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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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

mikaylar | @mikaylar | Aug 5, 2021
In reply to @rt061069 "I did the diamond headache clinic way back in 1999. Didn’t do anything. Tried an maoi..." + (show)
@rt061069

I did the diamond headache clinic way back in 1999. Didn’t do anything. Tried an maoi inhibitor which didn’t do anything. Tried a few new drugs back in 2016 after new diagnosis but didn’t help. Live with it but main issue I have now and had bad for two years is abdominal pain which like headaches nothing much works. The headaches I figured how to live with, stomach pain haven’t. Daily Chronic pain is the worse thing medically ever.

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Yes, I have to agree with you there. It's like a slow death! Hang in there and keep praying.

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bluej | @bluej | Aug 6, 2021
In reply to @rt061069 "@mikaylar I also have had daily headaches for 22 years. They never could figure them out...." + (show)
@rt061069

@mikaylar
I also have had daily headaches for 22 years. They never could figure them out. It’s always at least a level 2 and avg a 4 but can get to a 9. Drugs never helped me. Only real thing that helps when they get bad is ice packs. The gel ones you keep in the freezer. I have various size ones. I get driller points as I call them under the eye brows, forehead and back of head and neck. I lay sorta upright and put one back of my lower head and neck and one over my eyes. They usual will bring them down though sometimes I suffer them at a 5-6 the whole day. I just had one of the worst ones a few nights ago which woke me up at 4 am. Had to go get ice packs.

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Have you done sleep studies and been seen by an oral surgeon? TMJ and Apnea can cause severe headaches.

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1 reply
mikaylar | @mikaylar | Aug 7, 2021
In reply to @bluej "Have you done sleep studies and been seen by an oral surgeon? TMJ and Apnea can..." + (show)
@bluej

Have you done sleep studies and been seen by an oral surgeon? TMJ and Apnea can cause severe headaches.

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Sleep study up next. Thank you.

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mazeppabob | @mazeppabob | Aug 7, 2021
In reply to @nla4625 "This is actually what I think happened to me, i.e. my brain surgery changed my brain..." + (show)
@nla4625

This is actually what I think happened to me, i.e. my brain surgery changed my brain chemistry so it was sensitive to and negatively impacted by things which it hadn't been before, primarily aspartame. If you aren't keeping a headache journal, I really urge you to. When I got a headache, I wrote down what I had eaten or had to drink a hour before, what I had been doing, what the weather was like it, etc. Patterns started to appear. My Mayo Clinic neurologist recommended taking Excedrin when heavy duty prescription pain pills weren't working and for me they were a miracle. By eliminating my triggers and taking Excedrin, I got my life back. However, please note I was taking them under a doctor's supervision and do NOT recommend you try them without a doctor's recommendation. I didn't understand a previous post about not taking any pain pills, frankly...maybe the poster meant opiates?...but please consult your doctor if you want to try Excedrin. Good luck! Nancy

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@mikaylar
I also found that Excedrin was the only thing that would help my morning headaches but only if I took it at the onset. If I waited too long then not so much.
Another thing I discovered on my own that was a major help and possibly the cause of the headaches. I started rolling on my back on a 6-inch foam roller. From the neck down to mid-back. The very first time I heard a few clicks which I assume were vertebra going back in place? The morning headaches are gone.
I still get headaches if I sit at the computer too long or fall asleep in front of the TV. The weight of my head bent forward stresses the muscles up the back of my skull. Apparently, your head weighs the same as a 14 lb bowling ball.

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1 reply
mikaylar | @mikaylar | Aug 7, 2021
In reply to @mazeppabob "@mikaylar I also found that Excedrin was the only thing that would help my morning headaches..." + (show)
@mazeppabob

@mikaylar
I also found that Excedrin was the only thing that would help my morning headaches but only if I took it at the onset. If I waited too long then not so much.
Another thing I discovered on my own that was a major help and possibly the cause of the headaches. I started rolling on my back on a 6-inch foam roller. From the neck down to mid-back. The very first time I heard a few clicks which I assume were vertebra going back in place? The morning headaches are gone.
I still get headaches if I sit at the computer too long or fall asleep in front of the TV. The weight of my head bent forward stresses the muscles up the back of my skull. Apparently, your head weighs the same as a 14 lb bowling ball.

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My headache is constant all day for 2 years. Never had it a day without. I had surgery and I read 9% of people will get a headache after surgery which will last 2 years OR MORE!! I get dizzy and almost faint in the mornings. My body is getting so weak from lying on the couch. I have no life; I just exist.

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bsrice | @bsrice | Mar 7, 2022

Hopping on this group to see if still active. Clinically diagnosed with New Daily Persistent Headache and Central Sensation Syndrome as a result of 2nd Covid vaccine. Really focusing on headache, as that is what drives my life right now.

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1 reply
crittercaregal | @crittercaregal | Mar 8, 2022
In reply to @bsrice "Hopping on this group to see if still active. Clinically diagnosed with New Daily Persistent Headache..." + (show)
@bsrice

Hopping on this group to see if still active. Clinically diagnosed with New Daily Persistent Headache and Central Sensation Syndrome as a result of 2nd Covid vaccine. Really focusing on headache, as that is what drives my life right now.

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Exactly what I've been suffering but get the feeling there's not a provider who will dare make the connection!

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miho | @miho | Mar 9, 2022

Hello I to have ben suffering from headache's for over five years,IT SUCKS, I have ben seeing a neurologist tried all types of meds. nothing seems to work, also saw a TMJ dentist ,not TMJ never heard of NDPH cold packs help have you heard of theraICE Rx they make a whole head ice pack that that helps, it wraps around the head ,space for no ice. on the ear's they make many types of ice packs I hope this info helps friendly George

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marye2 | @marye2 | Mar 10, 2022

Sometimes EFT tapping, and gentle massage of head help--you have soft tissues and tendons. Make sure you also stary hydrated. Sometimes I find that CBD ointment helps if it is on my forehead or temples. Cool packs help too. https://www.youtube.com/watch?v=w8uH9c5WpX0

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1 reply
mikaylar | @mikaylar | Mar 11, 2022
In reply to @marye2 "Sometimes EFT tapping, and gentle massage of head help--you have soft tissues and tendons. Make sure..." + (show)
@marye2

Sometimes EFT tapping, and gentle massage of head help--you have soft tissues and tendons. Make sure you also stary hydrated. Sometimes I find that CBD ointment helps if it is on my forehead or temples. Cool packs help too. https://www.youtube.com/watch?v=w8uH9c5WpX0

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I've had NDPH for 2 years/8 months every minute of every day. Going for PT for Vertigo today as now dizziness is worsening. This is dreadful. Why can't they figure this out? Mikayla

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