New Daily Persistent Headache: My Story

By Iain (Guest Blogger) –

Everyone knows, for the most part, about migraines and how bad the symptoms are, but there are various other types of headaches that are just as debilitating.

One of the lesser known ones even among the medical community is called New Daily Persistent Headaches, or NDPH for short. NDPH is a primary headache disorder which means there is no underlying cause.

NDPH is a daily occuring headache that is not likely to ever go away. The usual course of treatment is to reduce intensity, but sometimes that doesnt even work. Not much is known why.

According to the MHNI, it may be because there are two subtypes. One is self-limited, meaning several months of high severity followed by several months of low severity, and the other is refractory type, meaning that the pain is almost always intense no matter what.

The symptoms of NDPH are similar to that of a migraine. They include nausea, light sensitivity, sound sensitivity and lightheadedness. The main difference between migraine and NDPH aside from its frequent daily occurrence is the location and type of pain, as well as a few neurological factors. It is usually a constant tension or pressure type of feeling across the forehead and temples.

One of the reasons I wanted to write this blog is to shed a light on something I have dealt with for 12 and a half years. It all started with an upper respiratory infection in 2005.

With this upper respiratory infection I had a headache. The infection went away but the headache did not. It still never has.

The doctors couldn’t figure out why it was happening. I never even got an appropriate diagnosis of NDPH until 2010. I have had many procedures and different treatments but the only thing that worked was a multi-disciplinary approach.

So what do I mean by a multi-disciplinary approach? Well for one, it’s not easy.

The patient is just as, if not more, responsible for how they feel as their doctors are. It’s a give and take. Just as with many chronic conditions, medicine only works if you as the patient are doing everything you can such as exercising, eating a healthy diet, and keeping a headache diary which would help indicate things that make it worse or better like food and weather.

Having a psychologist to help with coping mechanisms and discuss feelings of possible anxiety and depression, as well as a psychiatrist to prescribe medications are helpful methods of treatment too. It is mental as much as it is physical.

Take it from me. There is no one way to treat NDPH. It’s taken me 12 and a half years to finally implement everything I have learned from doctors all across the United States. I have personally been to two major medical facilities: the IMATCH program at the Cleveland Clinic and the Michigan Headache and Neurological Institue which also has an in-patient treatment program.

Hopefully this blog post sheds some light on this condition and educate people on the importance of a healthy lifestyle especially when dealing with chronic pain.

My goal is to share my story of personal growth, how living a healthy lifestyle can help make you stronger both mentally and physically, and that with the help of God all things are possible.

You can follow and learn more about Iain on his social media channels where he keeps his own vlog about health and fitness. Find him on YouTube, Twitter, Instagram, and Twitch.


9 thoughts on “New Daily Persistent Headache: My Story

  1. Natalya says:

    Can you post what has helped you manage the NDPH? My 10-yr old son developed headaches 2 years ago following tonsil and adenoid surgery. The surgery was needed as he suffered from chronic strep infections. Has been on just about every kind of migraine medication out there with no help. The pain is constant, just varies in intensity. Your thoughts would be appreciated, thanks.


  2. John says:

    I’ve had NDPH for almost 8 years now . It’s been very difficult and I haven’t had any success with therapies or treatments that have been provided. I’ve tried almost everything from acupuncture , botox, antidepressants, pain killers ,massage ,and more and now I’m at a point where its making me depressed and wanting to be alone more than social .
    I have been trying to figure out how I’m going to live with this for the rest of my life and that in itself is frightening . The pain is intense , its leaves me with bad brain fog and affects my vision …..My brain almost seems divided , a left & a right at times . Most of my pain is right between my eyes and wraps around my head and down my neck into my shoulders . Doctors have flat out told me there is nothing they can do for me which leaves you feeling helpless .
    Mine started after I took a pill and had a seizure and ended up in Emergency by ambulance. They diagnosed me as just a panic attach and I told them it wasn’t …for 6 weeks after that I could not watch anything visually as everything was racing at a high speed. I was unable to watch TV or drive a car .I stayed in bed with a blanket over my head praying it would stop .I had multiple panic attacks as a result and after 2 months I tried to go back to work which was extremely difficult .Fast forward 8 years and here I am …struggling to cope with it still and preying something anything will just give me a little relief . The heaviness in my forehead is brutal most of the time , people ask why I look so down . I don’t think anyone can understand what this is like other than those with it …. Life is definitely a struggle these days
    My doctor has tried to get me into a headache clinic but those around me are not accepting patients and I’ve been waiting for 4 years ….. I have now gone to a psychologist in an effort to learn to live in this state but to be honest it hasn’t been of any help
    I’m in good shape , a former National Level athlete , and I train most days but it doesn’t give any relief …. I’d be really happy to hear others that have found some type of relief and how you cope with the relentless pain


