Rachel

Oh Tennille, what an ordeal! I'm sorry you had to go through that. I hope that you recover soon. I have had the same experience as you and Sue with the white resin fillings. They aren't very comfortable. My dentist told me that some people have more trouble with tooth sensitivity and the resin fillings. A few years ago I had a resin filling replaced with a silver filling because the resin one was too uncomfortable. I just had several fillings done last week, and I opted for the resin fillings this time since they are supposed to be better. It hurts to chew now, though, and my teeth are much more sensitive to cold and hot foods now. I'm hoping that in time it will go away. My dentist said it can take 6 months or more.

Thanks, Brye! I'm looking forward to living in the north again. I really miss winter! Houswoea, The twin cities will be a little far away for me for a regular doctor. Although if I can't find a dysautonomia doctor who is closer I will have to consider the twin cities. I'm hoping to find one in Sioux Falls, SD since that would be a closer drive for me in southwest MN. I am hoping to go to Mayo while I'm there. I'd really like to get a firm answer on mitochondrial disease if at all possible.

One thing to keep in mind is that Google uses algorithms to know what your interests are. Based on this google knows what sites you visit and what topics interest you. If you frequently come to DINET using your home computer then it is more likely that you will find yourself on a google search. However, if you go to a computer at a library and aren't logged into your google account then results like a profile page on DINET won't be as likely to show up. I was recently watching a video where someone was explaining this at a conference. He tested this with two of his friends. He had them google the same word, but from their personal computers. They both received very different search results based on sites and interests they had in the past. But we do still all need to be careful. This is the internet, and what goes on the internet stays there forever. We even need to be careful on facebook or other sites where you have your privacy settings strictly monitored. All it takes is one friend's account being hacked and then your personal information is available to the one who hacked the friend. I'm glad you're all here, but do be careful and use common internet safety practices.

Jen, wow, that is a big sticker shock! Yikes! I hope that you are able to get it all sorted out with as little stress as possible. Issie, thanks for all of that helpful information. I am hoping to go to Mayo sometime in the near future, and that gives me a good idea of what to expect and how to prepare insurance wise. Rachel

That means that someone is coming on and voting in all of the polls. Once someone votes in a poll it gets pushed up to the top of the forum even if a new reply isn't posted. There have also been a lot of new polls created recently. You'll notice that most of the polls on the front page were created in February or March of 2012. Because there are so many new polls a lot of members haven't voted in them yet.

Thanks, Kayla. I'm hoping I can find someone too! I have had such wonderful doctors in the past few years, and I'm hoping I can find a great team again. I guess we don't have many (or any!) members from southwest Minnesota. I'll have to join the Meet Others program and see if anyone is on there for MN. Rachel

I am going to be moving to southwest Minnesota in April. I'm excited about the move and the opportunities for us there, but I dread searching for a new team of doctors again. Does anyone have a suggestion for a good doctor in southwest Minnesota? I'll be looking for a PCP as well as any doctor that knows about and treats dysautonomia. It could be a cardiologist, neurologist, or an internal med doctor. I'm not too picky about that as long as they are very familiar with dysautonomia. We will be in southwest Minnesota, and I'd like to find a doctor within a 2 hour drive if possible. I'd be willing to travel to northwest Iowa or to Sioux Falls, South Dakota. There are specialists farther out, and I hope to go to Mayo eventually, but for regular care I'd really like to find doctors close to me. If you have any suggestions, please let me know! If you aren't comfortable posting the information on the forum you can send me a PM. Rachel

Hi Claire, I'm sorry. It must be so hard being stuck indoors all the time. You have had such a difficult 15 months. Congratulations on the SSDI approval. That's great that it went through so quickly! I'm sorry you need it, but I'm glad that help is there for you. I hope that you'll be able to find the in-home help that you need while waiting for your parents to relocate. That's good that you are still trying to keep your hands and your mind busy. I hope that in time you will see small steps of improvement from doing these activities. Best wishes for better days, Rachel

I'm sorry the day before had to be so miserable. I hope that the test will reveal accurate results for you and that the misery wasn't in vain! I hope your doctor will be able to offer you some helpful treatments. Rachel

I'm glad that your review went well and that you will be able to keep your Social Security. I don't think you'll ever be able to have it without any reviews at all. From what I remember they review at least every 7 years, even if your disability is permanent.

I like the Women's One multivitamin by Rainbow Light. It is free of artificial ingredients, dyes, and preservatives. I think it does have soy in it, however, so that wouldn't work for you. I usually buy my vitamins on Amazon.com because it keeps me from having to take a trip to the health food store. When I look for a new vitamin or supplement I usually look on drugstore.com. You can read the full labels there, making it much easier to find one that doesn't contain anything you are allergic to. I hope you can find a vitamin that works for you. Rachel

We managed okay here in our area of Atlanta. There were some tornadoes around us, but none in our particular town. Although I hear there could be more on their way later tonight. My husband was at work 2 hours ago when the storms came through, so I had to get the children out of bed by myself. It was tiring, but we decided to have fun. We had a pajama party in my closet, complete with popcorn and Sesame Street! Adelaide especially thought it was great! William was aware of the danger, but it was just a party for Adelaide. I hope the rest of you are doing well tonight and staying safe from the danger. This was a huge storm!

