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Everything posted by Rachel

  1. Guess what! I discovered a feature that now allows us to give members the ability to change their own screen name! You may now change your screen name up to two times. This will not change your log in name. That will remain the same. It will only change the name that is displayed on the forum. To change your username, please go into your settings. You can find your settings by clicking on your name in the black navigation bar that is at the top of the forum pages. Click on "My Settings." Next click on "Display Name." There you can type in the new display name that you want. Please note that your old display name will still be available on your profile under "display name history." This is something that even an administrator can't change. If you ever need to change your display name for security purposes, please contact a forum administrator. We can help you delete your account and create a new one if need be.
  2. Thank you so much for sharing this video, Carrie! It is an excellent resource. I shared it on the DINET facebook page (https://www.facebook.com/DysautonomiaInformationNetwork), and it was a big hit there too!
  3. For those who may not know, DINET also has a general informational brochure that you can download and print at home. The brochure link is found on our homepage, but here is a direct link: http://dinet.org/images/DINETservicesbrochure2.pdf The brochure that Naomi is mailing out is one that was created specifically for doctors. It is a little more technical. This print-at-home brochure may be more appropriate if you are wanting to pass out brochures to friends and family. DINET's mailing address recently changed. The address on the brochure is not current, unfortunately. I'm working on getting it edited. Meanwhile, our mail is being forwarded to our new address, and the forwarding will continue for 8 more months. I'm hoping that by the end of next week I will have an edited version of the brochure to put on the website.
  4. Thanks so much for taking on this project, Naomi! We greatly appreciate it! Rachel
  5. Thank you for sharing about this study, Janie! And thank you to Dr. Stewart for contacting DINET regarding this current research!
  6. This is great, Kate! Thank you for sharing. We often have people email us and ask about support groups. Would you be interested in having your support group listed on our website? http://dinet.org/supportgroups.htm If so, please send me a message with the details. Thanks! Rachel
  7. I'm not comfortable opening up username changes for a fee. Not everyone can afford to donate to DINET, and we want to serve all of our members equally, regardless of ability to fund DINET.
  8. I took amitriptyline for a year for migraines, and it was helpful for me. The downside was that it messed up my sleep a little. I only took the med at night because of the sleepiness side effect. The first night I fell asleep within 15 minutes of taking it. After about 2 weeks my body had adjusted to the side effect of sleepiness, and it didn't make me sleepy for 2 hours. The tricky thing was that once my body got used to the med, I couldn't fall asleep at all within 2 hours of taking it. So I always had to plan out my bedtime and make sure that I took amitriptyline 2 hours before I wanted to sleep. If I forgot to take it until bedtime, then I wasn't able to fall asleep for 2 hours. It was a pain in that way, but otherwise it was very helpful for me in lessening migraine symptoms.
  9. Hi Imre, A forum administrator is able to change a username. This isn't something we do regularly unless necessary. Because we have so many members, we don't change usernames if someone wants a new name just for fun. However, if there is a good reason for the name change, then it is something we can do. For example, we have changed names in the past if there was a concern about too much identifying information in a username. Please be aware, though, that if we change a username, the username history can be seen in the member's profile. If privacy or security has become an issue, the best course of action may be to delete a member account and create a new one. If you believe that you need a new username or a new account, you can send me a PM to discuss it. Thanks, Rachel
  10. Heather, I take 800mg daily of magnesium oxide. I've never had an upset stomach from it, but that can happen to some people. I tried magnesium malate once, but that didn't work well for me. I'm actually very happy with magnesium oxide. It does cause my intestines to move a little faster, so I like that benefit. My guts are way too slow. If you don't need your guts to move faster, then a high dose of magnesium oxide might not be best for you. Rachel
  11. Hi Bayly, That sounds like a rough month! Migraines can be relentless. I have migraines too, with sensory overload and fatigue being the most debilitating of my migraine symptoms. 2 years ago my neurologist put me on amitriptyline for migraine prevention. He said it was the best for migraines with sensory overload. Previously I had been on Topomax, and it wasn't helping at all. The amitriptyline did help with my sensory overload issues. I took it for about a year. After I was no longer having as severe of migraines, I weaned off of it. It was helpful for migraines, but it caused problems with sleep for me. Once my sensory overload wasn't as severe, I chose to suffer through the sensory problems instead of the sleep problems. I have also found that a high dose of magnesium helps with headache prevention. It hasn't helped a whole lot, but there has been some benefit. I hope you can find something that helps you too. Hang in there! All the best, Rachel
  12. Thank you, everyone, for sharing your experiences. Miriam, it is good to hear that you went to Mayo for this testing and found it to be worthwhile. I'm hoping that they will be willing to test and treat me for mito as well. Hanna, I am considering Mayo because I now live in the state of Minnesota. Travelling to Mayo won't be as time and energy consuming as travelling back to Cleveland. I used to live in Kentucky, and Cleveland was only a days drive away, so it wasn't too bad. Now it would take about 3 days to get there. Terry, I hope that you're appointment at Mayo in AZ will be beneficial. I wish you all the best!
