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Everything posted by Katybug

  1. Happy Halloween, everyone!! Dysautonomia can certainly be a scary ride! That's why I'm happy to welcome our newest members to our community! Please help me give our new found friends a spooktacular welcome: Cat Jill JuliaMaple Leegal Happy pots Samantha Elaine Renee
  2. Thanks for those kind words, dancer65! You have shared your experiences too and I'm sure you have helped our members as well!
  3. This is not the 2nd study we've been waiting for, but, it is an additional small study that again links POTS to autoimmunity. (The large study we've all been waiting for is still ongoing.) http://m.europace.oxfordjournals.org/content/early/2016/10/04/europace.euw154.full?ijkey=yNgpIRCkIFYHg6X&keytype=ref
  4. Growing! Growing! Growing! That's what our membership is doing! Please help me welcome the newest members of our community! BeachLover Cindyrendy jpsimpson LoLinda thannguyen etciel hyperandrenergic**** Lisakay Smiller75 Delia sb4 Sunspots Jacob Marian
  5. Thanks, Corina. It's pretty interesting how well this treatment works and it's noninvasive and not another pill!! Yay!!
  6. Update: I am having very good results from using my Cefaly device. Truth be told, I'm a little addicted to my treatments. I look forward to them everyday. It has not broken my migraine but it has reduced the severity significantly. I have been using much less medication to control the pain. When I do have to use meds, they are more effective. I am looking forward to seeing how much more improvement I will see with continued use. I did have a problem with my unit and I learned 2 things: 1) the customer service from the company is great, and 2) a week without my treatments showed me just how much they were helping me because the last 4 days the pain was awful. My new unit just came today and I just did a treatment and it's amazing how much better I feel already.
  7. The Epsom salt creams work but they can be a bit gritty and leave a "dried sweat" feeling on your skin from the salts. But they are an alternative to doing a soak. Good call, Amyschi!
  8. I wonder if doing a warm Epsom salt bath or foot bath before bed would help this. My geneticist has me do Epsom salt foot baths as the magnesium is easily absorbed through skin and can help a plethora of soft tissue issues.
  9. Our membership keeps growing! Please help me welcome our newest members to the Forum: Renne LoriJo garreja14 Kell surfing pastor Schlermie Dave H haugr Luckidog Lauren_Elaine PollyTMEP pokane Andrea Raquel I hope you all find great information and support from our community!
  10. Hi pokane, MomtoGiuliana covered most of it. Just wanted to say hi. It sounds like you are on the right track. If you do addition home tests, the change in HR is measured in the first 10 mins, so you may want to record the actual readings at 1, 3, 5, 7, and 10 mins of standing. Take care, Katie
  11. Wowza!! We've had a lot of new members join us recently!! While I'm sorry they have a need to be here, I am so happy that they have found our beautiful community! Please join me in welcoming all of our newest members: Adjusting1. helena87 Cinnamon. Potsie Girl Ayowen. DebX Pearlsgirl1. Daniel Laura B. shart33 Terri Snyder. Rhondadela Erin. Fiona Jack Morrison. Tabitha Massimo. Abigail Jessicarose95. John213 Lisa S. Dee Dee Bopler. Lou M Apotsie. Jenniy122 Oldpotsie
  12. You may want to go to www.ednf.org and do a search on their forum. I know there have been many posts there about the dental issues/complications involved with EDS.
  13. Hi Gertie, No, there isn't a way for you to delete your posts. If you are having an issue, please PM myself or one of our moderators: SarahA33, MomtoGiuliana, or corina. Take care, Katie
  14. I've been seriously I'll from POTS since 2007. However, I now know that I had subtle symptoms of autonomic dysfunction and EDS complications all my life. Nothing was disabling enough to stop me or make a doctor really put it all together until 2007. Then it took 3 1/2 years to start figuring out what the proper diagnoses really were.
  15. There are many different tests for autoimmune diseases. ANA is just one of them and it is a "non-specific " test meaning that it indicates autoimmunity but not a specific disease. Some autoimmune diseases have specific autoantibodies that can be detected such as myositis. (Here's an example of this: http://www.myositis.org/learn-about-myositis/diagnosis/antibody-testing) There are other non-specific tests as well, C reactive protein (CRP) is an example of one. CRP is an inflammatory marker so it is not specific to autoimmunity but is another clue that there may be autoimmune issues if CRP is elevated. It can be elevated for other inflammatory reasons as well. SS-A is another example of a non-specific autoimmunity test. (Here's an explanation of SS-A: http://www.mayomedicallaboratories.com/test-catalog/Clinical%20and%20Interpretive/81360 ) I hope this helps your understanding of the different testing.
  16. I do think you should mention this to your doc since it's a new symptom. I have this issue daily. There are many things I forget about conversations I've had with people, I have no name recall for new people I meet anymore, I forget story lines to shows, I can't remember what I read in a book just a few minutes after reading it, I know I drove myself from point A to point B but I have no recall of the drive (this one scares me the most because it makes me wonder if I was paying attention while driving.). It was scary at first but I've gotten used to it. My long term memory is still perfectly intact, it's my short term memory that is a problem. Before I was dx'd with POTS, this was so concerning they sent me for neuropsychiatric testing to make sure I didn't have early onset dementia (which I don't. ) My POTS neuro says it is from the POTS and likely had to do with cerebral perfusion affecting the memory center in the brain. I know it's scary (and you should consult your doc) but it may very well be just another highly annoying symptom that thankfully isn't dangerous.
  17. When I was in college, I had a semester where I was struggling g due to depression. I asked my professors for private meetings and I was honest with them about what was going on. All five of them worked with me to help me get through the class work. A couple extended deadlines on assignments for me, one actually excused one whole assignment (which I didn't ask for but was happy to take them up on the offer.) The two others had attendance requirements for class which they waived for me with a note from my counselor confirming my diagnosis. They just required my attendance at exams and that I turned in my assignments. There is no guarantee how the professors will react but what's the harm in having an honest conversation. The worst they can say is that they don't care and won't make any consessions. Or they could end up being very compassionate and find ways to help you.
  18. Hi Jessica, I feel like this is important to talk through with your EP. They should be able to advise you on the safety of waiting to start the BB and also of having the tilt test at all given this new diagnosis. Glad you finally posted! Katie
  19. What DizzyGirls said.⬆⬆ We are here for you! One foot in front of the other! One step, one breath at a time! Hang in there! There will be a light at the end of this tunnel.....you just can't see it yet! ?
  20. This is fantastic! I'm so glad you struck doctor gold!! ☺
  21. This probably complicates things a little more, but, when it was all said and done, I had to do an elimination diet to actually figure out the food triggers. The gluten free diet didn't help me at all. It turns out that's because I'm not reactive to gluten but am very reactive to rice. What do you replace gluten products with....largely rice products. So I felt worse when I was gluten free but it was because rice was the culprit. Many foods on the low histamine diet don't bother me but other foods do....like avocado and cilantro. So, there were two issues for me ultimately, first ruling out Celiac which is truly autoimmune, then, ruling out other food triggers.
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