Maybe not everything.... but helpful

So what exactly IS CDH and NDPH anyways?

Chronic Daily Headache Syndrome is a neurological dysfunction that presents itself as a headache that lasts at least 15 or more days a month. New Daily Persistant Headache is actually a branch off of CDH, it is a sudden onset of intense headache pain that lasts a minimum of 3 months.  These two are very closely related and are now almost considered one in the same because most sufferers of CDH have a headache 24/7 just like NDPH.

I am often asked what it really means.  Like do I really have a headache every single day and how many headaches do I normally get? The answer is yes, I REALLY DO have a headache every single day.  And as for amount, I have had One.  The same one.  It just never ever went away.  I always have pain in my head.  Before my GP put me on preventative medication my daily standing pain level was at a 6-7.  That is near migraine pain, nonstop.  Now that I am on preventatives, my daily pain has been held at a "comfortable" 2-3.  I say "comfortable" because after almost 5 years of the same pain in the same place I am able to go about my day pushing the pain to the background.  I have to!  I am a stay at home mom and I have two children at home with me that I care for every single day.  As much as I would like to lay in bed and sleep off the pain some days, it just isn't possible.  Pushing through the pain is essential.

I think the very best description I ever heard for New Daily Persistent Headaches was it described as a bright light controlled by a dimmer switch. It gets brighter and brighter (intensifying the pain) and then dimmer. And then back again. But it never gets shut off completely.  When I read this I was like YES!  That is exactly how it is!  

My new "Normal"

Chronic Pain. It is never something I thought I would have to deal with. But then again 5 years ago, I just kinda assumed that all people dealt with headaches on a regular basis. After my sister brought it to my attention saying to me, "You sure get headaches a lot." At first I blew it off, and then I really started thinking about it. And yeah, I guess I did. I would get one pretty much every day, sometimes for a few minutes, sometimes a few hours.... When I started asking around I found that no, most people don't live with regular headache pain. I was just a weirdo with issues. I guess deep down I knew that. But it just seemed strange to me. I knew I should probably see someone about them but I just hoped they would go away on their own. But they didn't.

We were sitting in church, and I remember leaning down to pick up a hymnal and I got this crushing feeling in my head that I had never felt before.  Every movement sent me reeling in pain.  The music became too loud, the lights too bright and all I wanted to do was to go bed.  Welcome to my very first migraine.  I went to bed and slept for over 4 hours.  I woke feeling groggy and disoriented.  The migraine itself had faded but my daily pain was there and stronger then ever.

Instead of those few minutes of headache pain it had slowly morphed into hours which turned into days and then just never ever went away. I was living with constant 24/7 headache pain and the intesity was increasing to where just a couple of advil no longer did the trick.

It was now time to see my doctor.  I went to my general practitioner because that was all I knew.  I went to him for everything else, so it just made sense for this too.  He had me keep a Headache Journal.  I was to write down everything; what I ate, what I did, anything at all that could pin point what on earth could be triggering these headaches.  I was to keep it for a full month and then come back in to see him and we would go from there.  He also sent me for a full CT of my head to check for tumors, aneurisms, and other major icky stuff.

UGH, one whole month without answers?  Crap.

It seems stupid now, but I really and truly thought he could tell me what was wrong and how I could fix it at this appointment. This is how it always worked in the past.  I would have something wrong.  I went to the doctor.  He would tell me what was wrong, prescribe me some medicine and two weeks later I was all better.  I never had a "condition" before.

So dutifully I wrote it all down.  And I noticed a trend: There was NO trend.  I would wake up and the headache would be there.  I would go to bed and the headache would still be there.  Unfortunately I couldn't find any food triggers.  I was really hoping that something I was eating was doing this to me.  I would much rather live without coffee then to have constant headaches.  But since I woke with it and went to bed with it we couldn't find anything I was doing that was giving me this pain in my head.  On a positive note, my brain scans can back normal, so that was GREAT news.  I had to admit I was a wee bit terrified he was going to call me and tell me I need to come in for emergency surgery to remove the giant tumor pressing on my brain. *phew*  But the downside is that I really had nothing to bring to the table: no triggers, no tumors, no aneurisms, no nothing.

He said I had a condition called Chronic Daily Headaches (CDH) which is also known as New Daily Persistent Headaches (NDPH).  He explained that just like some people had high blood pressure, I had Chronic Daily Headaches.  There was nothing I did to give it to myself, and unfortunately there was nothing I could do to get rid of it.  And it was likely I would have this condition for the rest of my life.  Now it was time to talk about a daily preventative medication and one to stop my migraines in their tracks (I had already had a few more before I actually got in to see him).  We had to get my pain level under control.

Um, wait.  You mean to tell me I was going to have this headache for the rest of my life?!!!!  What the hell?!  Not the news I wanted to hear.  I have to admit at this point the thought of a brain tumor actually sounded a little appealing.  At least then they could cut it out and I would be done with it.

Nope, no such luck.  This is my new normal.