Connect
← Return to New Daily Persistent Headache
Discussion
Comment receiving replies
My 26 year old son was diagnosed with ndph at mayo Rochester 3 years ago (after misdiagnosis at hopkins) he suffers greatly and has had to withdraw from the PhD program he was enrolled in due to inability to stand in a science lab and inability to concentrate. 2 questions. 1 - he also cannot stand or walk without the assistance of a cane. He says he doesn't always know what the ground is like under his feet (level or uphill, etc) Do any other ndph sufferers have this experience? And 2- Are there support groups, for him, and for me and his dad?
Thanks
Replies to "My 26 year old son was diagnosed with ndph at mayo Rochester 3 years ago (after..."
Hello @darommom and welcome to Mayo Connect. I am sorry to hear of your son's debilitating headaches.
While I have not experienced migraines, I did some research on the American Migraine Foundation website and found this information regarding support groups, https://americanmigrainefoundation.org/understanding-migraine/why-you-need-migraine-support-network/
Perhaps some of our Members who have experienced NDPH will be able to respond to some of your other questions and concerns.
You mentioned that your son was diagnosed 3 years ago at Mayo Clinic. If you care to share more, how long prior to that did he have headaches? Is there anything that seems to trigger his symptoms?
I look forward to hearing from you.
Teresa
Connect
I haven’t found any support groups. I’d be interested in that info if you find any. As for vertigo, I experience it occasionally, but it’s either a brief, momentary thing like the world shifts a little (usually I’m sitting down) or a total lack of coordination, not being able to stand up or running into walls as I walk down a perfectly wide open hallway. I’ve always considered it part of the “migranous” feature of NDPH, and though it might not mean very much, my doctors haven’t contradicted that idea.
I’ve had NDPH since June 2010, and at first was diagnosed with chronic daily migraines. Then after a couple neurologist changes, I found one who labeled it NDPH. When I asked how he can be sure it’s not a migraine, he said “because it doesn’t respond to migraine meds.” I’ve just about given up on Western medicine, though I haven’t had any significant progress with Eastern philosophies- acupuncture or herbs- either. I’ve been on “temporary” disability since September 2010 and am constantly attempting to find a sustainable way to live that manages my pain but still keeps me involved in society. I’ve always been an ambitious and assertive person, and so not being able to accomplish much has been difficult.