Rachel

Sue, For some reason, with the new forum the searches only allow a certain number of topics to come up. You can narrow it down to a small time period way back and usually get stuff, but not always. It's a little buggy. We recently had a forum upgrade, and I am hoping that this worked out some of the bugs, but I haven't gone back to the search form to check. The search box works better if a rarely used word is searched. Then it will go way back. However, if you search for a very common term, like "POTS" or "Dysautonomia" then only posts from the past 3 or 6 months come up. It is frustrating, but it isn't something we can change. It is a quirk of the forum. Rachel

Hi Julie, If you go into a member's profile you can click on "Find My Content" below their profile picture. This is a little different from the topic and post tab found to the right of the profile picture. Clicking on "Find My Content" will bring up a page of all of the member's posts and topics from the past year. Using a drop down menu on the right you can narrow that down to either topics started by the member or individual posts. Hope this helps. Rachel

I have a blog. It is: cranberryteatime.com I haven't been able to do much blogging lately, but I do hope to get back to it soon. It is a good way to keep in touch with friends and extended family members. It is also a fun creative outlet. Rachel

I get normal saline. I get electrolytes in my Gatorade each morning. I also take magnesium and calcium supplements each day. At this point I don't really need the electrolytes in my saline. I just need the extra fluid volume. Rachel

Sue, some people probably clicked "View Results/Null Vote" instead of casting an actual vote. Those get counted in the number of people who voted. Rachel

Hello and welcome, Traci! I'm glad you found us (but sorry you needed to). There aren't any POTS specialists in the Atlanta area. If you want to see a specialist you might want to consider going to Vanderbilt. There are some good doctors there who might be able to help you and also pass on helpful information and instructions to your primary physician back home in Atlanta. As for the pain in your head, it could be migraines or headaches caused by dysautonomia. You might also be getting strange pain sensations if you aren't getting adequate blood flow to your head. Increasing water and salt intake could help, as could compression hose or midodrine. I hope you'll be able to find something to help relieve some of your symptoms. Rachel

Hello and welcome! I hope that you find the forum to be a helpful and friendly place. I get 1 liter of saline three times a week. It is infused over 2 1/2 hours. A nurse comes to my home to start a new peripheral IV each time. Rachel

Hi Donna, You can find Dr. Grubb's information here: http://utmc.utoledo.edu/physicianapp/physingle.jsp?ID=75

I had this problem about 13 years ago. My family went to Disney World, and my feet hurt me so badly by the end of the first day. On the morning of the second day they felt normal. By that night they hurt badly again, and they still hurt when I woke up that next morning. I pushed through the pain because it was Disney World and it was worth it, but...OUCH! It was painful. The painful feet thing has happened to me many times since then. It hasn't been a problem for a few years now, but that is probably because I can't walk long enough for my feet to hurt like that again. The only thing I found that takes the pain away is time off of my feet. Rachel

9 months ago I started having a problem with skin peeling. It is strange because my skin isn't dry and peeling. It looks and feels normal, but then I go to wash my hands and the top layer of skin rubs off of my palms and the bottoms and sides of my fingers. At its worst it rubs off three times a day. At best it comes off about three times a week. It is so strange! I can be very gentle when washing my hands, but the top layer of skin still comes off. My palms get sore when it happens three times a day, but if it is only three times a week it doesn't cause any pain. I have mentioned this to a couple of my doctors, but neither of them have any idea what might be causing the problem. I'm going to see Dr. Grubb next week, so I'll ask him if there is any sort of a dysautonomia connection. Rachel

Florinef takes time to build up in your system and help your body retain fluids. It wouldn't be beneficial to just take it on a "bad day" or "bad week." Fluid and salt loading would be something you could do more of when necessary. If you haven't tried midodrine before, that might be a good option for you. It is short acting. It helps almost immediately, and then it is pretty much gone 4 hours later. It would be safe to take midodrine here and there as your body needs it. A couple of years ago I thought I was on my last option med. Since then I have found some more treatment options. Keep searching and looking for answers. There may still be a medication, a supplement, or some other "help" out there for you. Rachel

Hi Dani, I'm so sorry. It is very hard to be a mom with dysautonomia, and sometimes we need help. I have been thinking about you a lot since you posted this topic, and my heart goes out to you. It is hard to not be able to care for children in the way we desire. I don't know what the difference in cost is between day care and hiring someone to come into your home, but perhaps in-home help would be an option for you. That way your daughter could stay home with you, but you would have someone else there to "be your arms and legs." My husband helps me a lot at home and with our children. He does all of the cooking and cleaning and shopping, and he does a lot of the active care for the children. I want so much to be able to do the traditional wife and mom stuff, but I just can't do it. My body won't allow me. For the past 9 months we have had a lot of help with childcare. For a while we had friends who volunteered to take care of our children in their homes while my husband had to be in class. This past semester we hired in-home help in the mornings while my husband was at seminary. The in-home help was much better for us than sending the children elsewhere to be take care of. With in-home help I was never alone, so if I needed someone to bring food to me in bed, get my meds, etc. I had someone there. Our "worker" also helped with some things like laundry and dishes. Even after all this time, it is still hard for me to be in bed while I can hear or see someone else taking care of my children. I am their mommy, and I want to do it myself! I love playing with my children, teaching them, and just being with them. I wish I could do more for them and with them. Instead, I do what I can. I show them all the love I can, and I help to make sure that their needs are taken care of, even if that means hiring someone else sometimes. I can tell from your post that you love your daughter; you care for her so much and want what is best for her. It sounds like your heart is in the right place as you make decisions regarding your daughter's care. As time goes on and life changes, I hope that you will be able to find a solution that you are comfortable with and that is satisfying for you and your daughter. Hugs to you, Rachel