  13. Well, I just called the Sam's Club pharmacy, and they said they can't order saline.
  14. $30 for a case?! Wow, I could afford that! The closest Costco is 4 hours away, but my husband does make a Sam's Club trip every couple of months. Sam's Club is only 90 miles away. We're in a small town in farm country, so my options are limited! Thanks so much for the idea. I hadn't even though of buying in bulk. I will give the Sam's Club pharmacy a call!
  15. Thanks for the information, everyone. I haven't found a way to get IVs in-home here, but I haven't given up on it quite yet. I would be able to get them at home if I were to pay for them out of pocket, but that gets too expensive at $75 per bag of saline. Miriam, are you saying that Medicare will pay for me to take saline bags home if I get them through a hospital pharmacy? I wouldn't have to have the IVs administered at the hospital? We don't even need a nurse to come. My husband can start an IV on me; all we need are the supplies. I can even start an IV if I have someone to help me. So I don't even need Medicare to pay for the nurse visit every time! The supplies are so much cheaper than an ER visit. Chicago, it sounds like you are having the opposite problem from me! Your agency refused to bill for the supplies, which is all my agency said they could bill for. Am I understanding correctly that your part D insurance paid for your saline? That's amazing! I may need to change my Part D if that is the case. I really like my part D insurance, but I was told that they don't cover saline.
  16. Thanks so much for volunteering to be in the Meet the Member column! It was a feature we did regularly a few years ago, but we haven't had anyone volunteer to be featured in quite a while. Thanks for sharing about your life with POTS. Rachel
  17. Welcome back, Miriam! It's good to hear from you again. I don't know of anyone from DINET who is in Hawaii currently. I hope you're able to find someone. Rachel
  18. Hi Friday, When someone joins Meet Others, his/her email address is sent to everyone else in the state who is already in Meet Others. This is the only way we pass on contact information now. We are no longer able to send out contact information to those who request a listing for their state, and we are not able to send email addresses of "old" Meet Others members to those who are new members. We had to make this change for security reasons, and I'm sorry that it has to be this way. There were too many new members who were joining just to spam everyone in their state with a miracle "cure" or something else that they were selling. We received a lot of complaints about this, which led to the change. The only contact information given out now is that of the new members. When someone in your area joins, you will be sent an email with their contact information. It is up to the old members to contact the new members who join. We are wanting to revamp the program to make it more user friendly and allow members to block others, initiate contact, keep email addresses private, etc. It's a big project, though, so it will take a while. Rachel
  19. I don't know why, but this happens to me too. If I push my body too hard then I get small involuntary muscle contractions. If I really push too hard then I get all over convulsions like you describe. I'm going to Mayo next month. I can see if they have an answer to this!
  20. Hmmm... I don't know. I've never had that problem before. I don't have a smartphone or ipad, though. I always use a laptop. You could try using html code to break the paragraphs. If I remember correctly, the code for a break is < b r > You'll need to remove the spaces. I put those in there so that the code won't be translated into a page break and then not be seen. <br> Edited to add: Nevermind. I typed in the html code above to check, and it didn't work.
  21. I don't know of an awareness color specifically for POTS. Blue is usually the awareness color used for dysautonomia. DYNA uses red and Dysautonomia International uses light blue for dysautonomia.
  22. Just wanted to stop by and say that I'm thinking of you today!

  23. I just checked the forum search settings, and the maximum number of results allowed is 1000. I can't set it any higher. So if you're looking for something that isn't discussed as often, you'll likely find a lot or all of the posts. But if you're searching for something common then it will be hard to find it all. I can't find a way to change the search dates so that they go back before 2007.
  24. That's the other problem with the current search feature. It will only bring up a few pages of results if you search for a commonly used term, such as POTS. If you narrow down the time frame to only a few months, you should be able to find the posts. It's a pain, I know! I miss the old search feature that would bring up all of the posts all the way back to the beginning of the forum, no matter how many pages there were. I just discovered that we now only have the option of narrowing down a search back to the year 2007. That's a forum feature that I can't change. The old posts are still there, it's just really hard to find them. I was able to find an old post of mine from 2005 because I knew that I had used an unusual word. By typing that word into the search box, and narrowing the search down by member name, my post came up. It's not always possible to do that, though.
  25. The search feature is tricky. The old one worked much better! If you click on the little gear image next to the search box, it will open a form that will allow you to narrow down your search options. You can search for posts within a certain time period. You can also narrow a search down by member name. Hope this helps! Rachel
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