Rachel

Currently I sleep 10-12 hours per night. The number of hours has changed throughout my years with dysautonomia, ranging anywhere from 6-18 hours depending on how good or bad my health has been. I had a sleep study several years ago that showed alpha delta sleep, which causes unrestorative sleep. No matter how much I sleep, I'm always still tired and sleepy in the morning. Rachel

Do you have stockings with a silicon band on the top? The silicone bands make my skin red, bumpy, and itchy. I can only wear them every once in a while or it gets too sore. I do okay with stockings that just have the fabric at the top. Would putting Neosporin on at night help? Maybe it would help the raw skin to heal better before you have to put stockings on again in the morning. Otherwise, your idea with the gauze sounds good. I'm sure that is probably a pain, though, huh? I hope you can find something to make the stockings easier on your skin. Rachel

I have problems with my vision. Sometimes everything will be a little blurry for a few hours or a few days, making it very hard, if not impossible, to read. I have had my eyes examined, but there isn't anything wrong. It's just dysautonomia making it hard for my eyes to focus. Rachel

Midodrine doesn't have a cumulative effect. It is short acting, and is pretty well out of your system after 4 hours. It won't hurt to push doses to later on in the day based on when your son gets up. I take my midodrine when I wake up. I then take it every 3 1/2 - 4 hours until I go to bed. I go to bed at 8pm, but don't fall asleep until after midnight. Even though I'm in bed, I usually do take an evening dose that will wear off around 10 or 11pm. I need the midodrine even if I just have my head and shoulders propped up in bed. Midodrine doesn't cause an increase in supine blood pressure for everyone. You can have your son lie down after he has taken midodrine and check his blood pressure to see if it causes a problem for him or not. Rachel

Hi Arizona Girl, If your PM box is getting too full, you can archive conversations and have them sent to your email account. This feature is found in the PM system. Anytime you have a conversation open you will see a box to the left that says, "Archive Conversation." Clicking the "Send Now" button within that box will send the message to your email address. If you need more storage space for messages, you are also welcome to use email for communication instead of the PM system. Many members do allow emails to be sent to them from fellow DINET members. Under a member’s profile you will see a box that says, “Contact Information.” If the member has allowed emails from DINET, then there will be a link there that says, “Click here to email me.” The forum is a service that DINET offers for free to all members; however, the forum is not free for DINET. There are yearly costs associated with maintaining this forum. Increasing PM storage limits for all members would increase the memory space we need. Rachel

I always buy my compression stockings from www.ameswalker.com. Jobst, Juzo, and Sigvaris are my favorite brands. They all have some styles that are super sheer. Judging by looks you can hardly tell a difference between the medical grade compression and regular nylons. I also like the toeless kind sometimes too so that I can wear flip flops in the summer. They toeless kind is never as sheer as the regular compression, though. Wearing thigh high compression with the silicon grips has made the skin on my thighs hurt. It gets very itchy and sore on the outside of my legs. For that reason I rarely wear thigh highs anymore. Usually I go with knee high stockings and mid-thigh to waist compression garments (like Spanx). I hope you can find styles and comfort that works for you. Rachel

I'm happy for you! I hope that the new diagnosis and meds will be beneficial. All the best, Rachel

That's great that you found something that helped you! Thanks for sharing. Hopefully the guys we have here will see your topic. Rachel

Firewatcher, It is okay to change the font colors. Blue, like you mentioned, is usually easy for people to read. Colors that would be hard to read would be ones that are really pale, like yellow. Pale text on a white background is hard on the eyes. We still wouldn't want large quotes from previous posts to be quoted in blue within the same topic as this would take up unnecessary memory space, but I don't think that's what you're talking about. If I remember correctly from your posts you have used blue text for either short quotes or for articles that have been posted. Sometimes it is appropriate to use quotes in this way, and if you want to change the font color to another color to make it stand out, that is fine. Rachel

Thank you, everyone, for being conscientious about not using quotes in your posts. It is much appreciated! Rachel

