying down it feels like the perfusion of blood in my brain is not what it should be. While lying down I have felt like I am on the verge of fainting. I have been freezing cold for hours at a time. When I go to sit down I often fall the last few inches because my muscles just absolutely give out on me. A lot of my symptoms seem to fit with a very severe silent migraine. Or it could be something more serious. We just don?t know. All I do know is that this is not normal for me, even for a POTS hole. It is normal for me to always be weak and tired and brain fogged, but the intensity has at least quadrupled, and it is not getting much better with rest. It has gotten a little better, but the improvement has now stopped. This is so weird. I feel like I?ve been picked up and dropped in someone else?s body. Something is really messed up, and I don?t know what to do. I am contacting my team of doctors, but if anyone has and suggestions for what to do, what tests to request, or for what might be going on, please let me know. We need help.

Hi Elizabeth, Chest pain isn't necessarily normal for POTS. Mild or ocassional bad chest pain can be, but excruciating chest pain that doesn't go away isn't normal. Sustained, excruciating chest pain is not something I've heard many people with POTS say they have. If the pain is severe, then it is something you want to get checked out to make sure you don't have another problem going on too. This severe of chest pain may be normal for you, but just in case I would want to get it checked out. I'd mention it to the doctors at Mayo and describe the pain in detail. I hope they will be able to help you. I take ginger for nausea. I can't stand the taste of ginger (in tea or food), so I take ginger root capsules. I buy them at drugstore.com, but you can probably get them at Wal-Mart or any place that has a large enough selection of natural herbs, vitamins, etc. Rachel

I didn't wean off of any medications prior to becoming pregnant. When I found out I was pregnant (I can always tell within 24 hours of conception) I immediately stopped two of my meds (amitiza and melatonin) and replaced them with ones that are safer during pregnancy. Throughout my last pregnancy, I took midodrine, cerefolin, claritin, unisom, miralax and prilosec. I also continued salt, lots of fluids, gatorade, and compression. This was all under the supervision of my OB/GYN. Because of my poor circulation, I believe it was actually safer for the baby for me to take midodrine during pregnancy. Without midodrine I have a lot of blood pooling in my abdomen and legs. When that much pools there may not be adequate blood flow and oxygen to the baby. I have had several miscarriages in the past (when I was not on midodrine or wearing compression), and the high risk OB I consulted with said that it was very plausible that the babies died due to lack of proper blood flow and oxygen. Nothing can be proved at this point, though. I don't say this to scare you, just to let you know that it can be important to take medication during pregnancy. You might want to go see an OB/GYN, or even a high risk OB/GYN, to discuss your medications and what would be safe to take while pregnant/trying to become pregnant. I hope that everything goes well for you. Rachel P.S. At 39 weeks I delivered a healthy, happy, 10lb baby girl.

Yay! I'm glad it went through for you. Breathe a sigh of relief. Whew! A battle won. I remember feeling so validated when my SSDI case was approved. Finally, someone officially agreed with me that no, I could not work. Congratulations on your approval. Rachel

Dear Nina, You will be in my thoughts and prayers, especially as you await the results of your upcoming tests. Rachel

Dear BellaMia, I'm sorry that life has been so tough lately. I will pray for you today. I hope that yesterday was a good time of sharing both tears of grief and special memories of your mother. Take your time in figuring out the new forum. Hugs, Rachel

You describe the feeling well. I often say that I am "wilting." When I am "wilting" I slump farther down in my wheelchair. I lean on the wheelchair arm rests, a table, or whatever is next to me (sometimes just doubling over onto my lap!). The sparkle goes out of my eyes. I get more brain fog. I try to sit up straight, but just can't keep it up. I feel like a flower that has wilted in the summer heat. I'm droopy, gravity is pulling me down, and I'm no longer strong enough to fight it. It isn't fatigue like a healthy person might experience at the end of a hard day or the end of a workout. With that kind of fatigue one might feel tired, but can keep pusing through. When I "wilt" the only thing that helps is lying down to recover. There is no pushing through. If you are talking to a healthy person and saying that you are fatigued, then I think they could easily get the wrong idea. When I think back to my healthier days, there really is nothing similar to what I feel now when I have that "I have to lie down right now" feeling. The only way to help them understand is to explain it. Rachel