Jump to content

Rachel

Members
  • Posts

    2,236
  • Joined

  • Last visited

Everything posted by Rachel

  1. Thanks for sharing about your experience, BellaMia. I hope that you will recover quickly from the procedure. Rest well. Happy Mito Awareness Week! Rachel
  2. I had the Curlin 4000. It's the same one you have, just the older model. I used it around my laptop all the time and never had a problem. Sorry your computer is going wonky on you. I hope you can get it fixed. Rachel
  3. One more thing, I just went to an old poll that was set to "public" and then I logged out. When I wasn't signed in I was able to see the main poll question, but couldn't see any of the poll options for answers or votes cast. It looked the same as a "private" poll would for a non-member. So public and private doesn't make a difference for non-members; they can't see either poll. The only difference is for members - whether or not we see how each member cast his/her vote. Rachel
  4. Naomi, all members can see the poll results, even when it is set to private. If a poll is set to public then we see not only the results, but we also see what each member's vote was. For many polls it might not matter if it is public or private. However, if the poll is ever one on sensitive issues then members would likely want the poll to be privaite so that no one knows how they voted. Rachel
  5. Hi Naomi, The time of 7:42am was referring to the most recent time a vote was received. When someone votes within a topic, the topic is automatically back up to the top of the forum page, and it the time for the most recent activity within the topic is updated. Because you had been the last one to write a post, your name showed up under the "last activity" column for that topic on the forum page. In most topics this would mean that you had actually posted at that time. However, in topics with polls this can mean that although you had been the author of the last written post, someone else had a more recent vote. So there's no need to worry about your account being hacked. It's just a confusing forum quirk. Rachel
  6. Naomi, The time of 7:42am would have been referring to the most recent time a vote was received. When someone votes within a topic, the topic is automatically back up to the top of the forum page, and it the time for the most recent activity within the topic is updated. Hope this makes sense! Rachel
  7. Julie, it is so good to hear from you! I had been wondering where you went. I'm so sorry about Mack's collapsing and your husband's accident. How terrible. I hope that your husband will continue to improve and regain some movement in his elbow. That's great that Mack is at college and is doing well! I hope that the semester goes well for him and that he will excell in his classes. Rachel
  8. Is it possible that you don't have enough fiber? Or maybe you only need to go every 2 or 3 days? A persons bowel "schedule" can change over time. Mine has changed throughout the years. You never know what dysautonomia is going to do!
  9. There are many of us on the forum who have been pregnant with POTS and/or orthostatic hypotension. You can do a search on the forum and find many topics on pregnancy that may provide you with some useful information. Two years ago I was pregnant, and I took midodrine (15mg 3 times a day) throughout my pregnancy. Midodrine is a pregnancy class C drug because it has never been studied in human pregnancy. Though it hasn't been officially studied, it has never been reported to cause problems during pregnancy. The only reports of problems during pregnancy come from rat and rabbit studies. Midodrine caused reduced fetal weight. Keep in mind, though, that these animals were given approximately 10x the normal dose, plus they didn't need the medication in the first place. In general, it is best to not have to take any medicine while pregnant. But some of us do need it even during pregnancy. For me personally, I needed the medication. I discussed it with my OB as well as a high risk OB. They both agreed that I should take the medicine during pregnancy because it would be safer for the baby if I had a decent blood pressure. If I don't have midodrine and compression then I have too much blood pooling in the lower half of my body. My doctors and I were concerned that, for me, without midodrine and compression my baby would not get adequate blood flow and oxygen. These are risks/benefits that you'll need to discuss with a personal physician who knows your fiance's health well enough to give good advice. If your fiance can get by without the midodrine, then that would be great. But if she needs to take it a high risk OB is the one to discuss the risk/benefits with. If your fiances want to go off of midodrine, then compression garments may be a good non-medicine option. One other thing to keep in mind is that blood volume increases by about 50% during pregnancy. This increase in blood volume may be very beneficial for your fiance, and she might not even need midodrine or compression come the second trimester when she has a lot more blood. I wish you and your fiance the best. Rachel
