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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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This is very helpful. Thank you @dhramsey for sharing. We now have a list of other medications to try.
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1 Reactiondon't know if this will help or if I'm overstepping boundaries. I was a Psych nurse all my working life and worked nights with a nurse who's husband was classed as disabled due to headaches constantly and I mean non stop. After many yrs and I mean about 20yrs of back of forth to Dr's appointments and different hospitals in different parts of the UK he has been fitted with an appliance of sorts in his brain. First he was found to have too much blood or too thick blood ( not sure what that was or what it's called) so he would have blood drained at times. Now he is just waiting till the swelling goes down as he only just got the surgery.he will then have it switched on and the computer will collaborate what impulses he needs.Might be worth doing your own research.
do you happen to know the name of the device ? I am assuming this was done in the UK ? NIH
Hello I was diagnosed with NDPH two months ago, I remember the day that my headache began accompanied by photophobia dizziness and blurred vision, I have taken tegretol, sumatriptan fluonarizine, tizanidine, luvox, sertraline, clonazepan. Nothing has helped me, just going on a trip and the days after returning from the trip, the pain returned for a month. Already two neurologists have diagnosed me, the last one prescribed me pregabaline 75mg, magnesium and calcium.
How is your daughter today?
My daughter is the strongest member in our little family.
I’m 100% sure she is!
My daughter is 16 and just hit three years with NDPH. She’s my daily inspiration.
That so nice to hear. usually around that age daughter's don't want to be around their parents no more. But my daughter does then god. I'm not asking for your actual address but what state do you live in
I don't know anything about headaches but I do know pain meds. Narcotics need not be addictive if used properly. If you don't get high you should not get addicted. I use them and am not addicted. 20 some years. I have an interthecral pain pump. I get 3.5 mgs. Of Dilaudid per 24 hours. Meds delivered this way are up to 300 more times affective. I get my pump refilled every 12 weeks. I still have pain but It's very bearable. Large oral doses, 260 mgs. per day were no longer affective for my pain. It's are getting easier to find Docs who do them. Check it out.
Wow, that’s quite the line up of meds. Interesting enough, I’ve arrived at something similar but less complete.
I was prescribed venlafaxine instead of cymbalta. I had to quit it pretty quickly because it caused extreme insomnia. Do you feel like the cymbalta is an important factor? It’s pretty similar to venlafaxine, so I was debating trying it and risking the same side effects. But if it is really providing you with significant relief, it may be worth revisiting.
About the blood pressure bucket: what is your normal BP? And I have been afraid of trying any beta blockers because I already have symptomatic low BP. What are your thoughts on these meds in particular?
For me, rizatriptan might as well be a tic tac. It has no effect at all. I do take tizinadine and cannabis to sleep during bad spells. I usually live around a 4-5 but I get attacks that last a couple of weeks at a time that go up to 8-9.
Topiramate is my anticonvulsant of choice. 200/mg per day. I don’t have any of the side effects people usually complain about.
How did that CGRP therapy turn out for you? It’s been a year since your post.