Showing posts with label epilepsy. Show all posts
Showing posts with label epilepsy. Show all posts

Friday, May 19, 2017

Taper

I’ve been continuing to taper off of Trileptal and I keep feeling better. I walked during my lunch break three days this week and I’ve gone to the gym three days, too. However, I may be pushing myself a little too hard, at least at this time: I’m so excited to be healthy enough to exercise again that I’m kind of jumping in headfirst. Most of my muscles are sore and I’ve been having trouble sleeping, which has made it hard to be productive at work.

All of this fatigue is just a part of my body getting used to being active again and will pass with time. Plus, I’d rather be tired from too much exercise than because my medication is making me sick.

One thing that hasn’t changed? The severity of my allergies, as I still can’t wear my contacts for more than a few hours at a time. Still, I’d much rather be forced to wear glasses and be able to exercise than have the convenience of contacts again.

Friday, May 5, 2017

Side Effects

I know that I just wrote about changing the dosage of my medication, but now I'm switching to a completely new medication. Let me explain why.

Remember last summer when I had such bad eczema? That prompted me to change everything in my house to hypoallergenic products: every soap, lotion, shampoo, detergent, and solution was now perfume- and dye-free. With those changes in place, the eczema went away and hasn’t come back.

Around the same time, I started having problems with my contacts. I'd already been using a hypoallergenic cleaning solution for years, but I switched to a preservative-free saline for rinsing, and that seemed to alleviate the problem… at least for a while. Around late January, even with the changes I made, I could only wear my contacts for about four (maybe six) hours before they'd get so itchy that I couldn't stand it anymore. In March, I saw an ophthalmologist who said that my eyes were showing clear signs of experiencing an allergic reaction. I told him all of the changes that I had made and he said that I was taking all of the right steps and gave me some steroidal eye drops to reduce the reaction. I used the drops for a week straight before attempting to wear my contacts again. The next time I wore them, I was able to go the whole day without discomfort, but only for one day. On day two, I was back to being itchy to the point of not being able to keep my eyes open. Since then, I only wear my contacts for short periods.

Even more worrying, since December, I've had something like five sinus infections. I've been on so many rounds of antibiotics that I'm a little worried that I'm going to become resistant. I've also missed four days of work this year. That may not seem like a lot, but I've gotten teased from my coworkers because I never take any time off. Other than for Thanksgiving and Christmas, I just keep to my normal schedule, so taking that many sick days in such a short period was shocking. It was also troubling because I went from being healthy to being unable to exercise on a regular basis, something that I'd come to rely on to keep me sane.

Because of the problems that I had with my contacts, when I got my annual bonus this year, I looked into getting Lasik surgery and even had consultations at two separate locations. I talked about everything with Leah and we decided that I should wait until after the wedding before we plan something so expensive, though I decided to pray about it just to be sure. I felt like I hadn't explored all of my options and I thought that I should look at the side effects of my epilepsy medication.

So I did.

What are the major side effects? Allergic reactions (including rashes) and flu-like symptoms. I thought that match up too well with what I was going through to simply be a coincidence. I called my neurologist about my discovery and she was not convinced. To be fair, I hadn't told her about all of these problems before because I didn't think it was related to my medication. Plus, the fact that I had been on the new medication for a while before the side effects showed up. So she was understandably reluctant to prescribe a new medication, but I cajoled her into trying what is now my third medication.

(Quick aside: I've been referring to my medications on this blog by their generic names because I like avoiding proprietary eponyms, like calling any kind of lip balm Chapstick or any brand of tissue Kleenex. But whenever I tell doctors or nurses about what medications I'm taking, they ask for me to clarify with the medication brand name. So from now on, I'll refer to my medications by the names everyone recognizes. Levetiracetam, the first medication I took, is Keppra; oxcarbazepine, my last medication, is Trileptal; and divalproex sodium, my new medication, is Depakote.)

Because of how anti-convulsants work, I have to gradually start the Depakote as I gradually stop the Trileptal or risk what the warning labels call "non-stop seizures." For this first week, I'm going back to my old Trileptal routine of one dose in the morning and one in the evening while adding one dose of Depakote in the morning. Next week it'll switch, with two doses of Depakote and one dose of Trileptal in the evening. In two weeks, I'll maintain the two doses of Depakote and reduce my intake of Trileptal to once every other day. After that, I'll stop taking Trileptal completely.

