New Daily Persistent Headache (NDPH)

My diagnosis is New Daily Persistent Headache (NDPH). Basically, they don't know why it started, and there's no one cure that works for everyone with this. I woke up with a bad headache in January 2004 during my winter break from sophomore year of college - wasn't working, didn't have schoolwork to do, no major stresses. I've had all the tests, been to basically all the different types of physicians and specialists, acupuncture, phys therapy, massage, you name it and I've most likely given it a try. I barely was able to finish college on time but everyone was wonderful and allowed me extensions and whatnot. I was so greatful.

Just wanted to introduce myself and see if anyone else on this site has been dealing with headaches like I have - if you have migraines I'm sorry for your pain too, I wish that I had migraines because then I wouldn't be in pain everyday. What I have aren't migraines. I basically have a headache all the time, but it's like a rollercoaster where the level of the pain fluctuates throughout the day, and it's always random and is not affected by anything I do, eat, etc.

I've been working with the Jefferson Headache Clinic, which is through the Jefferson University Hospital in Philadelphia. They were the 1st ones who really got my pain level down to a manageable level and made me feel BETTER for once. I've been able to work and make plans with friends and LIVE my life morseo than before. I'm NOT out of the woods yet, but much better than I used to be.

I'd love to connect with other NDPH people or people who have similar situations!

Warm welcome to our community and good luck finding answers and friends!

all the best

Alon

Can I ask what they put you on to make your headaches manageable? What did your pain level used to be and what is it now? are you ever pain free? does your neurologist think you'll ever break your headaches?

The Cymbalta is good for the pain as well as the antidepressant aspect too. It's crazy that even if we try to alter the dosage, such as lower it by even 20 mg, my pain levels go through the roof and just all over the place in general. My head is just so sensitive. My headaches are basically on one giant rollercoaster, but I never know what kind of height the next peak is going to be or when. Thats part of why I am tired quite often - it's also because of the medications. I also have been having a low iron problem too apparently, so I'm dealing with that on the side... never a dull moment.

I had things in my life planned out "perfectly" too, and was kind of a perfectionist, and had a very hard time accepting that it was going to have to change. feeling this way almost all the time, with all the ups and downs of it really screws with my mood, and it was easy to hide at first, but that was only for the 1st year or so.

I'm so glad to have found another real NDPH person, especially one who goes to Jefferson! Don't give up hope, you will find some sort of success there. who have you been seeing there? feel free to contact me through the messaging or whatever

I'm so sorry that you have this, it truly is a horrible condition, and I know what you mean by wishing you had migraines instead as I've had a few people say "I know what you're going through, I sometimes get a migraine." and I'm like no, this is not quite on that level, it's completely different. Does your doctor think they'll be able to get your pain down to a 0 one of these days? or do they think it will ever go away on its own? you mentioned that there isn't one cure for everyone. Has your doctor told you what the cure rate is for this condition as I've heard different things from different people and I don't know what to believe. Thanks for responding. It's also a rather lonely condition because it is so rare.

What IV drugs worked well for you? I'm hoping, actually, to be admitted to the hospital for IV treatment since I've heard they've had some success in actually breaking people with NDPH.

Which drug do you respond to more, the Topamax or the Cymbalta? how much Topamax are you on and did you try that prior to going to Jefferson?

It really is pretty lonely to have this... no one can truly understand what it is like. DHE was one of the big things that worked for me, as well as Reglan... there's at least another 1 or two that I am blanking on. I have DHE onhand that I can take as a shot if I am having a VERY high-level headache, but I have 2 lower "levels" of pills that I can take for my "lower level" headaches (like, on a scale 1-10, 10 being at the ER, if I was at a 4/5+). When I was an inpatient at JEFF, there were many patients with many different types of headaches, no one else with ours though. A few people were there for their 2nd or 3rd visits, but not everyone's visit is the same length. Also, just because you go in and stay for a few days and feel better, after some time, whatever remedy worked could end up not working anymore - I don't know what happens for those repeat people, but like I said, everyone's case is so different...

I dont think that anyone at JEFF has said anything about a specific cure rate... I have had a good number of 0-1 days since leaving the hospital, and have been able to work and drive and participate in lots of aspects of my life that I wasn't up to doing again. I still, of course, have bad days/hours where I have to sit out or take a break/nap, but it's definitely more manageable and I don't get as upset anymore.

Either way, i'm glad you have 0-1 days! I assume by 0 you mean you are pain free as in no headache at all? if so, that's great and maybe they will be able to find a way to stop it somehow for you! The neurologist I've seen here has given me some DHE and Reglan drips, though they've been for like an hour or less, so maybe a much longer course would do more good, no idea . . . but, I am glad that I found someone else with this condition, at least nearer my own age, I found two other people scouring the internet, but both were like 17, and there's also a yahoo support group, but it's basically just me and a woman from England who, coincidentally, got hers on the same day as me, and has had it twice! she had it a few years ago for 4 or 5 months with pain, then 5 or so months of a strange feeling in her head, then it went away, she's hoping for the same thing this time, though it's lasting longer . . . so, we'll see, she recently ran into someone at her work that also had it apparently, and his went away after nearly 3 years, and this was a couple years ago, though she didn't talk to him long. So, it's apparently possible for it to go away after a long period of time! Keep in touch, I know I probably will, as I am incredibly depressed and don't really know what to do know with my life since I don't enjoy much of anything anymore and my life is now my headache when 4.5 months ago is was so much richer and enjoyable.

I'm glad that you responded to my post too! The depression aspect for me has been up and down as well... it was worse for me when I was still trying to get through college (I graduated in May, ON TIME!). It was such a struggle to be able to get through all my work - the school was SO understanding and gave me all the extra time that they could, and they were great about it. My boyfriend has been wonderful and most of my friends have been supportive too - at least 1 friend was lost because she started to just assume I was faking it and wanting attention. Whatever, she's not important anymore!

Just do your best to do what you can each day. Even the smallest chore done or shortest time out with friends can be a HUGE accomplishment for us when we're having a painful day... but just remember that you need to keep what's important in focus so that you do not get overwhelmed (which will add to your frustration about the pain and depression). i hope we keep in touch!!

heh well, i dont have complete 0-1 days per se, but sometimes i'll have a good majority of days be 0-1.

oops, that was supposed to be "but sometimes I'll have a good majority of hours be 0-1"

i'm kinda hurting right now (4 for now), the past few days I've had to take Reglan, so when that happens I really have to proofread what I write!

I just worked so hard throughout law school, went to a very good school, did very well in it, studied hard for the bar, passed it, then woke up that monday morning after finding out i passed that friday evening, with the headache and nausea, so I didn't even get to go to work one day without a headache as a licensed lawyer, not one single day, all that work, and it all seems like such a complete waste yet I still have $180,000 in student loans i need to pay off, so i need to work my 50 hour weeks for lord knows how long. thing is i like my job, pretty low stress, good pay, everything was working out well for me, if I didn't have these headaches basically everything would be going according to plan, that's what's so frustrating. I took a huge gamble going to law school, taking all those loans, that i would be able to succeed and pay them off so that i could do something public interest oriented by the time i was 40, and now that all seems like it was pointless because i'm in constant pain that will likely never ever go away. sorry that this is a depressing post, i'm just really struggling with this and even though I'm seeing a psychiatrist, I just haven't really found anyone who remotely knows what it is I'm going through. I just feel like I've lost my entire life because of this.