So, I have been wanting to update since at least Wednesday, but have been having a tough week, pain-wise. Last weekend, I decreased my Topamax by 50mg (per doctor’s orders) because we had discussed my frustration and difficulties with my memory and whatnot. We’re trying to see if a decrease in the Topamax will still help me out (as much/little as it is) with my headache, and also see if there’s a decrease in my memory issues. I take Top. at night, but for the past bunch of days have been needing to take some of my rescue meds after work or in the early evening – seems as if the decrease is already showing its face…
Stress at work doesn’t help my pain, but doesn’t bring it on either (luckily!)… the middle school is winding down, and next week is our final week – we only go through a half day on Thursday. I will miss seeing the kids everyday, but I certainly need a break (especially now with this medication change business)!
On Tuesday, specifically, I ended up barely getting through making/eating dinner for the two of us and then I collapsed on the couch… and slept from 7-9 unintentionally. I had also taken a rescue med. I woke up at 9 to the sound of my cell phone, but couldn’t recognize that the sound was coming from the phone… my boyfriend kept saying, “Joanna… your phone… hello?! Are you gonna get your phone?” I really woke up so out of it and still ended up going to bed 45 mins later with almost that same amount of pain. It was upsetting because I haven’t had to really “shut down” and waste an evening and still be in pain when I woke up in soo long… ugh.
Nothing too big planned for the weekend, so hopefully some relaxing time…
Hope anyone out there in my boat is having a better end to their week!
June 15, 2007 at 11:02 am
Hope this week is going better. You never know how increasing or decreasing a medication is going to go. You just hope for the best but it certainly can be frustrating. You mentioned rescue meds. What do you find works best for you? There are so many NDPH sufferers out there and it sure helps to read and share experiences and get the word out there. Hopefully the NY Times article will help too. People need to know that there are no magic pills for this and that it can take years to find something that helps if you’re lucky. Take care and please continue sharing. It really helps!
June 16, 2007 at 5:07 pm
Thanks, Judy. It hasn’t been the best adjustment since I have been decreasing the Topamax, but I am going to give it a few more weeks before I decide to change back or anything like that. As far as my “rescue meds,” I have a few that I can take, and what I will take will be determined by my pain level. For when it’s kinda creeping up (4-5ish on the 1-10 scale, 10 being the worst), I have Promethazine. For if the pain is already higher than that, I can take Relafen, and when I’m really bad, I have an injection called DHE (Dihydroergotamine) which hurts just as much as the headache itself. They all seem to help me out, they are just not instantaneous, that’s all. When I did my 10-day inpatient program in the hospital, those were the meds that they found to be most helpful to me.
I’m gonna go post about how I’m feeling – I just had the last day of work (middle school), so now I will have much more time to be able to keep up with the blog!). Thanks again! I also hope that more articles and more research is published so we can gain some answers/help.