Hi Brynne, Using a wheelchair to enable you to get out more is a good thing. It is a hard step to take, but I think you'll be glad once you do. You will no longer be quite so homebound. You mentioned that you are afraid that you'll become accustomed to not walking around, thus making walking harder. That isn't likely to happen. You don't have to use the wheelchair all the time, just when you need it. You can use it as a tool to enable you to be more active when you would otherwise have to be sitting at home. When you are feeling well enough to walk, you can leave the chair at home. I have used a wheelchair for over 6 years now, and it enables me to do much more than I would be able to otherwise. I use it almost every time I leave our apartment. Exceptions are situations like going to a friend's house when I can go straight in and lie down on the couch. I don't use my wheelchair at home because we live in an 800 square foot apartment, and I am usually strong enough to walk around the apartment on my own as needed. Although there are still the occasional times when I can't walk the 15ft to bed, and my husband has to carry me. But I am committed to walking as much as I possibly can. I have a walker that I use around the apartment as needed, and when I take the children outside to play. I remember being self conscious when I first got my wheelchair. It definitely was weird! But it was also necessary, so I learned to deal with it. And in time I have really come to appreciate my wheelchair because of the freedom it allows me to have. Without my wheelchair and my husband to push me around, there is no possible way I could do things like go to the zoo with my children, go for a "walk" outside, go to church, etc. Being disabled and using a wheelchair is a humbling experience. Over the years I have learned to swallow my pride, and sometimes even laugh and the strange situations in which I find myself. I have mostly gotten over the fear of what others think when I do strange things out in public. It is still a little embarrassing, but I'd rather go out and look "different" then be completely homebound. I am to the point now where I often cannot sit up in my wheelchair for more than an hour. But I don't want to miss out on fun stuff. I have laid down on the floor at my brother's wedding, at my sister's graduation, in restaurants and stores, at conferences, etc. That would be sad if you have to miss your cousin's wedding. Don't be afraid to go in a wheelchair or to lie down for a little while if you need to. Dysautonomai takes a lot away from us, but if you get creative you can sometimes find ways to work around the difficulties. You mentioned that showers are exhausting. Do you have a shower stool? You can get one online for around $30. Many of us find them very beneficial for showering. You might want to check into one of those. Depending on what kind of insurance you have, it might be covered by your insurance. A wheelchair might be covered as well. You'll just have to check with your insurance to see if they will cover it, and if they do then you need to get a prescription for one from your doctor. Even if your insurance doesn't cover the wheelchair you can buy one yourself from an online store, at a medical supply store, or on a place like craigslist. I have rambled on quite a lot, so I'm going to be quiet now. I wish you all the best as you make these tough decisions. Rachel

I use lidocain at the dentist and it hasn't caused problems for me. If you think it will be an issue for you, you can ask your dentist for someting without the epinephrine. Rachel

I take amitriptyline (30mg a day) for migraines, and it has been helpful for me. My migraines come with extreme sensitivity to sights and sounds, and my neurologist said that amitriptyline would help with that specific migraine symptom more than the Topamax that I had been on previously. I haven't noticed that the amitriptyline helps with any of my other dysautonomia symptoms. It does make me a little sleepy 2 hours after I take it, but I still have to take melatonin to sleep at night; so I wouldn't say that the amitriptyline helps with sleep for me, though it does for others. I haven't had any side effects at 30mg of amitriptyline, but I did at 40mg. The 40mg dose caused too much fluid build up and pain in/behind my eyes. I have never tried Coreg, so I can't share anything there. You might find it helpful to start just one new medication at a time. That way you can know for certain which med is causing which side effects, or which med may be helping. I hope that you can find a good medication combination. It can be a long and hard process, but don't give up! All the best, Rachel

