Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by Rachel

  1. I drank one cup of coffee per day during pregnancy. We make strong coffee, so it had more caffeine than a typical restaurant or household cup of coffee. I didn't rely on coffee alone for a blood pressure boost, but it did help. I hope you can find something that helps you and that you're comfortable with. Rachel
  2. Congratulations! I'm so happy for you. The pictures look great, and it looks like you had a wonderful day. Rest and recover well!
  3. I buy compression hose from AmesWalker.com. If you get on their mailing list then you will receive notices when they have sales. If your daughter wants fun prints, these might work for her: http://www.rejuvahealth.com/eshopping/style/pantyhose.html Unfortunately none of their patterned compression hose goes above 20-30 compression, so if your daughter needs 30-40 then the fun prints won't be strong enough for her. I hope you can find something that works well and fits within your price range. Rachel
  4. Profiles only display the last 5 posts and the last 5 topics. If you are looking for a post written by a specific member you can do a search and narrow it down writing the member's name in the "find author" space.
  5. My sister has POTS. As far as we know there isn't a family history of dysautonomia prior to us.
  6. If you try uploading a small file it will probably work for you. Pictures have to be less than 100KB. From Sunfish's topic, Helpful Hints: Adding a Photo: You may also notice that many members have a picture with their profile. If you have a picture of your own that you would like to use, you may upload it to the forum through your Settings. To get to your settings, click on your screen name at the top right corner, and a menu will drop down. Click on "My Settings." You will then be in your general account settings. Click on the gray button that says, "Change your photo..." You may upload a photo that is less than 100 KB. If you have a Gravatar, you may link to this for your profile photo.
  7. Hi Naomi, I'm glad you liked it! CHANGES was made by DINET a few years ago. It was directed by Michelle Sawicki and Alexia Anastasia, and it was edited by David Meiklejohn. I do plan to put it on the DINET website, but that will have to be in the future. We have some major work to do on our website. It is currently in an old format, and I can't access it from my computer. There are few ducks still to get in a row, but after that fixing the DINET website is at the top of my DINET to-do list! Rachel
  8. A tool that I have found helpful is the Drug Interaction Checker. You can type in all of the medications that you take, and it will let you know if there are potential risks and how great the risks are. This shouldn't be substituted for talking with your doctor, but it can be a helpful place to start. If something comes up in the interaction checker then you will have something specific to ask your doctor or pharmacist. Drugs.com gives the following disclaimer when you check your medicines and the interaction checker doesn't find any risks: "No results found - however, this does not necessarily mean no interactions exist. ALWAYS consult with your doctor or pharmacist." You can also find a list of drugs are known to react with a particular medication. Here I did a search for Midodrine Drug Interactions. You may find that list helpful.
  9. Everything is still here, but the new search feature makes it difficult to access older posts. If you type in something common, like "POTS", then only a few pages of the most recent topics come up. To get to an older post about POTS you have to specify the month and year you want to search through. Narrowing a search by member name also helps to more quickly locate the one you are looking for. Hope this helps! Rachel
  10. We are moving from Georgia to Minnesota today. I will see you all when I have internet access again!

  11. Forevertired, I was first prescribed IV saline by Beverly, Dr. Grubb's nurse practitioner. I asked her if that would be something I could try. My health had gotten a lot worse, and I was bedridden 21-23 hours a day. The weakness, fatigue, and brain fog were intense. Even while lying down I was often on the verge of fainting. My gastroparesis flared up, and I could no longer drink enough fluids. It was a scary time, and my health was in a very fragile state. We were trying anything we could to help my body recover. My initial prescription from Beverly was for IV fluids once a week. My local cardiologist then got me set up with in-home nursing and IV fluids. At that time she upped the prescription to 3 times a week. The fluids were one of the biggest helps for me as I recovered from my "crash" as I call it. My cardiologist had a few other POTS patients who had success with IV fluids, and I think that helped. Since she knew it was beneficial, she was very willing to do IV fluids long term with me. I have Medicare, and it covered my in-home nursing and IV fluids completely, which was a huge blessing. IV fluids and home nursing are expensive. I hope you are able to get the help and insurance coverage you need. Rachel
  12. Oh my goodness! I have never heard of such a severe allergy to midodrine! How scary. I'm so glad you figured out what was going on. Thanks for checking in with us. I've been wondering how you were doing. I hope that you'll be able to keep in touch now that you have an iphone with a data plan. Yay! I hope that things go better without the midodrine. Have you ever tried compression hose? Maybe that would be a good way to help keep your blood from pooling without the severe allergy risk. Take care, rest well, and feel better soon! Rachel
  13. 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!
  14. 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
  15. 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
  16. 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/
  17. 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.
  18. 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.
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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.
  24. 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.
  25. 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
  • Create New...