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About DancingLight

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  • Birthday 10/10/1975

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  1. I have struggled with feeling ill and feeling discomfort when there is pressure against that area of my head as well. I have been checked for Chiari, stenosis, etc. All clear. I DID test positive for Thoracic Outlet Syndrome and the PT for this has resolved a great deal of these issues. My PT uses Dr. Peter Rowe's techniques to relieve neural tensions. I also get massage, take Lyrica, LDN, put essential oils and Deep Blue Rub on the back of my neck. This issue has been consistent for me throughout my 20 years of illness, and when I am trying to rest and want to lie down it can be very difficult to relax because of teh discomfort, the throbbing, etc. Emily
  2. I have been using Tri-Oral for some time as well, but the flavor is pretty bad! So, you either need to add juice or stevia/lemon juice/lime juice, etc.
  3. My doctor just prescribed CBD oil to help with sweating and possibly pain. I haven't started it yet. We also tried Marinol many years ago, but it made me SO dizzy!
  4. Hi Jan! Thanks for your reply! If my memory serves, you were a member many years ago when I was on the board a lot? I got a Schwinn as well! The Schwinn 270. I did a bunch of research and this bike seemed to offer the most bang for the buck. Emily
  5. Hello All! I spent more than a decade on DINET, but haven't been on for several years now! I'm back! Haha! I'm here asking if anyone has a type of recumbent bike (brand, seat style, etc.) that you would recommend. I did a search to see if there was already a thread on this, but only saw that many of you use recumbent bikes, but did not see a mention of what kind or where you got yours! Thanks SO much! Emily
  6. Thank you Rachel! I kept getting the R, and then got Richland and then...well, just wasn't sure! I Googled it today and it appears that it no longer exists as I couldn't get any hits for it or the Snowflake Foundation. xoxo to you and Corina! Emily
  7. Many years ago we had a member (a she may still be a member, as I have not been online much), who bred companion dogs. She had POTS and her family bred Newfoundlands and Boxers for companion animals. I cannot find the name of their farm or remember her name/username. Are there any 'oldies' online who might remember who I am talking about and be able to steer me in the right direction? THANK YOU! Emily
  8. I'm in shock!!! And soooo excited! Is this too good to be true????
  9. I tuned into the webinar live and it was extremely well-done. It is great for anyone...those newly diagnosed and those needing a refresher course. It is a chance to get some great information from one of the best specialists in the world.
  10. Thank you Nina! I just got this information and link from the CFIDS Association and thought it was helpful too, as it lets us know what the medical community is saying/doing. The Heart Rhythm Society has written to FDA about the hardship that removing midodrine from the market will cause to individuals with OI. You can read their letter at http://www.hrsonline.org/Policy/DevicesDrugsFDA/Drugs/FDA_Midodrine.cfm . We will be posting an alert on our Grassroots Action Center with a template letter to FDA on this topic. You will be notified about the opportunity to add your voice to others. I agree....we really made a huge effort when it comes to this! Thanks for all of your work!
  11. Thank you Wareagle for the update! I was wondering if anyone had any ideas as to whether or not it is helpful to contact the manufacturers (Shire OR the generics)? I have yet to do that and friends have asked about that option. Thank you!
  12. Oh, that DYNA Kids link is fantastic! Thank you! And thanks for the direction on what to tell people to do. My friends have been very generous in their efforts to call the FDA or email...so it is good to know that works!
  13. I am working on my letters and also working on 'directing' friends and family as to how to speak up. The squeaky wheel gets the grease, right? I got the automated reply from the FDA to my email, and noticed they had made a couple of changes to the letter. They are below. They have added in yet ANOTHER contact address. I am confused about what the best way is to make our voices heard. Is it to have people call, email the FDA, email the doctors, mail letters to the two doctors listed in earlier posts, OR send a letter to the address below. I realize that maybe some of us here on the board will do all of them, but I was wondering if anyone knew the best routes to direct friends and family. I think they would be willing to do ONE of the things. Anyways, here is the stuff that was added to letter and the new address they sent. Would love to hear your thoughts, Thanks! Although we cannot disclose the full regulatory history of this drug, we have exercised some regulatory discretion in retaining ProAmatine and the generics on the U.S. market for this long. Orthostatic hypotension remains an important problem for people who have it and we note that, even now, no FDA-approved alternative treatment exists to treat the condition. We appreciate your comments regarding the midodrine withdrawal. The Docket number for the FDA proposal is: FDA-2007-N-0475. FDA is monitoring the comments and will be discussing the potential impact of such an action as withdrawal. Written correspondence to FDA may be posted to the public docket (FDA-2007-N-0475). Send to: FDA-2007-N-0475 Division of Dockets Management (HFA-305) Food and Drug Administration 5630 Fishers Lane, Room 1061 Rockville, MD 20852 * Entitle your letter: A Response to the FDA proposed withdrawal of Midodrine (FDA-2007-N-0475) * Clearly and efficiently state your concern and ask your questions. * Be sure to provide your contact information. * Save a copy for your records.
  14. Thank you for posting Katherine! I loved the story. Also, the reviews, excerpts, and description on BN were really interesting... http://search.barnesandnoble.com/books/product.aspx?r=1&EAN=9781565126060&cm_em=rxs20@psu.edu&cm_mmc=Other-_-Other-_-100827_BN01_BNREVIEW-_-thesoundof
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