Goodbye, Wine

A few weeks ago I gave up coffee. I hadn't planned to, but one day I just didn't happen to have any and the next I woke up and thought, "I should just stop drinking it." I've never really liked coffee... I only drank it for the caffeine. Caffeine can lower the seizure threshold (i.e., make me more susceptible). I'm better off without it. After a few days of headaches I was good to go, and I don't miss it. I can always have decaf with my PSL, right? ;)

Fast forward to this week. I've never been a big drinker, but I've always had a good tolerance for alcohol and I do love a glass of wine. But ever since June I have dramatically reduced my alcohol consumption for the same reason I gave up coffee: alcohol lowers the seizure threshold. It can also adversely interact with my medications and reduce their efficacy.

To be clear, neither the doctor nor the pharmacist told me not to drink alcohol while on these meds, but I was reducing anyway.

Even so, it seemed to be interacting. And then last weekend I had a few more drinks than normal. And this week I had five partials over two days. Coincidence? Probably not. Everything I have read online and the people I have chatted with have agreed: it's best just to cut out the alcohol altogether, at least until I'm stable.

In addition, my meds are increasing again. I saw the neuro yesterday and told him that while I've been mostly clear, I'm not 100% yet and am ok with increasing the meds. I would rather do that than try a different medication with unknown reactions. He agreed. So we're upping the Levetiracetam to 3000mg/day, which is the highest recommended dosage. If this still does not work, we will have to try a different med... so cross your fingers that this dosage does the trick.

Meanwhile, still no driving until further notice. :(

As much as I will miss my wine, driving and stabilizing are more important.

Various Storms and Saints

Last week I shared about what a hard time I was going through (thank you for all your support).

This week I had a bit of a breakthrough, while listening to this song--so again, you can listen while you read (sorry for the live version--couldn't find an album version on youtube)

It's one of those songs I've heard many times but hadn't really listened to until now. The line that caught my attention was:

Don't make the mountain your enemy; get out, get up there instead.

I'm not usually the kind of person to shy away from a challenge, but for nearly a year this one has beaten me down and I realize now that I was making the mountain my enemy. Not only is that not helpful, but it's not my style. I love my mountains. I love the challenge. I love achieving the summit, and the views, and the healing, and the adventure.

Also, I wasn't completely honest with you last week. I had at least three partials over five days (possibly more if they were happening while I was sleeping). That is why I was SO discouraged. I was keeping that to myself because I wasn't sure whether I was going to tell the doctor about it, but I've decided that I need to be honest. 

People just untie themselves, uncurling like flowers

So here I am:

• I accept that I have a chronic health condition that can be managed, but not cured
• I accept that I will be on medications for awhile, potentially forever
• I accept that those medications will fuck with my head sometimes, will make me depressed sometimes, will make me tired sometimes
• I accept that in those days or weeks when I am tired and sad, I can give myself a break and have some downtime
• I accept that I can't go 100% all the time
• I accept that I can't drive for awhile (ever?)
• I accept that not everyone in my life will understand
• I will love my body and brain
• I will focus on the things I can control
• One step at a time, I will summit this mountain. And I'll build my business. And I'll build my life, whatever it takes.

This week's gratitudes to go Lianne and Andy, for getting out on the trails with me. :)

Straight Lines

This morning on the bus to the office I listened to this song on repeat--so you can listen while you read my post: 

I won't lie, it's been a rough week. Rough month, but mostly rough week. I posted before that I was in a bit of a funk, but this week it took a turn toward full-on depression. Brain fog. Exhaustion. Low energy. Anxiety. Many tears.

This happened before, shortly after I started on the Levetiracetam. It lasted a few days and then passed. This time I'm not even sure if it's the med or if it's just life in general. Probably both.

Today feels a bit better but we'll see what happens.

Part of the problem is that I've been feeling as though my episodes are coming back (or at least trying to). It's mostly been when I'm sleeping. I've been dreaming about having them, and then it wakes me up and I feel like I've had one. But I don't know if I actually did or if I just dreamed it. Then headache and general feelings of crappiness follow.

Last night instead of dreaming about seizures I dreamed that I was driving in my car but I had no control over the car and crashed through forests and then into water. Then woke up.

General theme of my life right now... no control. I said to someone in a text the other day that I feel as though every area of my life sucks right now, so I put everything I can into my business because that's the one thing I can at least partially control. 

In any case, it's always the people around me propping me up, so I am going to start naming names in these blog posts. Hopefully over time everyone who has supported will get a shout out (but if I miss you please blame the meds and the brain fog!). This week's gratitudes are for:

- Danielle, for letting me cry to you on the phone and telling me to call sooner next time
- Graeme, for making me laugh and distracting me with interesting discussion (let's avoid the nihilism next time though!)
- Claudie, for giving me permission to lose it the next time someone tells me I "look good" or "everything is going so well"
- Lisa, for telling me I'm strong when it's the last thing I feel

I love you guys; thank you. "If you keep talking, then I'll keep walking in straight lines."

Six weeks and counting

Yesterday marked six weeks of no episodes, not even little ones. This is my longest stretch now since this started and it gives me hope that the meds are working.

But I'm not out of the woods. There is always that nagging thought in the back of my mind that it could start back up again at any time. Anyone who hasn't been through this might consider that negativity, but in fact it's simply realistic. I've read about and heard from so many people whose meds worked for awhile... months, even years, and then randomly stopped working one day. So there is never an end point, only management and hoping for the best.

