But, re: Magnus's idea, I'm not sure. I don't know if I can exercise like I used to. Prior to all of this starting, I was in quite good shape, now I could barely run a 1/4 mile if I had to, if I could even run that, which I actually doubt. I do pushups and stuff like that in my apartment, and sometimes it makes me feel better, sometimes I think it makes me feel worse, so, I just don't know. When the weather gets a little nicer out, I'm going to try and run a little to see how that makes me feel, though I think it may make my stomach a little sick.

I've tried acupuncture and chiropractors, and neither of them worked.

Ryan: How much effexor did you take? and how well did it work? also, did your neurologist ever say anything to you about what the recovery rate for this is?

I hope this helps.

Dee

Like many of you, my daily headaches started in my late teens or early twenties, about thirty years ago. My prayer has always been that I can find the cause and a cure. My new prayer is that WE find the cause and a cure so you don't have to live with this for long.

Thirty years and no, sadly, I haven't found the answer. I can't afford doctors or prescription meds these days so I pretty much stick with Excedrin. A good day is 4 excedrin and a bad day takes 16 or more.

I find this hard to write. My experience with chronic daily headaches lacks positives. But I do have 30 years experience so let me suggest this...

Do all you can do, as much as you can do, whenever you can do it. Wear yourself out making memories. Have courage in the face of fear and fight through the fog. Love others and let them love you back. Always do your best. Accept that NDPH is your cross to bear. Build a career. Don't compare yourself to others. You may find that it takes three times as long to do the same things, but that's because you have 1/3 their clarity and energy. Until a cure is found, live your life fully within that 1/3.

I am so sorry that you have had to deal with NDPH for so long. Thank You for the inspiration and please stay in touch. We need everyone that we can get so that maybe we will eventually see a common thread come out of all this so that we might be able to help each other find a cure. I thought the same thing when I joined here and I felt so alone because the majority of people you run into either have migraines or they pop a pill "once" and their headache goes away. But then I found this and I am so thankful that Joanna started this, so that we all have somewhere to go for support where we know that we are not alone.

Also, when I work out or basically stay busy, I feel much better. I don't like to run because the pounding of the pavement hurts my head but I walk, A LOT. As I mentioned before, I am training for the Avon Walk for Breast Cancer in May which is a 40 mile walk over a 2 day period. I have been walking 20+ miles every week and it has really helped me get through this.

In general, I have not found any one thing has increased or decreased my pain level, although right now I have a head cold that is making my HA a lot worse. I know staying busy helps me "forget" about it so I try to stay as active as possible.

Jasmine, Anything come back on the heart test?

Do all you can do, as much as you can do, whenever you can do it. Wear yourself out making memories. Have courage in the face of fear and fight through the fog. Love others and let them love you back. Always do your best. Accept that NDPH is your cross to bear. Build a career. Don't compare yourself to others. You may find that it takes three times as long to do the same things, but that's because you have 1/3 their clarity and energy. Until a cure is found, live your life fully within that 1/3.

I really appreciate those thoughts, hope. It's been such a rollercoaster for me to keep my head above water and keep up the fight but your thoughts are ones that I think I might even print out and keep at my desk as a reminder that I must keep going. I know that I have to, and I have loving people in my life who push me and remind me daily, but it really comes down to the person who is suffering to tell themselves that it has to be done, I think. That's why I'm thankful that I found this site and thought to create this post. I'm happy we're going to be getting a support group set up, as well.

Jasmine, thanks for your kind words. We all have to stick together and keep each other going. Sharing our medication info, our emotions, our ups and downs, and everything else has really been helpful. I appreciate that you're finding it helpful too, and I'm glad that you've joined me and the rest of 'the crew'.

(a little added "yahoo!" for me: Today at 2:25pm starts my April vacation week!! Yahoo for working in a school!!)