Depakote has its own list of side effects which I'll be on the lookout for. Most prominently is the risk of liver damage, which was also a risk with Trileptal. That means quarterly blood tests to make sure that the medicine that keeps me from seizing doesn't also kill me. The other most common side effects are headaches, nausea, drowsiness, dizziness, vomiting, stomach pain, and (ironically) tremors. There may be other side effects that I'll encounter from the Trileptal and the Depakote interacting, but those will be short lived. So far, I was nauseated for less than ten minutes when I first took the Depakote yesterday, but that was it. I don't want to have the same problem as before where I didn’t connect my ailments to my medication, so any time I have any medical problem, I'm going to check it against the list of side effects.

Managing my epilepsy has not been easy, and I'm still encountering new challenges, but I'm living with it and not letting it get in the way of the rest of my life. Anyone else think I should be on a motivational poster?

Monday, May 1, 2017

Successful Transition

I've been taking my medication at the increased dosage for about a week now and I've had some trouble adjusting. At first, I was exhausted all the time. Well, it felt that way at least. I was constantly dragged down by the kind of fatigue that made me feel like I had low blood-sugar and needed to take a nap -- while eating would lessen the feeling for maybe an hour, I wasn't able to fall asleep during the day and I often had trouble sleeping through the night. Even stranger, I had what I described as a "floating feeling," wherein the top of my head felt like it was floating above me (not detached from the rest of me, just that the floating sensation didn't extend down to the rest of me). However, all of these weird feelings lessened on Saturday and on Sunday, I felt completely normal.

I'm grateful that my medication is working properly again and I can live my life without having to worry about my epilepsy. Hopefully the current dosage will be a longterm solution and I won't have to keep increasing the dosage every year.

Wednesday, April 26, 2017

Aphasia Strikes Again

On Monday, at about 3:30 in the afternoon, with about ninety minutes left in the work day, I had an aphasic episode. I've had episodes like this plenty of times before, but this time I was medicated and I wasn't in the middle of transitioning to a new medication.

When it hit me, I was listening to a podcast and immediately lost the ability to understand anything that was said (I recognized all the words as English, but I had no idea what any of it meant). I also felt exhausted and struggled to stay awake -- not that it mattered since I wasn't able to read or write while I was in the throws of the episode. After about twenty minutes, I was able understand what I was listening to, but I was still exhausted and couldn't concentrate. After about five minutes of futilely trying to be productive, I stood up and walked over to the desk of my boss, Magda.

She was talking with one of my coworkers, Chelsea, so I waited for a break in the conversation before speaking up. Before I had the chance to interject, Magda looked up and asked what was wrong (apparently, the feeling of extreme exhaustion was all over my face). I explained what happened, describing aphasia as a kind of micro-seizure, and said I needed to go home. She was completely understanding and Chelsea offered to drive me, which I declined -- I've had aphasic episodes while driving before and never blacked out, so I figured I was fine.

As I drove home, I talked to Leah on the phone. She also expressed concern about me driving while in my fatigued state, but I assured her I was fine. Almost on cue, I felt another aphasic episode begin before evaporating (I can feel them just before they hit, though sometimes they pass). She told me I was lucky and that I should have accepted Chelsea's offer for a ride.

The next morning, I woke up and felt sick. It felt like I had the flu and I was physically weak. I worked from home, though I was not terribly productive. Thankfully, I felt better this morning and was able to put in a full day at the office.

After talking about what happened with my neurologist, she recommended increasing my medication dosage. We increased the dosage for a few weeks last year when I first transitioned onto oxcarbazepine and it made me really drowsy. My neurologist thinks that this time I'll handle it better since my body has acclimated to the medication, but if I feel overwhelmingly tired like I did before, she has a supplemental medication in mind that we can try. For now, we're going to wait and see if simply increasing the dosage will be sufficient.

Perhaps I was foolish to think that my epilepsy problem was solved since it was under control. Maybe my life will be segmented by periods of being in control, punctuated by times when I have to look for new solutions. While I'd rather not have to worry about my epilepsy, it's under control for now and we have a possible remedy lined up if I start to show symptoms again, so things are still pretty good.