Also I've been in a bit of a funk for the past couple of weeks. I don't know if it's because of my meds or if it's the other stuff going on in my life, but I've been feeling sad basically every day for the past two weeks. And that makes me tired. And that makes me just want to curl up on the couch and watch netflix... not good for running my business.

Still spending 4+ hours/day on transit (huge thanks to those of you who have given and/or offered rides!). Yesterday I decided to work at home. Didn't get much work done because I was too tired and sad, but it was a success to avoid setting foot on transit for one day.

I apologize for a bit of a downer post. I am definitely happy to see the six-week mark pass, and hopeful that I will be able to drive again soon.

Four Weeks, and other thoughts

It's been four weeks since my last episode. I'm still not counting my chickens... that will start at 6 weeks. But we're on the right track.

All the med increases have continued to make me exhausted, but that is starting to ease off. Thursday I woke up feeling better, more energetic, and happier than I have in ages.

One of the cool things about having a hyperactive temporal lobe is that periodically, even when I'm not having any episodes, I will have a flash of a random early childhood memory that I haven't thought about in decades. Yesterday I texted my mom, "who did we used to visit in Chetwynd?!" because a flash of a memory had popped into my mind and I could not place it. This memory is 30+ years old and not something I've thought about until now. These little random memories just pop up here and there, ever since this started--a place or a face or an image from when I was little. Or sometimes when I am having an episode it will also include an early memory that I can't place. It's weird and fascinating at the same time--our brains are so interesting!

My wine tolerance also seems to be improving as I adapt to the new med dosage (yay!). I still get tipsy earlier but I don't feel gross like I did when I first started the meds.

I've been hesitating to admit this part out loud: sometimes I can't find words, or don't remember details or conversations. I find myself forgetting what I talked about with people, or losing my train of thought in the middle of a sentence. I am hoping this improves as I get things under control, because it's scary. I'm focusing on taking better notes from client meetings, etc., but it's still freaky that sometimes I can't find a word. I've always prided myself on my vocabulary and language skills, and so when words disappear (even though temporarily) it scares me.

Onward.

Bad Combination

As of Friday, I'm up to 1000mg of Levetiracetam in the morning, and 1000mg at night. This is the result of the latest increases. The max is 3000/day, so I'm about 2/3 to the max.

The bad news is that the med makes me SO TIRED all the time. But only for a few weeks after each increase, so that should go away in a few weeks.

Meanwhile, the cannabis oil increases my appetite. No wonder I'm having a hard time with my weight. One makes me tired, and one makes me eat. Meanwhile I'm still not running due to my hip issues.

I can't sort all this out instantly but this is going to be my next goal... I think once I switch to the new CBD oil (which has way more CBD and way less THC than the one I started with), that will help the appetite problem. At the same time, the med tiredness will decrease in a few weeks. And then I need to get in for some IMS to take care of my hip issue so I can run again.

I haven't had any episodes to record since June 24, so a little over two weeks. This is good but doesn't necessarily mean anything since I've gone up to a month without anything to record (March's log is entirely blank) and then it comes back. The milestone I have in my head is 6 weeks... if I can go that long without anything significant, I will consider that success.

I was volunteering at Kneeknacker yesterday and it made me sad that I can't run and am getting fatter and losing fitness. This time last year I ran Buckin' Hell 50k and was feeling great. I know I can reverse this and that it won't happen overnight, but it's been 10 months since all this started and I'm frustrated that I can't be on the trail. So today I'm just going to go up to Quarry Rock. It's not much but better than nothing.

Onward!

"This is good news"?!

After my friends all said to keep harassing the neuro's office until I got a response, I called again on Monday and had an appointment for Thursday. Finally!

The neuro said that it's "good news" that I had the full seizures. I said, "how is it good news?!" and he said because now we know for sure what is going on, and that we're on the right track. Before this, he was just going by my descriptions of what I was experiencing and feeling; since my tests showed nothing and the doctors hadn't witnessed anything, they had no solid evidence that it really was partial seizures. Now we know.

I asked why the meds didn't prevent the progression, as I thought they were supposed to. He said my dosage was still too low. We had originally started with quite a low dose (which I knew) and were in the middle of increasing when the seizures happened. So it's going up again. I'm not yet at the max allowed dosage for my meds and since I'm tolerating them well (no bad side effects), we'll keep with it until either it works or we hit the max and have to try something else.

No driving until at least September. He said 6 months seizure-free and I protested because the ICBC website says 3 months if it's your first time having seizures. He said that technically the partials count (which means I was lucky to be driving that whole time anyway). But he also said we can re-assess in September and see how things are going. I miss my car and it does make my life more difficult, but if it does turn into 6 months it's not the end of the world.

Overall, he seems confident that we will sort it out and that it will be manageable. He said I'm going to be ok. I needed to hear that.

People keep asking how I feel, and I don't really know how to answer because it cycles so much. Some weeks I feel fine, and other weeks I don't. This week was fine, but next week will be 4 weeks from the big ones, and I tend to be in a 4 week cycle so it's possible that I will see increased activity next week. We'll see. I'm still exhausted all the time. This is partly due to med increases and partly because life is draining right now, so I'm focusing a lot on rest and self-care. Less caffeine, more naps, lavender on my pillows, that sort of thing. :)

Onward!