  10. It very well could be an autonomic issue. The GI tract is controlled by the autonomic nervous system. The GI tract is supposed to work automatically, but for a lot of us it needs some help. For a couple of years I took Amitiza, a medicine that works neurologically to make your intestines move. It was the only thing that worked for me. It is expensive, however, so if you don't have insurance that might not be an option. I don't know if a generic has been created yet or not. I'm no longer on Amitiza. When I got pregnant 2 1/2 years ago I had to stop Amitiza cold turkey. It is a really bad medicine to take while pregnant. I was planning on doing a liquid diet during pregnancy in order to still be able to "go." While pregnant, though, I found that Miralax worked for me. I had tried it a couple of years before, but at that time I still had a large amount of fiber in my diet. Fiber makes things much worse for me, and the Miralax did nothing because of all of the fiber. Once I was no longer consuming so much fiber the Miralax began to work. I now take Miralax daily, and it is still working as long as I don't eat too much fiber. I take a single dose, but some people with dysautonomia need 3 doses a day. Be careful with stimulant laxatives. They are okay to use once in a while, but if you use them daily you will likely find that you need a higher and higher dose to get the same effect. You may find it helpful to either increase or decrease the amount of fiber in your diet. Some of us do better with very little fiber, but some people do better with increasing fiber. It just takes trial and error to figure out what works for you. I hope you can get some relief soon. Rachel
  11. Cerefolin NAC has helped me a lot with brain fog, forgetfulness, cognitive difficulties, word recall, etc. It is a specially forumulated vitamin that contains folate, B12, and an antioxidant. It was first prescribed for me by Dr. Grubb, and if I remember correctly he said that it was originally created for alzheimer's patients, but it works well for those of us with dysautonomia and cognitive difficulties. Another thing that helps me with brain fog is compression and midodrine. Having adequate blood flow to my brain can make a big difference! Rachel
  12. Ginger, I think rheumatologists are the ones who usually know the most about Raynaud's. These might be helpful places to start if you want to read more information regarding Raynaud's disease: http://www.mayoclinic.com/health/raynauds-disease/DS00433 http://www.raynauds.org/index.php Rachel
  13. I voted "other" for diagnosis. 16 years ago I was given the diagnosis of NCS, and then a year later POTS was added to that. However, as time goes on I fit the NCS and POTS criteria less and less. Most recently my doctors have said, "severe dysautonomia," "almost autonomic failure," and "mitochondrial disease." Rachel
  14. I should clarify about my vest. It doesn't have to go in the freezer/refrigerator. The ice packs come out and technically that is what you put in the refrigerator. I just find it eaasier to leave my ice packs in the vest and put the whole thing in the freezer. It saves some energy for me. Ginger, I do have some trouble with cold temperatures. Cold doesn't cause me any pain, however. My body uses up a lot of energy to stay warm, and that makes me more tired. A few hours after being in the cold (for an extended time) I will become chilled to the bone, even though back indoors. I put use heating pads in bed when that happens. Thankfully, I do have a lot of super warm winter gear for when I need to go out in the winter. I used to live in Alaska, so I have boots that are rated for 50 degrees below zero, a very warm coat, thick wool pants, etc. I don't think I've ever had to wear any of them in Georgia, but I did use them a few times in Kentucky in the winter. Ginger, you said that you have pain when you get cold. Is the pain mostly in your extremities? And do your fingers turn white and/or blue? If so, you might want to look into Raynauds. There are several members here on DINET who have both dysautonomia and Raynauds. I hope you can find something that helps with the cold and pain. Rachel
  15. I have difficulty regulating temperature. Just last spring I had to have a heating pad on my neck and face and ice packs on my feet all at the same time. Sometimes I will get autonomic fevers (fevers that have no apparent cause other than a messed up ANS). I feel comfortable if I am in cold temperatures, but a few hours after returning to a 70 degree apartment I will pay for it with chills that won't go away for several hours. I don't think the heat has ever given me a fever. If I am in the heat for too long my legs and feet turn bright red, blood pools rapidly, I get sick and nauseated, weak and tired, and sometimes faint. I recently fainted at 75 degrees while reclined. You know your temperature regulator is messed up when... I do my best to keep myself in a climate controlled environment at all times. I need to stay in temperatures between 68-72 degrees. If I am in anything else for more than a few minutes then I pay for it later. If I have to go out in the heat to get to the car then I always wear a cooling vest. I bundle up in the winter to stay warm during the 15 second walk to the car. Ocassionally I will be in temperatures of abotu 75 degrees for an hour or two (never in the sun, though). For example, I like to go to church whenever I can, but the church is usually about 75 degrees in the summer. Georgian's like it hot; I just don't understand! For times like that I always, always, always wear my cooling vest and sometimes my neck wrap too. I have a cooling vest and a cooling neck wrap from Cool Sport. I really like them both. The vest was expensive, but it was well worth the investment. This is the 4th summer I have used