Friday, May 27, 2016

The Difference

Have you noticed anything about my blog post recently?  In the past few weeks, they've been frequently late and noticeably short (it's weird to think that it wasn't that long ago that I would write long essays just because a topic was on my mind).  The fact of the matter is, I've been exhausted lately and it's been getting progressively worse.  It's gotten so bad that I haven't been able to make it to the gym regularly in nearly a month -- and this week, I couldn't even make it there once.  I assumed that I wasn't getting enough sleep, but even after several days of going to bed early every night, I was still sleepy all the time.  Yesterday, I saw a connection I missed before: my new medication.

While I still feel that the oxcarbazepine is helping as far as my depression is concerned, I can't really enjoy it because I'm always pooped.  I talked to my neurologist today and she recommended that I scale back my dosage, to help take the edge off that side effect.  She also recommended that I talk to my regular doctor about exploring other options, including seeing a psychiatrist.  I suspect that she's a little frustrated that I asked to switch medications just a couple of months ago (she even said that fatigue is a better side effect than depression), but what I'm dealing with is seriously affecting my life, including my productivity at work.  For now, I've lowered my dosage according to her suggestion and she's ordered another round of blood work to see how my liver's doing.  I'll call my doctor on Tuesday and I guess we'll go from there.

I realize that when it comes to required medications like anti-convulsants, there's rarely a perfect fit; it's usually a matter of picking which side effects you hate the least.  Maybe it's time to consider levetiracitam again, but combine it with an anti-depressant...

Monday, May 2, 2016

New Effect

An interesting side effect of my increased oxcarbazepine dosage is that I get dizzy in the evenings.  Because each tablet is 300mg, I take one tablet in the morning and two tablets in the evening.  Apparently that double dose in the PM is enough for me to experience one of the lesser side effects.

While the dizziness is pronounced, it doesn't last that long: I'm usually feeling fine in about three-quarters of an hour.  However, that does mean that I have to make sure I take my evening dose only when I'm in a place where I can sit down for nearly an hour.  Still, I'll take a minor inconvenience once a day to my whole life being a mess most of the time.  I'm still very happy that I made the switch, is what I'm saying.

Friday, April 29, 2016

A Reasonable Solution

I talked to my neurologist about the aphasia I experienced and she increased my dosage of oxcarbazepine from 600 mg a day to 900 mg a day.  Since I increased the dosage, I have not had any aphasiatic episodes, though it's only been two days.  Still, I have reason to be hopeful.

Wednesday, April 27, 2016

A Worrying Series of Events

I've been on my new medication, oxcarbazepine, for nearly a month.  For the most part, I feel great.  It's the other times that have me worried.

While my depression has mostly dissipated, my anxiety has taken the opportunity to rear its ugly head again.  I don't know if my anxiety was always there and I just didn't notice it because of the depression or if only one can be experienced at a time, but whatever the case, I'm forced to maintain behaviors that will help me control my anxiety.  Thankfully, many of the same behaviors that work against depression also work against anxiety.  Also of benefit, while my anxiety has returned, I don't believe it's any stronger than it was before I started taking levetiracetam.  As far as my emotional health goes, I'm happy with the change.

Unfortunately, that's not the only issue.  Yesterday while I was at work, I experienced aphasia.  It was relatively mild, but it has me worried.  While I can chalk up the seizure I had two weeks ago to the transition, can I do the same with the aphasiatic episode?  I called my neurologist, but I haven't heard back from her yet (she works out of the local hospital and they suck at delivering messages).  Maybe the episode was due to something we can fix (maybe my dosage is too low or I have stop eating cheese or something), but it definitely has me worried.

My concern lies not only with the fact that aphasia may be a precursor for seizures, but also that I may have to switch back to levetiracetam and return to struggling to live my life.  Hopefully, I'll hear back from the doctor soon and we'll be able to solve the problem in a way that doesn't require me to switch back.

Wednesday, April 13, 2016

Number Four (Maybe)

I think I had another seizure.  I was asleep at the time and I didn't bite my lip or tear any muscles this time, but I woke up around 3 in morning on Monday feeling, well, feeling like I had just had a seizure.  One thing that was different about this time compared to the previous seizures is that I was medicated when it happened.

