“In the last few years, New Daily Persistent Headache (NDPH) has been recognized as a distinct primary headache syndrome. Primary headache disorders are those for which there is no underlying secondary cause that can be identified.
It is characterized by continuous daily head pain, varying in intensity, and sometimes accompanied by some migrainous symptoms. NDPH is unique, however, in that many patients can tell you the exact date when their headache began.
The diagnostic criteria of NDPH are as follows:
A. Headache for more than 3 months fulfilling criteria B–D
B. Headache is daily and unremitting from onset or from less than 3 days from onset
C. At least two of the following pain characteristics:
1. bilateral location
2. pressing/tightening (non-pulsating) quality
3. mild or moderate intensity
4. not aggravated by routine physical activity such as walking or climbing stairs
D. Both of the following:
1. no more than one of photophobia (increased sensitivity to light), phonophobia (increased sensitivity to sound) or mild nausea
2. neither moderate or severe nausea nor vomiting
E. Not attributed to another disorder
Headache may be unremitting from the moment of onset or very rapidly build up to continuous and unremitting pain. Such onset or rapid development must be clearly recalled and unambiguously described by the patient.
Many doctors consider NDPH to be the most treatment refractory (not responsive to treatment) of headache disorders. Unfortunately, NDPH can be very disabling because it often does not respond to preventive or abortive medications.”*
*http://www.healthcentral.com/migraine/types-of-headaches-41643-5.html
It’s my birthday today. Back in February, when my headache was in its early stages, I once thought to myself ‘I wonder what I will be doing on my birthday - by then I will surely know what has caused the headache’.
So in a way I have been looking forward to this day, not because it is my birthday as such, but because for the past few months I have convinced myself that by August I would definitely know where the problem lies.
When reading about Hemicrania Continua, I also came across another condition called New Daily Persistent Headache (NDPH) which also appears to be similar to what I have.
In 2002, the largest study of New Daily Persistent Headache to date was conducted, based on 56 patients from the Jefferson Headache Center in Philadelphia. For me, the most interesting point from the study was that 82% of patients were able to pinpoint the exact day their headache started.
Given that I remember the exact date of the onset of the headache, and that the symptoms described above are also frightfully similar to what I have, this is certainly also another condition I need to look into. What I appear to be inflicted with is a mixture between Hemicrania Continua and NDPH.
So in a way I have been looking forward to this day, not because it is my birthday as such, but because for the past few months I have convinced myself that by August I would definitely know where the problem lies.
When reading about Hemicrania Continua, I also came across another condition called New Daily Persistent Headache (NDPH) which also appears to be similar to what I have.
In 2002, the largest study of New Daily Persistent Headache to date was conducted, based on 56 patients from the Jefferson Headache Center in Philadelphia. For me, the most interesting point from the study was that 82% of patients were able to pinpoint the exact day their headache started.
Given that I remember the exact date of the onset of the headache, and that the symptoms described above are also frightfully similar to what I have, this is certainly also another condition I need to look into. What I appear to be inflicted with is a mixture between Hemicrania Continua and NDPH.
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My headache started April 10, 2011 and to this day May 16, 2012 there is not a day I don't have some type of headache. It goes to tolerable to intolerable that I can't function. And for bonus my headaches come with flu like symptoms, nausea, dizziness and body aches. I have FMLA for work, however that is not going to last long. Sometimes I push myself and go into work in fear of losing my job. I have been to severe doctors and tried several different medication which nothing has worked. I had outpatient infusions and inpatient infusions and I have had nerve blocks. Nothing has worked. Doctors don't come out and say it but they give up on me. I am hopeing this will go away as misteriously as it came. Is this possibly? I just want to live a normal life. I know there are people have it worse, but I love my job and I don't want to give up my job.
ReplyDeleteDear anonymous
DeleteI am sorry to hear that nothing has worked for you and that your pain is interefering with your job and also you life as a whole. I can empathize with you. My NDPH started on January 5th, 2000. It didn't have a name back then. All I can tell you is that it is worse at the beginning. It takes a while to get used to the pain, but I hope that you can in the meantime. I am not saying that it will last for as long as mine has. I have heard about patients whose pain only lasted a few years. My advice now is to try to turn down the volume on the pain. I am sure you have heard this before but to drink at least 100oz of water a day, limit caffiene usage for 12.5mg per day, exercise when you can, and get regular sleep. Do I follow all of these to a t? No, I don't. Its hard to find time or energy. By the end of the day you feel worn out. It seems impossible to find the energy to even go for a run.
The point is that life can go on and that you can really accomplish things in life, but you may not feel great doing it. I just finished my undergrad and am currently in grad school. I am 12 years of unrelenting pain and counting. Don't give up my friend and don't give up hope. I will be praying for you.
Hello to all, My name is Sarah. I am 30 yrs old and my NDPH arrived on Apr 11, 2009 after a bout of the flu. I hate to agree with the previous comment, but you will 'get used to the pain'. Its scary to think we will be dealing with this 10-15-30 + years down the road, but the only thing that keeps me hopeful is that we are putting our stories out there, supporting each other, and not letting the medical community push us away. I cant tell you how many treatments I have tried, I lost track, and none have worked. I have never had a pain free day. I go through stages that are good and I can function and work and participate in life, and other stages, like now, where I can barely get out of bed every day. Thank God for my mother, the only person who always supports me and never questions my condition. Not only do I live with NDPH but over a year ago I started getting severe migraines also. I have had over 20 in any given month more times than I can count. And recently I have developed occipital neuralgia, which sends electric shock type pains through the back left side of my head. Its all such a mess of a problem. My best advice after 3.5yrs is dont give up. Dont quit fighting or looking for the answer. Science will catch up to us just like it does with other conditions. Keep your chin up and make the most out of each day, as best you can. I just started a blog to help me in my battle and hopefully put some info out there that will help others. Please join me if you would like
ReplyDeletehttp://ilivewithndph.blogspot.com/