Hi Ernie, Thanks so much for coming back to check in and let us know how you're doing. It is great to hear that you are dancing! Keep enjoying it! Rachel

Hi Julie, Thanks for asking. If you would like to direct a post to a specific member who didn't start the topic, please use their name at the beginning of the post. That way others will know who the post is written to specifically, and if they want to read the previous poster's question or comments, they can scroll up and read it in the topic. As Nina said, the quotes are a problem for several reasons. They make posts harder to read for those who are sensitive to light and color changes. It takes longer for members to scroll through topics that have multiple quotes. Large quotes also take up valuable memory space on the site for information that is already in the topic to begin with. Thanks for working with us on this and helping to make the forum a welcoming and helpful place for all. Rachel

Hello DINET Forum Members, The moderators request that you please do not include long or unnecessary quotes when posting a reply to a topic. When topics are filled with too many quotes it can become more difficult for other members to read. The moderators regularly remove excessive quotes from topics, and this has been a difficult job lately because the forum has been so busy and the number of quotes has greatly increased. From Sunfish's topic, Helpful Hints for Forum Participation: Posting Replies: When replying to a post, please use the "Add Reply" at the upper right hand side or bottom right hand side of a topic and NOT the " "reply " icon at the lower right hand portion of each post/reply. This prevents every post from being repeated in quotations with each reply, which can be difficult and tedious for other members to read. We realize that this is a bit confusing and is something we are unable to change as it is part of the host site we use. If you have any questions or need further help, please ask! Thank you, Rachel and the Admin/Moderator team

Hmmmm... I'm stumped. Changing the filter to "show all" should work. One thing that might help with searching is to narrow the time frame down to a year or less. If searching for a commonly used word like "POTS" from the years 2004-2009 then there are too many posts, and they don't all come up. If you search for a term that is rarely used on the forum then it is easy to find old posts. I'm not sure why it is like this with the search feature now. It has been this way ever since the forum upgrade several months ago. Rachel

Hi Sue, I think I can answer your question. You can change your forum filter settings for your account. This will allow you to scroll back through all of the old forum pages. To change these settings, scroll to the bottom of the forum you want to change the settings for (Dysautonomia Discussion or Chit-Chat). Just below the list of topics you will see a dark blue bar that goes across the screen from one side to the other. In the center you will see the words, "Click here to show filter options." Once you click on that you will have several scroll down boxes appear. Go to the one that says, "Time Frame," and click, "Show All." Then check the box that says, "Remember Filters." And click "Go." This should allow you to scroll through all of the old topics. The chit-chat forum goes back to December 2005, and the Dysautonomia Discussion forum goes back to September 2003. There is also a way to change the search settings so that you can find older posts when you search. To do this you need to go to the search form, not just the small search box. The full search form can be found by clicking on the little button to the right of the search (mangifying glass) button. The button for the search form looks like a little gear to me, but I'm not exactly sure what it is supposed to be. Anyway, click on the little "gear button" and it will bring up the search form. In the form you will have the option of choosing the dates you want to search through. This makes it easy to search for a topic that you know was from a few years ago. Hope this helps. Rachel

Hi Emily, How fun to see your name pop up today! I think you are probably remembering Richland Acres. Here's an old topic about compainion and service dogs that she posted in: Service Dogs Rachel

Hi Libby, Welcome! If it were me, I would not want to take those meds on the day of my test. Like you said, they could change the results of the test. Maybe you could call and confirm whether or not the doctor wants you to take them, or if a nurse or someone in scheduling just saying that it is okay if you take them. I hope your TTT goes well and that it gives your doctors the information they need. Rachel

Welcome to DINET. I'm glad you found us, but I'm so sorry that you have to be here under such circumstances. It must be very hard to watch your little ones suffer as they are. Have you looked into mitochondrial disease? Some of the symptoms you mentioned really jumped out to me as mitochondrial disease, especially considering that both boys are so severely effected from birth. Here is a list of symptoms from the United Mitochondrial Disease Foundation: Possible Symptoms. UMDF has an excellent website that you may find very helpful if you choose to explore the possibility of a mitochondrial disease. I wish I could offer more help. My heart hurts for you and your little boys. Blessings, Rachel