So, what caused it?  I think this time it was caused by low blood-sugar.  On Friday, I was still dealing with the worsened depression that came on when I started transitioning to the oxcarbazepine and I ordered a pizza and ate the whole thing.  I felt awful (a bit emotionally, but mostly physically), so I decided to try doing a juice cleanse to help pass the excess food.  In doing so, I was starving most of the weekend (I broke from the diet and got a vegetarian burrito on Saturday).  It was the worst on Sunday, but I drank my last portion of juice right before bed with the hope that I would be okay.  I wasn't.

After I woke up, I couldn't sleep for about an hour or two (when I'm recovering from a seizure, my brain becomes more alert while simultaneously becoming exhausted -- it's not fun).  I emailed my boss and told her what happened, adding that I would need some time to recover.  Even though she approved my absence, I made it into the office after lunch.  I had fitfully slept the rest of the morning (after making sure to eat some cereal and fruit to bring my blood-sugar to a safe level) and I was still pretty of out of it, but I'm glad I made it for the second half of the day.

While I think I was at risk because of the transition, I will watch my blood-sugar moving forward.  And in case you're wondering, the juice cleanse didn't even work.

Monday, April 11, 2016

Rough Start

As I posted about on Friday, I'm in the process of changing my seizure medication.  Even though I've only been taking the new medication for just a week, I can already tell a difference.

When I first started the change, my depression actually got worse.  I had trouble sleeping, I was constantly distracted, and I couldn't find enough motivation to go to the gym even once during the week.  I was starting to wonder if I had made the right choice to make the change.  And then on Thursday, I was able to do some light cardio at home in the morning.  I still didn't make it to the gym during the week, but I went on Saturday.  Saturdays have been hard for me for a while, but I did just fine: I exercised at the gym, I ran my errands, I even hung out with my friend Erin.

I didn't expect that changing my medication would have such a profound impact, but so far, I'm happy I made the change.

Friday, April 8, 2016

Transitional Period

I started my new medication on Monday.  Instead of levetiracetam, I'm switching to oxcarbazepine.  Because of how anti-convulsants work, I have to ease off the old medication while starting the new one.  For this first week, I take the oxcarbazepine every morning and evening while I take only levetiracetam in the evening.  Next week, I'll take oxcarbazepine just as frequently, but I'll take levetiracetam only every other evening.  The week after, the transition will be complete and I'll only be taking oxcarbazepine.

Why the transition?  While I don't know the mechanics behind it, one thing that all anti-convulsants have in common is that if you stop cold turkey, you risk having non-stop seizures (which is why the two seizures I've had since I was diagnosed with epilepsy were when I didn't get my prescription filled in time).  In fact, I made the mistake of taking the levetiracetam in the morning on Wednesday (I've gotten used to taking my medication in the morning and I wasn't thinking and kept up the habit), so I had to go longer without a dose -- while still taking oxcarbazepine regularly. Thursday afternoon at work, I started to have a minor aphasiatic episode.  Thankfully, nothing happened: I just felt it coming on before it dissipated (similar to how migraines are often preceded by halos).  I made sure I took both meds on Thursday evening.

So far, I can't say that I notice a difference.  I haven't had any seizures, but I still feel tired in the afternoon.  As for my depression, I won't be able to say if there's a difference until the weekend.  Hopefully, I'll be more motivated than I have been the last several months.

Monday, March 7, 2016

Incremental Improvement

Friday evening after work, as I was driving home, I felt myself starting to get anxious.  I had no plans for the weekend and that usually ends in disaster.  I hadn't slept well the night before, so I decided to skip the gym, which made it easier to make unhealthy choices regarding what I ate for dinner.  Still, I reigned things in, ate a modest dinner, and went to bed early.

I woke up on Saturday feeling better, but I was still tired, despite getting plenty of sleep.  I got up and ate breakfast,  but I never felt like I really woke up.  After fighting the fatigue for a couple of hours, I took a nap.  I struggled to wake up when my alarm went off, but I eventually pulled myself out of bed.  I ate some fruit to raise my blood sugar and get me moving, which helped, but I still felt weird.  I wanted to make it to the gym or even just do my grocery shopping for the week, but I wasn't able to leave my apartment even once that day.

After the last day-and-a-half, I was afraid that I wouldn't make it to church on Sunday, so I fasted that I would attend my meetings the next day.  Thankfully, that helped and I made it to church in time for Sacrament meeting.  I was still feeling anxious and I wasn't able to participate in any of the lessons, but I was there, which is better than I managed last week.

