looneymom Posted October 5, 2015 Report Share Posted October 5, 2015 It's time for a Happy Post. I wanted to let this news out of the bag last week. Tyler has been on LDN for 9 weeks. This last week, his headache started dropping down again. He dropped from a 6 out of 10 pain level to a 3 and then to 0. I was too afraid to post because when he takes a shower and washes his hair, his headache usually get worse and his vocal tic starts up because of stimulation to his scalp. After shower and hair wash this weekend, his headache is still gone and his vocal tics did not start up while washing his hair. However, he still does have some scalp pain but it is much less. Tyler was started on the LDN because of his hypersensitivie skin issues, headache and severe scalp pain. However, I have noticed some other benefits of this medication. I don't know if I can give LDN all the credit but I feel like it's the main reason for my son's headache to be gone. Tyler has also been kept on another medication called Namenda. He started this medication in November 2014. His headache was at an 8 out of 10 pain level and did not drop down to the 6/10 pain level until June of this year. Namnda helps regulate NMDAR receptors which in return regulate Gluatmate receptors in the brain. My son has had the testing to verify the high glutamate levels. Through research I found an article from a pain management doctor that has used Namenda and LDN together. The patient had chronic pain issues and was able to wean off the Namenda and go to a lower dosage of LDN. Here is the article on LDN and Namenda.http://rsdadvisory.com/rsd-complex-regional-pain-syndrome-a-case-report-03032010-nancy-sajben-md/ Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 5, 2015 Report Share Posted October 5, 2015 Rachel,This is some truly amazing and inspiring news!! I am so happy for Tyler, and for your whole family! It must be so heart warming to finally see Tyler moving in a positive direction and reaching these huge milestones, after all of the stress of seeing his decline! I can't even express how happy I am for him!! (And, you, MamaBear!!) Quote Link to comment Share on other sites More sharing options...
Debbie Rose Posted October 5, 2015 Report Share Posted October 5, 2015 That is so great!! From one who has had daily headaches and migraines a few times a month I can imagine he is a totally different person !Fluronif seems to minimizing my headaches and some days have had NO H/A which is amazingSo great to hear he is doing so well. Will keep him in my thoughtsDebbie Quote Link to comment Share on other sites More sharing options...
gjensen Posted October 6, 2015 Report Share Posted October 6, 2015 This is wonderful news. I am truly thankful to hear this news. Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted October 6, 2015 Report Share Posted October 6, 2015 That's fantastic. What wonderful news ! Thanks for sharing. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted October 7, 2015 Report Share Posted October 7, 2015 So great to see a kid being able to be a kid again!!! Thanks for sharing! Quote Link to comment Share on other sites More sharing options...
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