New Daily Persistent Headache

Posted by llee @llee1, Dec 1, 2011

I was diagnosed with New Daily Persistent Headaches at Johns Hopkins headache clinic in Baltimore last August. I am hoping to find more information on these kinds of headaches. I have found very little actual research information on them, and some of the information I have found is inaccurate.

The first neuro I went to must not have been familiar with this type of headache, as I have all of the symtoms, but he never diagnosed me with NDPH. For those of you unfamiliar with this type of headache, let me tell you what I do know. First of all let me say that I got a headache the first week in June in 2010, and it has never gone away. It does not always hurt in the same place, or in the same way, or to the same extent. That makes it nearly impossible to describe to a doctor because it sounds crazy. I kept apologizing to my first neuro for not being helpful when he asked questions, and I gave him this bizaare set of answers. Finally being correctly diagnosed was huge to me. At least I knew what I had and that there were other people with this type of headache.

The headache pain goes from moderate to severe; I often have migranous headaches but migraine meds do not phase NDPH. NDHP are not migraines. It would be nice to have migraines where at least most people have some type of success with medication. I have easily tried 40 different medications. My doc at Johns Hopkins said that this is the most difficult type of headache to treat; less than half of all sufferers ever find any kind of medication that will ease the pain. For bad and really bad days I have to take oxycodone or apply a fentanyl patch. Not only are these substances highly addictive but they also cause rebound headaches which are far worse than the orginal one was. Most days (and nights) I just try to get through them. I don’t really have any options.
I was an English teacher. Last year I had to take 6 months off. I went back this year, but I only made it though the first quarter. I am on short-term disability now with no option to return to my job of 29 years.

I would love to see discussion of this type of headaches on the board! I also wanted to post this in case anyone who reads this may be suffereing from this type of headache. To be classified at NDPH, the headaches must have been continual for at least a 3 month period- no time at all headache free. They say that 80% of people with these headaches can tell you the exact time they began. Have you been give a lot of different medications and none of them phased your pain? It seems like a lot of doctors don’t know anything about this headache. Both my GP and my first neuro were clueless. They may need you to educate them.

@bostonsanfran

I joined Mayo Clinic Connect just to jump on this board. I’m 50 years old. Until exactly one year ago, I almost never got headaches. Then out of the blue, I began getting painful headaches every day at the same time in the afternoon. They last for many hours – usually until I fall asleep at night. The pain is bilateral, deep in my head, and constant (not throbbing). I get them at work, on the weekends, and even during relaxing vacations. The only thing that varies is the intensity. More recently, tinnitus (ringing in the ears) sometimes accompanies the headaches. The tinnitus seems to be aggravated by NSAIDs like ibuprofen. Recently had a brain MRI that showed a brain cyst that was supposedly “normal.” Don’t see a neurologist until next month. I’ve tried eliminating caffeine, alcohol and even went gluten-free for several months just to try and isolate a trigger. I’m athletic and fit – so not much more I can do on that front.

I was amazed at how NPDH symptoms exactly match my own. While comforted to not be alone, I’m also discouraged to hear how unsuccessful treatments seem to be. I fear this is my new normal. I’ll post back next month after I meet with my neurologist. Any advice is appreciated.

Jump to this post

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

REPLY

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.

REPLY
@ldyk

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.

Jump to this post

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.

REPLY
@ldyk

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.

Jump to this post

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

REPLY
@ldyk

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.

Jump to this post

@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.

REPLY

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.

Liked by stfnwtl89

REPLY

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

REPLY

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

REPLY
@johnbishop

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

Jump to this post

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.

REPLY
@darommom

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

Jump to this post

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.

REPLY
@darommom

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

Jump to this post

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

REPLY

My wife has constant daily head pressure/headache for several months. We believe it may be NDPH, which was suggested by an ER doc – but her current neurologist (#3) believes it is instead a pinched nerve and that surgery on the cervical spine may offer some relief. An odd feature of this is that she feels tactile sensations (floating pieces of metal) in her mouth that cause her a great deal of discomfort as well. We have not heard of anyone experiencing that with NDPH, but we wonder if the pinched nerve might be causing it as well. We would welcome hearing from anyone else who may have a similar experience.

REPLY
@corxdv

My wife has constant daily head pressure/headache for several months. We believe it may be NDPH, which was suggested by an ER doc – but her current neurologist (#3) believes it is instead a pinched nerve and that surgery on the cervical spine may offer some relief. An odd feature of this is that she feels tactile sensations (floating pieces of metal) in her mouth that cause her a great deal of discomfort as well. We have not heard of anyone experiencing that with NDPH, but we wonder if the pinched nerve might be causing it as well. We would welcome hearing from anyone else who may have a similar experience.

Jump to this post

Hello @corxdv, welcome to Connect. I moved your discussion and combined it with an existing discussion on New Daily Persistent Headaches. I did this for a couple of reasons, one so that you would have the chance to read through some of the previous posts from members on this diagnosis and two, so the members already discussion this diagnosis would see your message. This discussion was started some time ago, but it has been recently active, so if you are reading from the beginning do not be thrown off by the date. If you are responding by email, I suggest clicking on VIEW & REPLY so you can see the whole discussion from the beginning and you can participate where you feel comfortable.

@corxdv, you mentioned that your neurologist thinks that surgery is a viable option. How comfortable are you and your wife with that and is the neurologist confident that will help? I only ask because surgery on the spine sounds intimidating.

REPLY

I had NDPH for more than 3 years, going from one headache clinic to another. Nothing worked. When I was about to give up, I found a doctor at University of Chicago Hospital who prescribed Lyrica. After a few months, my pain level dropped down from 8 to 4. The headaches eventually went away. But, there were horrible side effects (anxiety and IBS issues). The doctor's name is Richard Kraig. I hope this information will help you. I went through hell trying one medication after another. I remember being on 8 different prescriptions at the same time. I even gave serious thought about suicide. But, I got lucky and found the right doctor with the right medicine.

REPLY

I don’t know your particular headaches but having suffered from migraines most of my life and not having them for the last two years might help you too. Try a different diet -DASH and drink 64 ounces of water a day. Salt level and dehydration wet causing them. Stay away from tv, computer and phone screen. Limit stress and get at least 6 hours of sleep. I hope it helps.

REPLY
Please login or register to post a reply.