School’s out, and so (still) is my brain.

I have completed another year of 5th grade! haha. I got to RE-learn how to add/subtract fractions, how to read a weather map, how the pioneers lived, who the heck Ben Franklin was, and all that jazz. I had a great experience with the kids, but I certainly am ready for a break. My head is also letting me know that, too.

I haven’t noticed (yet) any kind of differences regarding my thought processes, memory, word-recall or anything else like that since I decreased my Topamax (200 to 150mg). It is almost a month since I did that, so I’m not going by a clock or anything – my headache docs think that the memory issues are not permanent, but I won’t listen to that until I can have proof myself. Our minds are so fragile, and I am such a sentimental person – it has always been so important to me to remember dates and details. I would hate for that to really be diminished/impaired for good.

Today, my head has felt really cloudy and off-kilter. I went to a friend’s graduation luncheon, and her whole family was there. I was able to hold conversations alright and I felt that I did an okay job, but once I got back into the car to leave, I had to let out a huge sign of relief. i guess I had been pushing myself harder than I realized to keep myself on top of things while at the party so that I would come across as sounding fine. That was almost 2 hours ago, and still, it just feels like there’s a sheet over my entire head, masking it from seeing, speaking and hearing 100%.

I hope everyone is doing well, and enjoying the weekend… yesterday was GORGEOUS, and it was pretty nice out up until about 20 minutes ago, and then came the lightning and now it’s storming. YAY New England weather!

 

What a week. Decreasing meds = not fun…

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!

 

Memory “issues”… putting it lightly

Topamax is a strange friend. It’s one of those friends that is willing to help you out, but only to an extent and with an agenda of its own. It will help you put away laundry, but won’t really fold the clothes well, and then mid-way through the task, you might forget which drawer you usually put your socks into but Topamax isn’t there to help remind you.

That’s not exactly a true example, but just an analogy to show pretty much what has been happening to me over the last year and a half or so. My last headache doc started me on it, and my current docs still have me on it since it has been helping with some pain. However, as many other NDPH sufferers/people who have taken Topamax for other reasons have shared with me, I am not alone when it comes to the side effects. Topamax isn’t the only med I am on: I am also on Cymbalta (mainly for the pain, but it helps with the depression aspect), Provigil, and recently started Pedadolex, a supplement for headaches. I will put up a note about my meds in my “about me” section.

“Although the exact way TOPAMAX works is unknown, it’s believed to help “calm” overexcitable nerve cells in the brain so they don’t send out the signals that can cause migraines.” So, calming nerve cells, but they don’t know exactly how it works. Comforting. But it’s still prescribed to tons of people for lots of reasons. I know, you could be saying, “Joanna, if it’s causing you this frustration, why don’t you just stop taking it?” We’ve asked ourselves that question, too. This has been one of about 30 meds that has given me any type of relief, even if it’s only a small amount. We’re starting to lessen the dosage now to see what happens with the pain and the memory issues, as well as try some other things (I will discuss meds later).

“Serious risks associated with TOPAMAX include lowered bicarbonate levels in the blood resulting in an increase in the acidity of the blood (metabolic acidosis). Symptoms could include hyperventilation (rapid, deep breathing), tiredness, loss of appetite, irregular heartbeat or changes in the level of alertness. Call your doctor immediately if you get these symptoms. Your doctor may want to do simple blood tests. Chronic, untreated metabolic acidosis may increase the risk for kidney stones or bone disease. Other serious risks include decreased sweating, increased body temperature, kidney stones, sleepiness, dizziness, confusion, difficulty concentrating, and increased eye pressure (glaucoma). Call your doctor immediately if you have any decrease in vision or eye pain. These problems can lead to blindness if not treated right away. More common side effects are tingling in arms and legs, loss of appetite, tiredness, nausea, diarrhea, taste change and weight loss.”

As you can see, there are a whole boatload of side effects, and I highlighted the ones that I have experienced. It doesn’t seem to specify anything about the short-term memory issues or the word-recall problems that I have experienced per se, but certainly the difficulty concentrating has been a problem. Feeling exhausted has been such a problem as well, I’m also on a medication to help out with that so that I can function during the daytime (I will mention it later).

When I am not able to remember if I called my doctor’s office back, or if I can’t remember if I took all of my vitamins (I get stubborn and don’t like to use day-of-the-week pill boxes but I know I should), when I can’t remember the names of the 5th graders or coworkers I work with at the middle school on a daily basis (I will talk later about what I do)… I feel so frustrated with myself and that I am not doing the best that I could be, or not taking enough control of my health situation (“I should be doing more to help myself get better,” etc). I come home from work and feel like collapsing on the couch – this is almost daily. I can fall asleep for upwards of 3 hours, even if I have taken the medication that is supposed to keep me awake and alert and going for the day. That’s the pain taking over.

I will talk later about how NDPH and these issues affect me at work, and how they have but a big fat yield sign on my education/career path.