You might find that a different brand works better for you. There are some brands that I can wear comfortably, and others that do not fit the shape of my foot and ankle. The Ames Walker brand gives me creases on my foot/ankle. The Sigvaris brand is a little tight there, but it doesn't leave a crease. Jobst and Juzo are very comfortable on the top/front of my ankle. I have never tried Mediven, so I can't comment about how those fit me. I don't know if this makes a difference, but I have big feet (womens size 12). Perhaps for me this makes the distance between my heel and the top/front of my ankle a longer distance. If someone has smaller feet then maybe they wouldn't get the extra pressure where I do. Compression really shouldn't be worn for 48 hours straight. They are only meant to be worn while you are up during the day. They should come off when you go to bed at night. I also take mine off if I lie down to rest for more than 15 or 30 minutes. I hope you can find some compression hose that work for you, Sally. Rachel

I think the NDRF forum has been closed for almost 2 years now. I haven't seen it open in a very long time. I think it likely had to be closed because members were misusing the forum. Rachel

I'm sorry you've been losing weight because of gastroparesis. With gastroparesis it is good to follow a low fat/low fiber diet like your doctor recommended. If you are still having trouble getting enough calories, you can add in drinks like Ensure. You can also switch from drinking water to drinking juice, soda, and gatorade. If you are losing weight, you don't want to be taking up space in your stomach with water, something that provides 0 calories. Replacing that water with juice, soda, and gatorade will help to keep your calories up. I follow a low fat/low fiber diet, but when my gastroparesis flares up I have to switch to a liquid/soft foods diet. I eat a lot of soup, pudding, yogurt, ice cream and milkshakes, Instant Breakfast drinks, and small ammounts of applesauce and mashed potatoes. I stop drinking water for the most part and start drinking soda, juice, and gatorade. Every calorie that we can squeeze in helps. I have especially found ice cream helpful. Because of the fat and sugar it packs a lot of calories, but because it melts into a liquid I am able to easily digest it. I have a much harder time with the fat found in meats and cheeses. For me, ice cream and milkshakes go down easily and don't hurt my stomach. If you haven't read the Step Diet before, you might find that helpful. It lists very specific foods that you can and cannot eat depending on how severe your gastroparesis is, and it provides sample meals. You can find the diet here: Gastroparesis Diet. I hope this helps. And I hope you will be able to get back to a good and stable weight again soon. Rachel

Hi Kathy, I had some rough times with my POTS when I was 15 and 16, and then my health improved significantly for a while. I was able to work at summer camps from the ages of 17-21. I could tolerate the conditions of no air conditioning and hiking through the mountains. I was also able to go to college, something I had at one time thought would be impossible. My health has gotten a lot worse since then, though. Sorry. I know I don't have the most encouraging story. The good thing is that about 80% of teenagers do recover from POTS by the time they are in their mid-twenties. I was reading that earlier this week in an article by Dr. Grubb. You don't find too many people here on DINET who have recovered because they are out living their lives, not stuck at home looking for information and support. You do have a good chance of recovering or at least being able to lead a fairly normal life. Keep working hard and doing what you can to treat your POTS. I hope and pray that in time you will recover. Rachel

Prescription meds that can help are Provigil, Adderall, and Ritalin. Over-the-counter things that might help are B12, CoQ10, or a good multi-vitamin. Caffeine is also helpful for some of us. Rachel

Hi Kathy, Welcome to DINET! I was first diagnosed with POTS at the age of 15 (which was 15 years ago now!) after about a year of searching and misdiagnoses. There are other treatments available besides midodrine that may be helpful in preventing the dizziness for you. You can read the What Helps page on DINET. There is a list of medications and another list that has non-pharmeceutical treatments. I'm glad you found DINET. I hope that you find this to be a helpful and supportive place. We do have some other teenagers here, but they don't always post regularaly. Hopefully some of them will pop up soon. Rachel