New Daily Persistent Headache Support Group

I am amazed to find this group online. I recently decided to do some more headache research after a long break (I had become obsessed with trying to find some solution, but mostly ended up frustrated). So I'm really happy, after such a long time, to have stumbled upon a specifically NDPH support group, and to hear stories from people who know exactly what I have experienced!

My story: I woke up on a Sunday in Februrary 2002 with my headache. I'd have to look at the calendar to find the exact date, but I am able to identify it. I had been pushing myself kind of hard, partying and working a lot as a waitress. If I remember correctly, my headache felt a lot more generalized those first few days - almost like an 'aura' of pain that finally settled into a constant, dull, burning ache that has never gone away. I was extremely fatigued but also had a lot of trouble sleeping - it was so hard to relax with all that pain. My pain, in the beginning, waxed and waned, existing on a scale from about a 3-4 to an 8. As is typical of those with NDPH, I could go through a roller coaster of pain in one day (although I usually found that my headache was weakest right when I woke up in the morning).

To make a long story short, I have tried a lot of treatments and doctors (and also done tons of tests, all cool). What I finally found that helps is massage therapy in combination with Zonegran, an anti-seizure med that, I think, is similar to Neurontin. My neurologist decided to try it out (she didn't quite say why) and it really helped. Now, my pain rarely gets above a 5 or 6, and I spend many days where I don't get above a 3 or 4. I definitely wanted to mention the Zonegran because I hadn't seen anyone talk about it on this site yet.

I've also tried biofeedback, which was somewhat helpful...but also really weird because (and I didn't know this going into it) you work with a psychotherapist as part of the treatment. My guy was AWFUL and kept trying to tell me that I was at fault for my pain, wanted to explore my 'sexual trauma' (of which I have, absolutely, none)...he even suggested that I drop out of my M.A. program because it was making me think too much! Once I pushed aside his craziness, though, I was able to get some good stuff out of the actual biofeedback itself - like how to raise my perception of my bodily tension in reaction to pain.

One thing that is really interesting to hear on this site is that many of you have actually been diagnosed with NDPH. None of my doctors have ever mentioned it, even the supposed 'headache specialists' who would just look perplexed every time I told them my story. I have no doubt, though, that what I am experiencing is NDPH - the patterns are just too perfect and aligned with others' stories.

I do, however, experience significant neck tension, and my pain is all over my head, including my face and the occipital area. It is also more intense on the right side of my face, right above my eyebrow, which is an area that I fell on during a seizure episode and cracked open about six months before my headaches started. I don't know if that event is related (my doctors never seem to think it is). Even if the NDPH and the head trauma are unrelated, I suppose that that area is especially sensitive, so maybe that's why it hurts more.

Anyway, I guess that's it. I really appreciate everyone sharing their stories. It's just nice to know that I'm not crazy and didn't fabricate my pain. I'm sorry for everyone who has to experience this awful condition, and just want to encourage people to keep searching for a way to manage the pain. Doing so has made my life so much happier, and I no longer cry in frustration just hoping and praying that I'll wake up one day and my headache will be gone (but, of course, that would be nice!).

My story is very similar to yours. I've never had a doctor say, "you have NDPH". However, I was also obsessed with figuring out what was wrong with me. My headache started in April 2001, after a virus infection. I felt it was very odd that I had never experienced a headache before in my life, and now I had a continuous headache.

The doctors I went to in the beginning were unable to help. I went to one of the local colleges where I lived and was able to find a couple of articles that explained exactly what I had - NDPH. However, I was disappointed to learn that it is difficult to treat. I'm trying Effexor and Neurontin right now and am experiencing some relief.

Like you, I also find that my headache pain is less in the morning when I wake up. I am often able to reduce the headache in the afternoon by taking a nap or lying down for a while. I wonder if this is common among us.

I'm sorry you have to deal with this pain, but you have friends here who know how you feel. Welcome to the group.

Yes, Ryan, I am an avid napper! I experience significant relief after sleeping at least 8-9 hours at night and taking a nap in the afternoon. Any excercise that gets my heartrate up is great, too, and yoga usually helps, although sometimes it's too strenuous and wears me out.

Is Effexor a muscle relaxor? Just wondering - I tried multiple different kinds without feeling any effects, but I know they're all different.

Ryan my pain also began when I had a viral infection this is so bizare............

My pain began the day I got a Menactra vaccination and that night/the next day I came down with a viral infection. The doctors say that there definitely might be a connection but of course there's no way of knowing...

A pretty high percentage of people state their NDPH started either during or after an illness. Mine started after I felt strange for 3 days. I wasn't sick, but I felt like I was going to be getting sick, just felt weird, then I woke up with a headache and nausea, had both 24/7.

According to Li and Rozen, "Onset [of NDPH]occurred in relation to an infection or flu-like illness in 30%."

http://www.headachedrugs.com/archives/ characteristics_daily_headache.html

I think it's pretty crazy that NDPH turns on like a light switch with some type of triggering factor for most everyone who has it. We're then left struggling to find that switch which we inadvertently bumped into. Luckily, some of us have found a dimmer switch.

In response to Elisemarcel, Effexor is an anti-depressant (SNRI: Serotonin-norepinephrine reuptake inhibitor). I'm not sure why it helps, but it does for me. I take a small dose of 37.5 mg/day.

Exactly the way I felt achy, for a couple of days then had a spliting headache like my head was going to explode then had a fever like i was going to catch on fire followed by a spiral effect.....