Anyhoo, this new guy was fantastic, spent just over 2 hours with me (and of course, mommy-dearest). I really needed someone there with me on this visit because of how badly I've been feeling and how foggy my mind is in general. I would have just gotten all mixed up with the train schedule to get there and possibly even slept through the stop, and of course, my mom remembered certain things that I failed to (even though we had made a list of things to bring up)... this would be my "Thank Heaven for Little Girls" break-out number, changed to be about mommies and their awesomeness, of course.

We are doing what I am calling a "medication overhaul" -- finally saying goodbye to everyone's "friend" Mr. Topamax once and for all. I couldn't be more excited, I almost started planning a Bon Voyage party. I think that would happen when my memory and all that jazz returns. I'll probably talk a bit about the meds once I've been on them for a little while (as not to jinx them? not sure). I actually even got some injections while I was at the office, Lidocane and something else that ends in 'cane (not candycane, I checked on that one!). Back of the head, front of the head, numbed me right up and helped to really lower my headache level right then and there... pretty amazing. A much improved/ happier ride on the train (can we say 3.5-ish hours? eew.).

I was even able to enjoy a weekend at a friend's lakehouse, which was about a 2 hour drive from where I live. I had been nervous that I would have to cancel, due to the long drive and just generally feeling like junk. I really did feel so much improvement from my visit to the new doc and from starting some new meds/ beginning "The Great Goodbye" to topamax. crossing my fingers that it continues....

hope everyone is well. joanna

This where i sat for the weekend at my friend's lake house. we moved between here and the dock. and the grocery store about 20 minutes away to get food (and the farm to get fresh eggs!) :

Never a dull moment...

P.S.  I've been coming across more and more headache blog friends, and even though it's unfortunate that we are in this situation, it's been so helpful to know that there are others out there who are doing their best to share what they can.  So, thank you to all my new friends :-)

I'm just hoping that it's not too intense, work-wise. I know that my doctors always talk about the summers as a good time to try new things with my medications, but I essentially lost most of my summer last year because of that. I spent the bulk of the summer on the couch in front of the TV, crying to my mother. I was even at my beach house at that time, and I barely saw the beach. Pathetic. I basically don't want that again, even though I obviously want to find things that will help me feel better... it's something that us "headache people" seem to fight with daily. Soo frustrating.

Luckily, the course is 2 days per week, and it's only from 10-1. I tend to feel better in the earlier part of the day, so hopefully that will help. I'm just hoping I can get all the work done in time!

I'm starting to feel a buildup of pain, so I should probably sign off. Feels like a good ole night tonight... ugh.

This excerpt is from a NY Times article written by a man who has been suffering from chronic headaches for 20 years. The way in which he writes this article makes me feel as if I could have been a contributing writer, or could have even written it myself. It certainly is something that I could even see, as a person suffering from this kind of pain, giving this article to the people I am friends with/work with so that they know what I deal with daily to help them better understand my experience. It's also a funny article, which helps. When you have any type of chronic health problem, humor is something that everyone needs.

Some details from the International Headache Society's International Classification of Headache Disorders:

4.8 New daily-persistent headache (NDPH)

Diagnostic criteria:

1. Headache for more than 3 months fulfilling criteria B–D
2. Headache is daily and unremitting from onset or from less than 3 days from onset
3. At least two of the following pain characteristics:
   1. bilateral location
   2. pressing/tightening (non-pulsating) quality
   3. mild or moderate intensity
   4. not aggravated by routine physical activity such as walking or climbing stairs
4. Both of the following:
   1. no more than one of photophobia, phonophobia or mild nausea
   2. neither moderate or severe nausea nor vomiting
5. Not attributed to another disorder

So, "in a nutshell," there you have it. no treatment specifically outlined. The part that has been one of the top items of the Frustrating List is the fact that "other conditions must be ruled out before arriving at a diagnosis." I don't even remember how many months we spent going to so many other doctors other than headache doctors and having tests to rule out diseases and illnesses. Not to mention the pain and time that I had to take out of college to have those appointments and tests. A big fat "OY" for that.

Next topic... memory, or my lack therof these days, and how it's all thanks (haha) to medication. Thumbs down.

January 2004:

My headache(s) started on a Sunday morning during my sophomore year of college, during winter break. I woke up, as normal, sat up, rubbed my eyes, started to get out of bed, and noticed that I had some pain on the right side of my head (specifically, near my eye). Later that week, since it didn't go away with any over-the-counter meds or anything else, I went to the eye doctor. Check-up: OK. "Go to a neurologist," he suggested. "Here's the name of a childrens neurologist, I refer people to all the time, he's great, and in town."

Neurologist = BIG A-HOLE. Pardon my language, but he treated me like a child. I was 19 at the time, and he still treated me like I was 5 and was begging for a lollipop at the end of the appointment. My headache(s) were now mainly the whole right side of my head. [side-bar: the reason I say "headache(s) is because I have a constant headache, but the pain level goes up and down all day, making it seem like it is broken up into multiple headaches). We had to practically BEG for a CT-scan. His explanation of a CT-Scan = "We have little tiny cats and we inject them into you and they have little tiny cameras and they take little tiny pictures and send them back out to me." He also tried to tell me that I had ADD, and that it was all in my head. Mmhmm. Clearly, we said "adios," and went to a new neurologist who treated me like a REAL LIFE ADULT and took me seriously.

Then came the dentist ("You have TMJ, that's what is causing the headaches"), the TMJ/myofacial pain specialist ("Yes, you have TMJ... No, you don't have TMJ, you have an Indomethacin-responsive headache... No, you don't...Hmm), the acupuncturist, the chiropractor, the massage therapist, my regular doctor, the gyno, the eye doctor AGAIN... INSANITY.

I am now working with my 2nd headache doctor. The reason why it's my 2nd is because we (we = my mother and I... my mom has been instrumental in this whole "Operation: Stop Headache" business) felt that while the doc had found meds that were helping to kinda keep me stable, I wasn't getting any better, and he wasn't moving me along at all. My new docs have done a lot in less than a year, and hopefully will keep doing so.

Okay. So, that's the "nutshell." Sort of. It's dinnertime. Dinner = leftover pizza from Unos!

In so many ways, people with chronic conditions go through the Kübler-Ross Five Stages of Grief of denial, anger, bargaining, depression, and acceptance. While these stages are usually applied to those who have received a terminal diagnosis or for those who are grieving the loss of a loved one, they can be adapted and applied to those who are suffering with chronic illness as well. At some point, I will share a paper that I wrote for nursing school on the "Theory of Chronic Sorrow". While my paper was designed to talk about how that particular theory applied to the parents of neonates, I found in my research that it could also apply to those with chronic illness. So what I'm getting at here is that those with such a chronic condition like NDPH will all be in varying stages of these grieving processes in some way. And if the theory of chronic sorrow applies, we go through these stages again and again each time we experience a strong reminder of what we lost. Because we'll all be at different points on the journey, it's good to have others around to help us through it.

So, if you or a loved one is suffering from NDPH, I strongly suggest that you check out the New Daily Persistent Headache (NDPH) Online Support Group over at mdjunction.com.