New Daily Persistent Headache

Thank you, I'm not very good at this I feel very out of my element. Took me a long time to start to say anything. It's just hard when I see people in similar circumstances to myself looking for answers that I might have a tiny tidbit that would help. I know I would appreciate that and if I can do anything to help, that wouldn't make me feel like what I go through, isn't without reason.
Jennifer

I was diagnosed with this about a month ago at Mayo and was wondering what others have done for this- I have a pressure headache everyday and sometimes being at work can be very hard and trying to do my normal stuff Is hard- any suggestions would be very helpful.

Hello @ldyk, welcome to connect. I combined your discussion on NDPH with an existing discussion on the same topic. I did this so you could meet the many members discussing this diagnosis already. If you are replying by email, I suggest clicking on VIEW & REPLY so that you will be brought to the new discussion. I suggest reading through and jumping in where you feel comfortable.

I don't see view and reply- where is that at? Thanks

@ldyk, the VIEW & REPLY button is only seen in the email notifications towards the bottom of the message. I usually use this function because once you click on it, it will take you directly to the reply on the Connect website, and it makes it much easier to find where you are in the discussion.

I am sorry for your pain. Over 25 years ago I began having severe headaches. My GP did nothing to help. I finally went to a neurologist and was admitted to the hospital that evening. The DX was migraine which just didn't seem right to me. It was then suggested by my neuro that I see another doctor who happened to be "outside the boys' club". After a series of questions and blood work-up, I was finally diagnosed with Lyme Disease. It took over a year of antibiotic treatment until I was better. My neurologist had given me the best advice, i. e. "keep on going until you find the answer and don't let any doctor say you're a hypochondriac!" Good luck.

Anyone have migraines?

I ran across an interesting Mayo Clinic article on a new device to prevent migraine attacks. I thought some of you might be interested.

Mayo Clinic Minute: New device can prevent migraine attacks
— https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-new-device-can-prevent-migraine-attacks/

John

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

I know this may sound dumb as it didn't help me who also gets migraines...however I do want to say my hub was getting 2 times per week minimum. He was taking 50 mlgrms of name brand Imitrex. The neuro Dr. said he wasn't getting enough oxygen breathing at night. And tested him, landed up getting a cpap machine. I was ticked off thought Dr was wrong...guess what? He was right. Once in a blue moon he gets them now. So if you get sleep apnea investigate the possibility. Worth a try.

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.