    • Luis says:

      Hi John, thank you for your post. I have been searching far and wide for information on this persistent and daily headache I have. My story: I’m 44. I was very athletic before. I competed and trained in various sports. The morning of July 30, 2018 I woke up, stood up and felt an odd discomfort behind my neck. That whole day I felt off. Within a couple of days I had continuous tension around my head. By the following week I had three episodes of a 10 out of 10 headache. These started with upper back muscle a spasms and behind the neck muscle spasms. These lit up every nerve on my scalp from behind the neck to just above my eyebrows. Awful away pain! For months I had head pain, vertigo and dizziness. Work was unbelievably difficult but, my then doctor said I would be fine and just crank up the amitriptyline. That was so not correct! I was not fine. A neurological labelled the headache possibly as occipital neuralgia. After all my research, however, NDPH seems a more accurate diagnosis. My symptoms crossover between those of tension and migraines. Symptoms I’ve experienced: headache pain, dizziness, vertigo, unsteadiness, fatigue, tingling on scalp, tingling in other parts of my body, head pressure, upper facial sensations like stiffness, nausea without vomiting, sinus stuff like feeling stuffed up, supermarket syndrome, this last one is bizzare and frightening, intense brain fog.
      Before these headaches I developed costochondritis in April 2018 from a flu at a time when I was dating someone. I do remember she had a pronounced cough that evening. That was the last time I saw her. I always wonder if there is a connection with the costochondritis and my headaches. Anyhow. As for how I deal with these headaches, amitriptyline got my through the intense pain, barely. My previous to put me on paroxatine for anxiety. Completely useless for me. I told him I have a headache. You stop my headache, there is no anxiety, not the other way around. I do find exercise helps. It keeps me sane at times I’m going low due to how emotionally draining this condition is. Hang in there buddy!


  3. Jennifer says:

    THANK YOU for posting! My fourteen year old daughter is eighteen months in and has had little relief. Her is the refractory type. I’m saddened to learn you’ve suffered for so long and fear her fate is the same. Began as a virus, her pain came on soon after like a bomb, and never left her. All my best to you onnyour journey. I hope you all find pain free days and years ahead. ♥️


    • Eliza says:

      Jennifer, I just posted tonight. My son is 15 year old and was just told this is what he has been fighting since Oct 22, 2018. Like so many, his headache followed a respiratory infection. You posted in Aug, 2018 and I am wondering how your daughter is doing? My son has 24/7 headaches which wax and wain. At school the headaches can reach a level 8/9/10 and he spends most of the time with his head on the desk. How did/are you guys handling school? Thank you for your response…..


  4. Eliza says:

    My son woke up one morning with a sore throat and sinus infection on Oct 22, 2018. He told me he had a headache. I assumed that the headache was from the respiratory infection. After 4 days, the infection went away but the headache continued. It started out as moderate pain then quickly turned to severe. If he is home and the house is calm, his headache is at a level 3/4… but after being in school for 30 minutes, his headache is at a level 8,9.10. He was /is spending most of his school day with his head on his desk. He always has some form of a headache but the intensity increases if he tried to concentrate or doing any form of thinking work. He just got out of a 5 day stay in the hospital trying DHE IV therapy, which is usually used to treat someone with a chronic migraine attack. He does get some relief from this DHE treatment but the headache comes back.
    Prior to this, I have never head of NDPH. The doctors recently stated that they think this is what he has. We are at a lost. We do have an appointment with the Children’s Hospital Headache Clinic ( my son is 15 years old) in March…. but everything that I have been reading is making me very sad and very concerned.
    Prior to Oct 22, my son was excelling in school, excelling on the wrestling mat, happy, hard working yet laid back kid….. He attends school everyday but takes numerous breaks in the sick room.
    To all the parents on this site, how is your child handling school with NDPH??
    We are trying to keep him following his normal life as much as possible but I am afraid if this continues, depression will set in.


  5. Eliza says:

    Parents of teens: Can you post how your teenagers manages school with 24/7 headaches which go up and down all day…. increasing to the point that they have to go lie down in a dark room.


  6. Julianne says:

    I had strep throat infection that lasted
    4 months. I had 3 prescriptions antibuotics and finally one injection of antibiotics. The headache started the day the strep throat did. It has now been 2 years since the gen onset of these headaches which I get daily. They usually start out mild and get worse as The day goes on till they are extremely painful each he night.


  7. Luis says:

    Thank you for blog. I’m 44. The morning of July 30, 2018 I got out of bed, stood up and felt a discomfort on the back of my neck. That’s when the headaches started. I never had a headache before in my life. The headaches vary in intensity. They were diagnosed as tension headaches initially but, also took migraine-like qualities. I was fit, ate well, etc. This is truly an awful condition. I am a shell of the person I was.


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