it, and I haven't had to replace the ice packs yet. About the cooling vests - You are supposed to put them only in the refrigerator so that you don't damage your skin from ice frozen bellow 32 degrees. Refrigerator temp is great if the outside temperature is 80 or less. But I have found that a cooling vest out of the fridge doesn't do anything for me once the temperature is above 80. I keep both my neck wrap and vest in the freezer when it is in the 80s and 90s. Cool Sport also makes warming vests. I was going to order one for this coming winter, but now that we are back in Georgia I don't think I'll need it. It rarely gets cold her, which is sad for me. I miss snow and cold! I would gladly buy a warming vest so that I could go sit out in the snow again. I hope these ramblings have helped a bit, and I hope that you can find a way to help control your body temperatures. It's hard work! Rachel
  16. Hi Mary, Thanks for coming back and sharing. I hope that the physiatrist will be able to find some answers for you and start you on some better treatment. Please let us know how things go. All the best, Rachel
  17. Dani, You asked what I was talking about. Are you referring to the glasses I mentioned? They are orange and I call them my "sleep glasses." They block out blue light, and this causes your body to begin producing melatonin, the natural sleep hormone. Wearing blue light blocking glasses in the evening can help to regulate circadian rhythm. These are the ones I have: http://www.amazon.com/Uvex-S1933X-Eyewear-SCT-Orange-Anti-Fog/dp/B000USRG90/ref=sr_1_2?ie=UTF8&qid=1315018432&sr=8-2 They aren't fashionable, but they did help me to get sleepy when my sleep cycle was at its worst. I would wear the glasses for a couple of hours before I wanted to fall asleep. I still had to take a melatonin supplement, but the glasses gave the added boost of melatonin that I needed when I was at my worst. Rachel
  18. I'm so glad to hear that Kayleigh is doing so much better than she was 6 months ago. Yay for getting to go back to school! I really like the song, "Blessings." It's beautiful. Thanks for sharing. Rachel
  19. It sounds like you have a very messed up circadian rhythm. Mine is delayed by a few hours, but not as badly as yours. It's so hard when your body is telling you to sleep when everyone else is awake. Have you ever had a sleep study? That may be beneficial in pinpointing specific sleep disorders. I have tried numerous treatments for sleep - everything from different meds to natural supplements to orange glasses that make your body think it is night time. The only thing that helps me consistently is melatonin. I take 3mg every night. It helps me to fall asleep and stay asleep without making me groggy in the morning like sleep meds do. I sure hope you can find something to help. It's no fun to continually battle a messed up sleep schedule. Rachel
  20. Firewatcher gave some very good advice. I hope that your appointment goes well and that you get the answers and treatment you need. Rachel
  21. I worked as a candystriper at a hospital for a couple of years, and I was an in-home caregiver for a year for lady with MS. My medical training was very little, though, and all of those jobs were post POTS/dysautonomia diagnosis. I really enjoyed working with patients. If I ever get better, I would love to go work in a hospital again.
  22. Nice! I'm so glad you have a cooling vest to help you. They can make a big difference. Mine has been such a huge help to me. I will never do summer without one again! I have a neck wrap and a vest, but I had never seen wrist wraps before. Those look great. How long do they stay cold for you? Rachel
  23. Dear Ann, My heart goes out to you. It is difficult for any of us to live with dysautonomia, but I imagine that it must be so much harder for you to have to watch your little baby suffer from this. I remember you posting last year, and just two weeks ago I was thinking about you and wondering how things were going. I am sorry that there hasn't been improvement. Dr. Rowe at Johns Hopkins is one of the best specialists for dysautonomia, and he sees only pediactric patients. I don't know how young of patients he takes, but I do know that cares for some dysautonomia patients with very complicated cases. You can find him here: http://www.hopkinschildrens.org/staffDetail.aspx?id=3226 The other place that you might find helpful is the Akron Children’s Hospital, specifically their NeuroDevelopmental Science Center. Dr. Bruce Cohen is there now, and he has a great team of doctors. Dr. Cohen used to be my doctor when he was at the Cleveland Clinic. He is brilliant. My husband tells everyone that Dr. Cohen is the smartest man he knows. "In his role at Akron Children’s, Dr. Cohen will partner with neurosurgeon Roger Hudgins, MD, and developmental-behavioral pediatrician John Duby, MD, in the clinical leadership of the Akron Children’s Hospital NeuroDevelopmental Science Center. This center brings together a wide range of pediatric specialists, including developmental-behavioral pediatricians, neurologists, neurosurgeons, neuro psychologist, psychologists and physiatrists, to care for children with ADHD, cerebral palsy, Down syndrome, epilepsy, Fragile X, head injuries, muscular dystrophy, neonatal follow-up, and spina bifida." From: https://www.akronchildrens.org/cms/news/501ba6b5ce1ad963/ I wish there was more I could do to help. You will be in my thoughts and prayers. Rachel
×
×
  • Create New...