A little break in a bad cycle of pain = happy me…

So, this past Thursday was the day that I met my new headache doc at the office I’ve been going to for about a year now… the guy I had been seeing there left for family reasons or something (the best part: he wasn’t even going to bring it up until we asked him how long his fellowship was lasting for, and only then did he decide to tell me that “oh yeah, this is probably the last time you will see me”. Oops.).

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!) :

 

Owww.

I just had the WORST SHARP PAINS that I have had in weeks. Literally.

Just 5 minutes ago, for about 3 minutes straight, I stood against the wall in the kitchen (just because that’s where I was when it hit) and grabbed my head and keeled over.

As fast as it came over me, it went away.  I’m exhausted from it, as if I am a battery that had power zapped from it.

I can’t go to bed yet, however… I still have some pain, and I can just feel that it will be too hard to fall asleep with it… I’ll just have to “wait it out” with the tv/computer and distract myself for a little while until the pain lessens and I can try to slip into bed and to sleep before the pain grows (I could watch tv in bed until I fall asleep, but my boyfriend is already goin to sleep - he has to wake up early for work).

This type of post is the type that i don’t normally expect to be able to post right after the fact…  I’m glad I’m able to share this experience, especially for those who aren’t familiar with NDPH.  I guess tonight’s “quick sharp pain” can be compared to a migraine, but I just didn’t have any of the “extras” that go along with it - no aura, no nausea, no sensitivities to anything, etc.

It just comes whenever.

This is why it can be so hard to make plans, to know when I can really drive a long distance, or how I’ll feel for a whole day walking around our favorite city. I have NO IDEA if I’m going to have a problem, very similar to my migraine friends.

And… yeah. It’s messing with my concentration right now. I think I better wrap this entry up.  Just wanted to share so others could get a feel (at least not literally) of what can happen 1+++ times during my day. Everyday.

 

Time to make the donuts, time to change the dosage…

I’m at about the 1-month mark for the lowering of the Topamax  (200-150mg/day).  At first, I didn’t really notice too much difference in the pain level - the main point of lowering the dose was to help with the memory issues that it causes.  I really haven’t noticed any improvements.  After a little while, however, my headache has become more apparent and now I’m taking rescue meds almost every day (as opposed to barely 1 time/week before).  The doc who called me back from my headache doc practice (who, by the way, I have never heard of before - but he was very nice, luckily) suggested that I move up to 175mg/day until I see my new doc (July 12)… if that doesn’t work though, I will have to just go back to 200 for the time being.

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

 

Back to School, Back to School (soon…eek!)

For about 5 weeks, starting the 1st week of July, I am going to re-enter the classroom. I will be a student for the first time since May 2006 (I took a “distance learning” course with some of my coworkers this year but it was all on our own, no teacher, no class). I’m still in the midst of taking my teacher licensure tests, and so once those are passed, I will be fully licensed to teach. I would prefer, however, to get my Masters before teaching, and with all the headache junk, I have had trouble passing the tests (which has in turn delayed my graduate school time). So, I’m going to be taking “Reading and Writing Across the Curriculum” for non-degree Graduate credit at a college in my area - and it’s a school that I wouldn’t mind going to for my Masters. The class is even included within their MAT (Masters of Teaching) program, as it typically is at a lot of schools.

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.

 

I feel like I wrote this article…

. . . “If you judge these medications on their ability to cure my headache, all failed. If you judge them on their ability to deliver a string of bizarre and unpleasant effects, however, then they were a rousing success! One caused my heart to slow significantly, so that if I exerted myself by, for example, walking several paces, my vision would swim (inconvenient, as walking several paces was a big part of my life back then). Another scrambled my sense of time, giving me the sensation that I was continually shifting several seconds into the future and waiting for the rest of humanity to catch up to me. For the record, imaginary trips several seconds into the future have nothing much to offer, aside from feelings of stark terror.” . . .

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.

 

What is NDPH, anyway?

Teri Robert, editor of HelpForHeadaches.com, has put together an article about NDPH: New Daily Persistent Headache: The Basics.

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.

 

Rewind.

So, an introduction. Sort of “in a nutshell”, but a lot of times I tend to keep typing and then realize it’s super long. Oops. Basically, I have been diagnosed with New Daily Persistent Headache (which I will refuse to type out… NDPH), which is a chronic daily headache. I will post the symptoms and info later.

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!