Rachel

Interesting! Thank you so much for the update. I'm really glad to hear that they are moving forward with trials for midodrine. I hope that it is proven to be beneficial. I know that it has been beneficial for me, and I don't want to have to go back to life without midodrine!

I start feeling better about halfway through a bag of saline. The positive effects last for about 48 hours. After that most of the fluid is flushed out of my body. The helpful effects are pretty quick, but they don't last long term.

Rachel

MartiZ,

Yes, it is true that there is no diagnosis code for POTS. There are ones for other heart rate or blood pressure issues, like the OH code you mentioned above, but there isn't one specifically for POTS.

Rachel

Interesting thought, Trach. I hadn't considered that before, but you are right. The Grinch is a copyrighted name. From what I read online, Dr. Seuss Enterprises L.P. have never sued for copyright infringements before, but they do have the right to do so. http://www.fieldlaw....e-grinch%C2%AE/

I am excited to announce that DINET's full length POTS documentary is now available on YouTube.

We are not able to take new DVD orders at this time, but we do hope to make the documentary available on DVD again later on this year. Meanwhile, feel free to watch on YouTube and pass the link on to anyone who may appreciate it.

I just checked the search feature, and it is the same as previously. I did a search for "POTS" and all of the recent topics came up, but only three pages worth. I then refined my search to include only posts that I had written that contained the word "POTS." At that point 8 pages worth of topics came up, going back to 2005. It is still possible to get to the old posts, you just have to be very particular with the search.

Diabetes can cause dysautonomia. You will find it listed on the Causes page of DINET: http://www.dinet.org...causes_pots.htm You will also find a lot of articles if you google "dysautonomia and diabetes."

I hope you can find out why you are having these high blood sugars.

Rachel

The forum was being upgraded this afternoon, and that could likely be the reason for the errors. I just got a message saying that the upgrade was complete.

If you keep having these errors now that the upgrade is complete, please let me know. You can send me a PM on DINET or an email at dinetforums (at) gmail (dot) com.

Thanks,

Rachel

This current version of the forum has been particularly difficult with searches. Only the most recent pages come up if you search a word that is commonly used, like "POTS." I have found it easier to find older posts if I go to the full form and give more specifics for the search such as a date range or a member name.

We're going to be getting a new version of the IPB forum again either today or tomorrow. This isn't just updates to an old version; it is the new version. I am so hoping that this new version will have a better search feature. Fingers crossed!

Rachel

After you create the poll and click "finish" it will seem to disappear. You'll then need to type in your forum topic, forum post, and click "Post New Topic." When the topic posts your poll will be visible.

Rachel

Have they applied for extra help with Medicare part D? For low income individuals there is help available for paying the part D premium. It also lowers the drug co-pays (can be as low as $2.50 for generic and $6 for brand name) and provides coverage during the coverage gap.

If the problem is just that their insurance won't cover particular meds, then it could be beneficial to switch to a different Part D insurance carrier.

I pair my knee high compression with Spanks (mid-thigh to waist compression). That is what I have found to be the most beneficial. My pooling is mainly in my lower legs and abdomen.

I can't wear thigh highs for very long because of the silicon band. I've tried waist high compression, but it is too tight on my stomach and causes pain.

I like to wear long cotton or linen skirts in the summer. It covers up the majority of the compression, but it is still cool and comfortable like shorts. Also, if it is above about 75 degrees then I don't stay outside for more than a few minutes. Back when I used to be able to stay outside in the heat longer I would sometimes take my knee highs off (while in a chaise lounge), and pour water on my legs every few minutes to keep them cool.

I like ultrasheer ones the best for summer. They are much cooler to wear than the thick compression stockings. Sigvaris and Jobst make some very strong and thin compression. For summer and wearing flip-flops, I wear Jobst UltraSheer Knee High with Open Toe. http://www.ameswalker.com/joulknhi30op.html

I hope you can find something that works for you for the summer.

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!