I've been praying a lot about the upcoming change to my medication and I feel that it's a good move.  I don't know if the next drug will be what I stick with for the long haul, but it will at least mark the beginning of my investigation.  I know that if it's a struggle for me to just function on a day that I don't have work, there's something majorly wrong.  Still, at least I left the house and made it to church; that alone make this weekend a win.

Wednesday, March 2, 2016

Experimenting

I talked to my neurologist yesterday.  I explained to her what I've been going through and how I wasn't sure if the levetiracetam that I've been taking for over the last two years was affecting me negatively.  She listen to me and offered an alternative anti-convulsant that is also sometimes used to treat depression.  I'm a little wary of taking an antidepressant with my normal medication, but one medication that works as both?  That doesn't sound so bad.

Now, just because my doctor approved the medication and her office called in a prescription for me, it's not an easy change to make.  First off, the new medication does pose the risk of liver damage, so before I can begin, I have get some blood work done (along with every six months thereafter to monitor my vitals, particularly my liver).  When the results deem me healthy enough, I can slowly make the transition -- in addition to drowsiness and increased anxiety and depression, levetiracetam also has this side effect (from the primary manufacturer's website): "Stopping a seizure medication all at once can cause seizures that will not stop, a very serious problem."  While I think that calling "seizures that will not stop" a "very serious problem" is putting things a bit mildly, it's also misleading: while many anti-convulsants have this effect, not every one does.

Now I'm just waiting for the paperwork so I can go to the lab for the blood work.  Once I'm cleared, I'll begin the transition, which will take two weeks.  While I am optimistic, I also need to watch for any other potential problems.  Even if my depression eases up when I switch, there may be other changes to my mood or behavior.  But nothing will change unless I try something different, so here's hoping this new medication works better.

Monday, February 29, 2016

Imbalance

I saw a new neurologist on Thursday.  This was the first time I'd seen a brain doctor since I was first diagnosed with epilepsy back in December of 2013, so it was nice to get a second opinion.  My doctor said that based on my history, that my current medication (levetiracetam) appears to be working well and that as long as I don't miss a dose, everything should be fine.

Since the meeting, however, I've been thinking more and more about the side effects of my medication.  The most common one is drowsiness and/or sleeplessness, which I definitely deal with, though I don't know how much of that is due to the meds -- I have a sleep study scheduled for a week from today, so maybe with the right kind of CPAP machine, I'll be fine.

The next most common side effects are increased levels of anxiety and/or depression.  This is the one that has me the most concerned.  Right after I started taking levetiracetam (or Keppra, if you want to use the brand name), I went through the worst depression of my life.  The problem, however, is that the circumstances of my life were pretty depressing: I had just been diagnosed with epilepsy, I had lost my job, and my estranged wife refused to communicate with me when I turned to her for emotional support.  It was a tough time in my life.  Since then, I've gotten a much stronger grip on my life and my emotions.

But I still struggle with anxiety and depression on a regular basis.  I even picked up a new hobby as a way to combat these negative feelings (which has helped quite a bit).  Even so, I was unable to find the motivation to leave my apartment on Saturday and when I went to bed, I had a panic attack for a couple of hours.  This resulted in me sleeping through my alarm and missing church the next day.  I wasn't scheduled to teach, so at least I wasn't shirking any responsibility, beyond that of keeping my basic covenants.

Since I couldn't sleep anyway, I looked up how often people deal with these sorts of side effects and I found the answer: around 0.8% of users.  Less than one percent of people using levetiracetam feel anything other than fine.  And even if I'm one of the unlucky few that got more than he bargained for, other anti-convulsants have their own risks (many of which include possible liver damage).  One big problem is that I don't know if the meds are exacerbating a problem that already exists or if I'm just not handling my brain chemistry properly.

The first step is to follow up with my neurologist.  I have an appointment to see her again in July, but I'll send her an email later today (I'd have done it already, but I left her business card in my desk at work).  Maybe she has a go-to medication that can take the edge off the side effects.  Maybe she'll ask me to see a psychiatrist, which I may want to do anyway.  Maybe she'll ask for more test to be conducted.  All I know is that I've been dealing with these problems for a while now and I just want my life back.