This is a reminder to all that a tone of kindness is appreciated in all discussions. We will all have differences of opinion, but these need to be discussed in a mature and polite manner. If you have a disagreement to work through with another member, please do so privately. We want the DINET forum to be a helpful, supportive, and encouraging place for all. Rachel From the Forum Rules: Respect For Others A tone of kindness is appreciated in all discussions. Please do not post information regarding anyone else's health without first obtaining that person's permission. You agree, through the use of DINET's services, that you will not post condescending, defamatory, obscene, offensive, violent, racist, profane or illegal material on this forum. DINET encourages you to use good judgment, but please do not be judgmental in posts. You agree to refrain from flame wars, debates and the discussion of "hot topics," which are likely to provoke debates. Common hot topics include, but are not limited to, politics, abortion and religion. Asking for prayer is allowed, but please do not use this forum to promote your religious beliefs. Posts dealing with sex-related issues should have a tone of maturity. DINET's forum has a built in censor that removes profanity and replaces it with "****." Attempts to bypass the censor by the misspelling of inappropriate words will be edited. Clarification: The following definitions are provided to clarify DINET's forum rules. However, DINET's forum rules are not necessarily limited to these definitions. Definitions are from The American Heritage Dictionary of English Language, Fourth Edition. Condescending: 1. "Displaying a patronizingly superior attitude." Defamatory: "To damage the reputation, character, or good name of by slander or libel." Obscene: "1. Offensive to accepted standards of decency or modesty. 2. Inciting lustful feelings; lewd. 3. Repulsive; disgusting." Offensive: "1. Causing anger, displeasure, resentment, or affront. 2. Making an attack. b. Of, relating to, or designed for attack." Violent: "1. Accomplished by force: coercive, forcible. 2. Extreme in degree, strength, or effect: desperate, fierce, furious, intense, terrible, vehement." Racist: "1. The belief that race accounts for differences in human character or ability and that a particular race is superior to others. 2. Discrimination or prejudice based on race." Profane: "1. To treat with irreverence. 2. To put to an improper, unworthy, or degrading use; abuse." Illegal: "1. Prohibited by law. 2. Prohibited by official rules." Judgmental: "1. Of, relating to, or dependent on judgment. 2. Inclined to make judgments, especially moral or personal ones." Public Disagreements with Other Members You agree that if you ever have a disagreement with another forum member you will not attempt to persuade other members to take your side of the argument or publicly post about it on this or any other forum, blog or website. Please be mature and talk to any member you disagree with privately.

That's great! Thanks for sharing!

Validating members are ones who have not yet completed the registration process. There are two steps to finalize forum registration. One is to click on the link in the validation email sent to the new member. The second step is sending an email to Nina and me in which the new member needs to state their name, screen name, and diagnosis or suspected diagnosis. These instructions are clearly stated at the beginning of the registration process. After receiving an email from the validating member, Nina or I then manually approve the account. We realize that this creates an extra hassle for the members (and for us!), but it prevents spam accounts from making it onto the forum. Before this extra step in the registration process was added, there would often be spam accounts created that would then fill the forum with ads for medicine (similar to spam medication ads that you might get in your junk email folder). Some of the members who are validating probably did not fully read the instructions to complete the process. Others decide that they didn't really want to participate in the forum and chose to not complete their registration. Some of the other validating members you see are spam accounts that couldn't make it past the final step in the validation process. Rachel

I'm so glad you have seen improvements with exercise. It is encouraging to hear. Thanks for sharing! I hope that exercise continues to help you. Rachel

One more thing. I find stockings easier to put on than to take off. I often ask my husband to take them off for me at the end of the day as I am too tired and weak to do it myself. I can usually manage taking of old compression that has lost a lot of its strength, but at that point it really needs to be replaced. It is really tough to take off compression that is still truly 30-40 mmHg. Rachel

Hi Naomi, I wear 30-40 compression. I have tried 20-30 but it wasn't strong enough to be helpful for me (although some potsies do find it beneficial). I have tried the waist high, but it was too tight and painful for my tummy. I do have some thigh high compression that I wear, but most often I wear knee high compression (30-40) coupled with Spanx that offer mid-thigh to waist compression. I used to struggle a lot to get my compression because I was trying to put them on like one would put on regular socks. Then I figured out a trick that makes it easier. I'll try to explain it for you. Start with the compression turned inside out, then turn the foot and heel part "right side out." Slide your foot and heel into the stocking. At this point your foot and heel will be in, but the rest of the leg part will be sticking out past your toes. Take the rest of the stocking and pull it up your leg. You may then need to adjust it a little bit, but for the most part everything should be in place. It is really hard to explain this! I wish I had pictures. I just did a search online, and I found this webpage that offers some tricks, and it has a vide of a lady putting on her stocking in the way I just described. http://www.eldercareteam.com/public/549.cfm I hope this helps! Rachel

I take back what I said about the Juzo stockings. I just checked, and they are the softest on the OUTSIDE, but my Jobst stockings are the softest on the INSIDE. Bananas, that's great that your insurance covers compression. If you are able to get coverage for the Ames walker brand, then gauze sounds like the way to go. All of the other brands are so expensive when you have to pay out of pocket, even if you do purchase them online. Rachel

My doctor put me on Riboflavin (400 mg a day) for treatment of mitochondrial disease. It does seem to help a little bit with my energy level. It also helps with preventing my migraines. Rachel

Do you use the Ames Walker brand of stockings? They are rougher inside than others are. From the different brands I have tried, I have found Juzo to be the softest and Ames Walker to be the roughest. Maybe trying a different brand would be helpful. Rachel