Share this:
vincenco

Hi, I've only been recently diagnosed with NDPH. I've had it for

Posted by @vincenco in Brain & Nervous System, Apr 15, 2013

Hi, I've only been recently diagnosed with NDPH. I've had it for over 10 years though. I may be lucky, because I have had some success with some early treatment since I have been diagnosed. I've found some help on Facebook in a private NDPH group: https://www.facebook.com/groups/94222274850/ Also, I have been following on MD Junction: http://www.mdjunction.com/ndph. The people seem really friendly and helpful in both places. There are other parents of children with NDPH as well that may be able to help. Hope this helps! I hope your daughter finds the right treatment soon. @mmccoy1

mmccoy1

Posted by @mmccoy1, Apr 16, 2013

thank you for responding. would you mind telling me what treatment was successful for you? We have tried numerous things and have had very little, if any, relief. She had some temporary relief during a hospital stay at a headache clinic, but is just as bad and getting worse again since we've been home. They just switched her to Keppra, and is also taking Verpamil as preventives. I'm not sure what was helpful in the hospital, DHE didn't seem to have much effect, but the Keppra by IV may have actually helped a little, hoping the pill form will build up and begin to help. What do you use for abortives? Her case might be different as she is only 13, and also has asthma, so we have to be careful. She's had 4 allergic reactions already to medications. I can't believe you've had this for 10 years. Have you had any pain free days during that time, or do you now with new treatment? Best of luck to you. Please let me know if you find something that is helpful to you.

Please login or become a member to post a comment.