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New Daily Persistent Headache
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.
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I have migraines not the ones that you all do. I’m only chiming in to make a suggestion about migraine meds. I take Amerge/Naratriptan generic. It’s not as well known however it’s not new and it’s the only medication that even touches my pain. It is just a suggestion as most people seem to use Imitrex. Gods speed. Diane.
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1 ReactionI have had headaches almost daily for 27 years. I usually wake up every morning with one. I started having them in the 3rd grade and would throw up on the school bus. I have horrible allergies which cause sinus induced headaches. Sinus infections cause pressue headaches that go into migraines. Growing up, Mom called them 'sick headaches'. In my teens I was diagnosed with migraines. In 1995 I was diagnosed with Fibromyalgia and have had these headache almost daily ever since. They can go into migraines. Barametric pressure changes definitely affect them. My heart goes out to all of you. I empathize. I have had to learn to live with them. God bless each of you.
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3 ReactionsThat sounds so much like my life. I've had migraines and sinus headaches frequently since childhood. I was diagnosed with migraines in my early twenties. I was in a car accident and have multiple herniations in my spine. I had a cervical fusion which helped with some of the neck and head pain briefly. I have more recently been experiencing migraine associated vertigo, and many other symptoms that have been labeled Fibromyalgia (only after numerous tests including EMGs, MRIs, Skin Biopsy, Bloodwork).
Best of luck to you all in your health journeys,
Kat
You too Kat. There is a great connection with chronic headaches/migraines and having fibromyalgia. I get the vertigo as well with migraines sometimes. Praying for you and I am so sorry you are battling all of this. You have a lot more on your plate than I do. Bless you.
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1 ReactionThank you! I hope all who suffer with pain find the rainbows in the rain storms. I try to stay positive. I have two children to raise. Every day I can take care of my family is a good day. Best of luck to you all!
Kat
I hear you! I have the same headache...every day for 52 years. 🤗❣️
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1 ReactionBless you. Praying for you.
Please don't pray for me, that's the exact same thing as doing "nothing". But thanks anyway! 💕
Does anything help reduce the pain? Do the improve at all or stay the same? My headaches are migraines that improve to a dull pain and get worse to disabling symptoms and pain.
Best of luck to you all,
Kat
I take a triptan for mine. It's called Zomig and it works within about 30 min. It does make me sleepy. If I can sleep off the migraine with a heat pack, I usually will be completely migraine free in about an hour. All of my headaches are not migraines. Presently I am taking B2 to see if it will help to eliminate migraines. I've just started on it, so I will keep you posted. I also take 200 mg of Magnesium a day to help with migraines. I hope this helps.
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