Daily headaches are not synonymous with NDPH. One of NDPH's hallmark factors is the ability to remember the exact day when the headaches started, even if it has been 20-30 yrs later. You could very well be suffering with chronic tension headaches instead, which isn't meant to discount the suffering, far from it, just to let you know that it may be something else instead. Also, have you ever looked into rebound headaches? I'm not certain how long you've taken Excederin, but if it's been during the whole 30 years, without a break, that could be exacerbating the baseline headaches. I know whenever I've seen doctors for the first time, I'm always asked what, if any, pain medications I take, especially OTC, to see if I'm a candidate for rebound headaches.

Like Joanna my headaches fluctuate during the day, everyday. I'm quite often tired. Those two factors alone made university a long hard struggle and then went on to impair my work. And like Joanna & tdeannie I have suffered from poor sleep through the years.

Like you, I find that we share the perception of our lives being ruined by these headaches. Also like you I have frequently hid my pain from my employers, although when I did share I found caring and compassion from them.

Do these common experiences mean I have NDPH? No. I have no idea what the diagnosis entails. A hallmark feature of NDPH is the ability to remember to the day when your first headache started. You know, I don't remember that day. I've lived in such a mental fog most of my life I truly don't remember much of anything in detail. I just remember the headaches starting and never going away. Pain and fog interupted by intermitent clarity. I wonder if anyone else knows what I mean by mental fog? Is mental fog a distinguishing feature of NDPH? I remember forgetting my own mother's given name once. That shook me! I remember the event clearly, wondering in a panic what was Mom's name? But I couldn't tell you what year that was, let alone the date. I'm very "foggy" about dates, people and events.

A little about myself, I am among the working poor. Wasn't supposed to be that way. I earned a Bachelors in Economics with honors. Thought I'd go on to law school, but I put off the idea because by then I knew I couldn't deliver my future. You know how it is... you make a plan then don't show because you're wiped out or you do show, but in body only, headache pounding. Either way things don't get done right. I thought when I was well I would finish my education, marry a lovely lady, have kids, a house, travel. So I obsessed about getting well. Tried everything I could. Only I never got well. And I never did the things I should have done. Which is why I wrote what I did in my introduction. I see my life as more a cautionary tale than an inspiring one. But I try to inspire if I can.

But I digress. Working poor means limited healthcare options. In both of the years that I had health insurance I went to a doctor straight off. One doctor that I saw aroung 1990 thought it was alergies. 10 years of headaches from allergies! Quack! The next one suggested migraine meds. I get migraines occasionally, but it didn't make sense to me to take migraine meds daily for something I got a couple of times a year. (Medicine has come a long way since then, hasn't it?)

Eight years later when I had insurance again I saw a neurologist. He put me on different meds that had side effects I didn't want to deal with. (Dizziness and mental blackouts.) I had been taking megadoses of Excedrin for years and learned to deal with their side effects. To answer your question about rebound headaches, all I can say is that in 2002 I decided to quit Excedrin and see what happened. I went five weeks without. My headaches went crazy and I had one or two migraines a week. I felt that five weeks was long enough to overcome rebound and to tell you the truth I couldn't have gone another day if I tried. The headaches didn't let up. So I went back to the only med I could afford.

I don't know that I have NDPH, but I do know that when you said your headaches are on a completely different level, I felt the truth in your words inside me. Believe me endwoo, I know your pain. I DO. In my head every damn day and on a completely different level than anybody I've ever met in my life. The thing is andwoo, the pain isn't just in our heads, it's in our lives. Overwhelmingly so. To me, that's what takes it to a completely different level.

For the past thirty years I woke up every day with hope that my headache that day would be my last headache. I had no reason to think otherwise. Now in this forum I've learned that I may have these headaches until the day I die. Okay. Maybe another 10-20-30 years of this shit, been there done that. So the question is, how do I live out my days? I joined this forum for two reasons, to learn and to share about NDPH certainly. But more because I find wisdom and inspiration from Joanna. The spirit of her words helped me. I'm not sure if it's what she says or how she says it. She has a positive approach to this. Maybe I can learn from her and pass that forward. That would help me live out my days with renewed hope. Hope is all I've ever had.