I finally got a diagnosis! The "Voila!" post you've been waiting for! Well, more or less. I came across the term New Daily Persistent Headache on Friday, on the National Headache Foundation's website (http://www.headaches.org/) and I fit all the diagnostic criteria! It's a type of Chronic Daily Headache. I also read some blogs and posts on a NDPH support group website and finally felt like there was someone else who actually knew what I was going through - which was somewhat of a relief, even if all of their stories were horrible too. I emailed Dr. Maynard this morning and he confirmed the diagnosis - he said he had written in my chart as my official diagnosis at my last visit, but he didn't tell me! Not that it would've mattered too much I guess. Actually, I'm glad I didn't know b/c I got to enjoy my 5 days of no headaches while on the steroids. Here's what I know about NDPH as far as treatment and prognosis: -It's one of the most difficult types of chronic headache to treat b/c it often doesn't respond to medications made for migraines. So it's basically a lot of trial and error with meds, trying to find some cocktail of preventative and abortive medications to manage the pain.
-Sometimes the headache goes away on its own with or without treatment after several months, but other cases last for years or decades. Yikes. I definitely don't want to sign up for that, but I don't think I get to choose!
-Dr. Maynard wants me to start with supplements of riboflavin and magnesium oxide, and I'm also going to try to stick to the "headache diet" (cutting out foods that could trigger headaches or in my case, make them worse - a long list of things like chocolate, caffeine, cheese, processed meats, yeast breads, nuts, artificial sweeteners, etc.) and exercise (I got to run yesterday and it made my head feel a lot better - while I was running and a short while afterward) to try to manage my pain that way until I see the neurologist in Montgomery on April 28th.
Last night it got really bad and I ended up taking Nucynta (which is like oxycodone) and a sleeping pill so that I could sleep. Knocked me out for sure, which was the goal. Hopefully in the next four weeks I can keep a good record of my pain/food/activity so by my next appointment I might have some ideas about what makes the pain better or worse.
So it looks like I'm in for the long haul with this headache, hopefully with low-pain days where I can work and play like last week, but there's bound to be some high-pain days (or parts of days) where I'm going to go home and knock myself out. I'm going to look into some alternative therapies and see if any of them might be an option for me. I probably need to read up on music therapy for pain management too...surely I've learned some techniques that will help. Ha, but everyone who went to school with me knows relaxation exercises were not my strong suit!
What you can do - if you want to read more about NDPH, here's a good article: http://www.healthcentral.com/migraine/types-of-headaches-41643-5.html and here's a blog by someone who has it: http://www.lifewithndph.com/. You can assume that from here until the day that I say I have been miraculously healed from the headaches (and believe me, you will hear it!) that I am in some amount of pain. It may be tolerable, where I can be distracted and be okay, or it may be intolerable where I won't be able to do what I want, but I'm going to do my best to live my life despite the pain. Thank you for praying, and thank you for keeping up with me and being concerned - it really means a lot to me, you have no idea. I'll keep you posted on how it's going, but I don't want headaches to rule my life (or my blog!) anymore.
