Archive for the ‘seizures’ Category

Seizure meds and today’s run

Wednesday, July 8th, 2009

In my quest to cut down and stop taking on my seizure medication (Dilantin) I am now down to taking one dose a day (down from 5 a day). Before I was diagnosed with ms, the symptom that really slapped me across the head and forced me (and those around me) to realize something was wrong was the periodic seizures (or spells as I liked to call them, it sounded so Victorian to call them that which somehow lessened my fear). These “spells” would come on randomly sometimes every 15 minutes, sometimes every two hours or so. They seemed to worsen when my body heat would pick up. With running I would have them every 10-15 minutes at first and I would have to slow down to a walk (or attempt to walk, I actually dragged my one foot along in an uncoordinated manner). These instances of uncoordinated walking were paired with slurred speech which was all sorts of humorous and annoying at the same time. I was a periodic drunk without the fun of being drunk.

After being diagnosed with ms, this was the first symptom we attacked. I started out with 3 100mg doses of dilantin (actually the generic phenytoin). This initially helped quite a bit but didn’t completely eradicate the issue of my spells. When I got a second opinion I asked a lot of questions about the spells as my main neurologist had told me they were a symptom she hadn’t often seen. The docs at OHSU said the seizures (they liked the more doctorly term) were a rare symptom, but a documented one, The good news they told me was that these often go away over time and I may no longer need the medication. The way to decide whether or not I needed it anymore was to gradually taper off and see how it went.

At first I wasn’t too concerned as the dilantin was working and my spells at first lessened adn then eventual stopped all together. I didn’t like taking the dilantin for a number of reasons. One, I was removing the gelatin based capsules and taking the pill inside and it tasted terrible. Two, it sometimes gave me heartburn for which I could not take an antacid for fear of weakening the absorption. Three, it made my pee smell terrible (oddly, throughout the process of coming to a balance my dilatin levels were always low in my body, but it seemed to me I was peeing out a large amount of it.)

My first effort was to go from taking 5 a day to taking 4 one day then 5 then next. I’d do that for a week and then go to 4 and 4 and so on. I made it all the way down to 3 and 2 when I noticed the seizures coming back all be it very slightly. Still I didn’t want a return to them so I went back to taking 4 and 4 which seemed to be a fine balance.

My second effort started about a month ago, but I decided to not do the complicated odd/even dose thing and instead did a full dose jump. As I dropped to 3 and 3 I started to feel very mild seizures at the end of my runs, but that soon dissipated. I stayed at 3 a day for a few weeks before dropping to 2 daily doses. A similar thing happened at this jump. I felt a bit seizuery (yes, not a word) after a few days as my levels settled. This only lasted for a couple days then went away for the most part. I still felt a little weird, hard to put my finger on just what I was experiencing. Just sort of fuzzy, but not that bad.

I have now dropped to one 100mg dose a day and experienced the same effects as my levels changed. I feel a little woozy, but nothing horrible. The heat has also been really bad these last couple of weeks, so I am sure that had an effect. I am going to stick with the one a day routine for awhile and see where it takes me. But I am really looking forward to stopping all together.

So running. I woe today with a slight hangover, nothing bad as I only had a few drinks last night with a friend. I was a bit sluggish at first, but about midway through I picked up my pace and kept it up. I really wanted to to to the track today, but it didn’t seem like the best time to take up speed workouts. Soon!

Strong run this morning

Thursday, May 21st, 2009

I missed writing for my last run. It was a good moderately paced longish run, I took most of my extender routes. The weather was a tad cool, but great for a run. Today (took a rest day yesterday) was gorgeous as well. Just cool enough to make running in the sun the perfect warm up, but not cold enough in the shade to be uncomfortable at all.

Today I felt a tad sluggish when I woke up but once I got going I felt really strong on my run for like 95% of it. I didn’t push it too quickly and maybe that is why it felt good throughout. I ended up with a 9:30 pace for the 6.3 miles I put in. Not great but not bad and about what I have been doing my base runs at lately. My base run distance seems to be increasing. I don’t know if I am just encouraging myself to go a bit further or what, but the 5.5 base runs I was doing previously are all getting extended. I am still feeling fine throughout them.

On an ms note, I have cut back with my dilantin to three a day (from alternating 4/5). My hope is to eventually stop taking these anti-seizure meds as this sort of symptom I was having with the periodic seizures is one that has gone away over time for people. So I am going to try weening myself again and see what happens. I have been doing this for a week or so and I am noticing that when I am over heated from runs that they seem to come back a bit. But only one small one as I am cooling down, almost as if it were a quick head rush. I do my kitty-kitty-kitty speaking test and I am having trouble though, so I think it is the seizure thing. I am going to see how it goes for a couple of weeks before giving up though. I think I will try to stabilize at three a day.

Return of the Seizures

Friday, June 13th, 2008

Could be a good name for a 50s horror movie or a late eighties punk band. But alas it is the title of today’s blog entry. It is actually not as horrible as it sounds. I certainly didn’t think I was cured or anything. A couple of days symptom free is better than nothing. And today wasn’t all that bad either. The seizures were there occasionally but they were pretty mild.

I dosed rebif last night, did it in the front of my leg which seems to hurt a bit more than other places (thought two days ago I hardly felt anything, mayne I got a fatty spot then.) I went out on my morning run today and made it a half mile when I got my first seizure, string broken! I only had two more, so it wasn’t bad at all. I added on a few extra blocks and totaled out at 8.4 miles. I was a little run down when I was done, which was a bit of a disappointment.

I got the results of my blood test and the dilantin levels were still a bit low, so I going up to 4 on even number days and 5 on odd numbered days. I am never going to remember this, but I will give it a shot. I could split the pills I supposed. I take the gelatin cap off anyway on my pills, trying to be a good vegetarian,. Oddly the pill is a solid tablet inside the gel cap. I think they must cap them cause the med tastes terrible. I couldn’t find any other reason for not removing them in my internet search, Maybe someone out there knows something I don’t about it.

I have a friend coming into town this weekend and I hope I can get another long run in. I won’t be going out tomorrow either.