This happens to me when I am really tired. I will breathe out and then just not breathe back in. I don't even realize it for a couple of seconds until my brain kicks in and reminds me to breathe.

My resting heart rate is usually in the 50s. It's funny because 17 years ago my resting heart rate was never below 100; it was usually 120. That was back when I was still a year-round swimmer and was in excellent physical condition (according to any test on my heart and lungs). Now as my health has declined over the years my heart rate has gone down as well.

I'm so sorry that you're going to be without internet. We'll miss you. I hope that you will get the help and treatment that you need. You'll be in my thoughts! Please check in as you're able. Rachel

Ugh. You can talk with someone in the office to see if they can offer you a discount. Some places will do this for patients who don't have insurance. I don't know if they will do it for someone who has insurance but is out of network. It can't hurt to ask. You can also check to see if they offer any financial aid programs. If not that, you can ask about working out a payment plan so that you don't have to pay the whole $2000 at once.

Agreed! This is such a valuable place. I first found DINET in 2004, and it was a lifesaver for me! At that point in time I had already had POTS for 10 years, but it suddenly became very severe. At that time I was living in the middle of nowhere in Alaska and didn't know what to do. The information on the website and the support on the forum was so valuable. It has continued to be a help for me over the years, and I have made some very close friends through DINET. I like DINET so much, and that is why I volunteer here. This forum and website is a valuable resource, and I want to see it continue on for a long, long time. Thank you to everyone who participates here and helps to make DINET such a great place! Rachel

I'm so glad to hear that you are doing a little better and that your florinef dose was lowered. I prayed for you a lot last night and today! I hope that you'll be able to get into Vanderbilt soon and get the answers and help that you need. Please keep us posted. Rachel

I'm so sorry about what you are going through right now. I will be praying for you tonight. I'm not a doctor, but I would be very concerned about taking 0.6mg of florinef. From what I understand 0.2 is the max dose. http://www.rxlist.com/florinef-drug/indications-dosage.htm I hope you'll be feeling better soon. Hugs, Rachel

We do want to keep all dysautonomia discussions in one forum. This is something that is fairly unique to DINET, and I believe it is beneficial. When too many sub-forums are added it becomes cumbersome to keep switching between forums, especially for moderators who read every topic every day. The best way to organize research articles on the forum would be to begin using the tag feature on topics. If everyone who posts a research article puts a tag under the post that says, "research article," then they can all be brought up together. You can click on a tag underneath a topic, and it will bring up a list of all topics that have been tagged with that word or phrase. This is a new feature in the upgraded forum, and it could be really helpful if we all use it. There are a few places where DINET does have research articles gathered. There is a research page on DINET, found here: http://www.dinet.org/research.htm It hasn't been maintained in the past two years because of lack of volunteers, but we hope to get that back up and running soon. A few relevant research articles are published quarterly in the newsletter, and you can find those here: http://www.dinet.org/newsletter.htm Personally, I find it helpful to save research articles that interest me into a dysautonomia folder on my computer. I also sometimes save links in an internet folder. I even started a dysautonomia pinboard on Pinterest to collect articles and pictures relevant to dysautonomia (some fun, some serious). I'm sorry we can't add another forum here, but we appreciate your feedback. Rachel

When I have a long car trip I usually sit in the front, recline my chair, and put my feet up on the dashboard. It isn't a very safe way to ride, but it's the only way I can go anywhere in the car, even around town. I can't sit for more than 10 or 15 minutes with my feet down on the floor. If I am feeling particularly bad I lie down on the back bench in the van. Wearing compression and drinking fluids helps. I also bring along pillows and a blanket to make sure that I am as comfortable as possible. We also avoid winding roads and stay on the interstate as much as possible. If there are a lot of turns or curves then I get exhausted from holding myself in my chair. I never knew in my healthier days just how much core muscle strength it took to sit in a car as it took curves. It is exhausting now and leaves me weak and shaky. If you are the same way then you might want to plan a route that will avoid as many curves as possible. Long car trips are hard, but they can be really fun. It's great to see the sights along the way (even when it is only out of your window), and it is fun to see family at the end of your destination. Rachel

I'm glad that you are doing better now than in your first trimester. Reaching the 12 week mark can really make a difference sometimes. I hope that the rest of your pregnancy goes well and that you and the baby both stay as healthy as possible. Rachel

Hi Potsgirl, Having POTS can definitely be uncomfortable and feel really bad, but it in and of itself it isn't life threatening. It just feels awful. The girl you saw on the video probably had much more than POTS going on. I don't know the details of her health, but she might have had pretty bad gastroparesis. If gastroparesis becomes severe a patient may have to be on tpn or tube feedings. It's a necessary treatment for them, but they run the risk of complications and infections, some of which can become very serious. That's not something a typical POTS patient has to deal with. And even then, POTS isn't the problem. Gastroparesis and complications are. I know it's hard to understand when you feel your heart racing, feel faint, nauseated, etc. It's miserable and can be scary. I remember my doctor telling me when I was first diagnosed, "This isn't life threatening. You may feel like you're going to die, but you won't." So hang in there. We're here for you and we understand what it's like. Rachel

To share a picture you need to upload it to a photo sharing site (like Flickr or PhotoBucket). You can then link directly to the photo's URL. That will embed the picture within your post for us to see. You can also link to the page where your picture can be found, and members can click over to see your photo. Hope this helps! Rachel