Headache on the Hill Patient Advocate Spotlights: New Daily Persistent Headache
The stories of our advocates are the driving force behind what we do. We know that our stories are powerful and have the ability to bring about change by raising awareness, combating stigma, and even influencing policy. There are over 150 different headache disorders, we strive to shine a light on the lives of those affected, amplify their voices, and advocate for change. Below are some of their stories.
Joey M.
Las Vegas, NV
Living with New Daily Persistent Headache (NDPH)
“I started out with getting what I thought were migraine headaches for days or weeks at time when I was 15. This would result in frequent trips to the ER and then eventually hospitalizations because they could not get my headache to subside. I tried several treatments such as DHE, SPG blocks, nerve blocks, lidocaine injections, and every migraine medication under the sun. When I was 17 I went to a pool party on July 24 2016. At that party I started to feel very sick so I went to the bathroom and vomited in the toilet. After I lifted my head up I had an intense throbbing headache. I’ve had that same headache continuously for over 8 years now. As of today 9-18-2024 it’s been 71,424 hours straight of non-stop debilitating pain. I have had to adjust my entire lifestyle around what I can and cannot do with this condition. From wearing sunglasses inside, to missing family gatherings and events, to not being able to finish high school in person, and having my life revolve around doctors appointments. This condition is called New Daily Persistent Headache or NDPH. Only 30 to 100 out of every 100,000 people have NDPH making it extremely rare. That’s about .03% to .1% of the population. It’s a very discouraging condition because the majority of people that develop NDPH, the headache never leaves them for the rest of their life.
I’ve been on a constant chase looking for an answer, the farther I go down the rabbit hole the more things I find out about my health. For example in 2021 I discovered after being in a car accident that I had cranial cervical instability. My measurements were so severe that I was at risk of paralysis from the neck down. So they performed a cranial spinal fusion surgery, fusing my skull to my spine and also fusing C1-C2. The surgery was only supposed to take 4 hours but ended up taking 7 hours due to other areas of my spine being out of place and degenerated. My jaw was dislocated for the entire duration of the surgery causing my pre-existing TMJD to flare up so bad that when I awoke from the procedure I could not speak, swallow, or chew. Walking was out of the question for weeks and took a lot of physical therapy to get back on my feet.
I personally have felt the need to talk about this issue primarily for two reasons. The first being that since it’s an invisible disease, we have to raise awareness so others can see the effects it’s having on people’s lives. Unless it’s affecting you or a loved one it’s often turned a blind eye to. Secondly, not many men talk about this issue or any health issues they have because it’s shamed upon in our society. There is a stigma that men should be strong and not talk about their physical or mental health. But one of the strongest things a person can do is have to battle through a war with their own body. I can’t tell you how many times I’ve heard from people that it’s just a headache. It’s not a headache, it’s a debilitating disease that we suffer in literal darkness, often confined to our rooms.
Music has been my medicine throughout the years, it’s something I can do by myself and without any lights. It can also be extremely quiet when you’re playing an electric guitar unplugged. This has been the way I have had some identity throughout the years other than being a “sick person”, I am a musician. It’s given me the strength to occasionally go up on stage and perform. Even if that means laying in bed for the next three days from the aftermath of putting on a show and pushing my body to its limit. I want to prove to other migraine sufferers that they’re capable of more than they know and that I, along with several others, see them for the warriors they are. Until recently I was very confidential about my illness. I want to make them feel less alone, showing them that I’m willing to walk side by side with them. Even if I have to come out and put myself in the public eye and show my struggle.
The journey has been a difficult one filled with potholes, stop signs, and road blocks. It’s hard for people to really understand what I’m going through when they look at me and see someone that looks completely healthy. They can’t wrap their head around what’s going on especially when I’m often smiling through the pain. But my facial expression is just a mask, because it’s easier to pretend to be okay than to try and explain my situation. Not even certain medical professionals like doctors, nurses, technicians etc. take it seriously.. Most of them haven’t even heard of NDPH. Despite 39 million people in the United States suffering from migraines there isn’t much funding put towards these types of headaches. Often looked at as an “incurable disease,” but something is only impossible until it’s accomplished. History has proven this time and time again.
My hope for migraine and headache patients is that we have increased awareness around what someone with these conditions is going through. This is not your typical headache you have when you’re dehydrated. The severity of pain that these people are suffering through is grossly understated. I also hope that by raising more awareness we can have more medical professionals join the industry because there is a huge gap between the amount of doctors in comparison to patients that we have.”
Alan K.
Baltimore, MD
Living with New Daily Persistent Headache (NDPH)
I have had New Daily Persistent Headache going on 7 years. I started NDPHaware after realizing there’s no effective FDA approved medicines and a lack of research into causes and treatments for NDPH.