July 17, 2007
A little break in a bad cycle of pain = happy me…
Posted by lilacgrl524 under NDPH, New Daily Persistent Headache, caregivers and supporters, medication changes, topomax, treatmentSo, 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!) :

November 12, 2007 at 6:59 pm
Hello, I’ve been looking at your blog off and on and I thought I’d leave a response, even though you wrote this in July. I have had NDPH since March 16th of 2006, following walking neumonia, a double ear infection and a sinus infection(all at once). I was 29 at the time. You must by now be off topomax. I went on a tiny dose of topamax in July and could not tolerate it. I call it the idiot drug because that’s what I became. I was a complete blob unable to remember enough to carry on a conversation. I was unwilling to take any higher dose and read enough to know it really doesn’t work anyway. I am currently taking nortryptaline which worked miracles for me the first 2 months. (That is after I got over the side effects of mouth infections and sores and a urinary tract infection.) The miracle was that I was nearly headache free. It was the first of many drugs that worked. But that is all over now. I am trying to very very slowly go up in the dose because of my sensivity to the side effects, but it is no longer helping. I am getting really discouraged. My neurologist is not very proactive and won’t give me any pain meds. Not that I really want them anyway, but he just expects me to tolerate living with chronic pain. There are no answers with this diagnosis. Oh well. Good luck-