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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 had a daily persistent headache for 2 years. Been treating at Jefferson Headache Center in Philadelphia for 6 years. I have had every medicine available, 6 neck nerve blocks, 4 spinal blood patches with glue, 78 Botox, along with infusions and a 5 day hospital stay running migraine meds. Nothing works. Can anyone comment. I have been on the couch for 2 years.
Mikayla
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3 ReactionsRemember, under no circumstances should you receive any pain meds. All pain is curable by CBT (cognitive behavioral therapy). I have been told this by several neurologists. Please sign up for an Intensive Outpatient Program to learn to live with your pain. They last 8 hours a day and can last for a month but only weekdays. Please research your local hospitals that offer mental health programs.
@mikaylar Has anyone looked at what you are eating and drinking? I had debilitating headaches for 2 years after brain surgery and figured out on my own they were being caused by the aspartame I was getting in a packet of Equal in the morning and a diet pop in the afternoon. I quit using aspartame in my coffee and quit drinking diet pop. My debilitating headaches ended the next day. Seriously. From keeping a headache journal, I identified my other headache triggers, such as hormones in nonorganic chicken, nitrites in bacon, ice cream, red wine, and the weather. I couldn't control the weather, but I could avoid these other things. I really hope you can find relief...I too spent days on the couch doing nothing, i.e. anything I could to avoid getting headaches. Take care! Nancy
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2 ReactionsMarko82 here. I'm glad you figured out on your own that aspartame and other artificial sweeteners are problematic. Years ago a Dr told me to stay off all "diet" foods - that they were poisonous. I am very lactose and have diet-controlled Type II Diabetes (age relates) (Metformin and glypizide made me sick) so NO dairy and few carbs.
I use AGAVE syrup as a sweetener because it is natural and non-glycemic (doesn't raise my blood sugar). I use truvia or stevia for the same reason. Finding out what's causing or helping your conditions is a major step. I'm taking sports minerals and electrolytes + a 30mg zinc cap every day. My vibrations are much less - hardly noticeable sometimes.
Good Luck.
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2 ReactionsThanks for the tip!
Tx Nancy. I think my headache was triggered by a surgery 2 years ago. Thing is, now the headache is triggering other health issues. If you are on the couch, you know how the body doesn't like it.
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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1 Reaction@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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1 ReactionI feel for you, my friend. This is so debilitating. People have no idea what we are going through. Have you treated at a headache center?
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1 ReactionI 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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