One Week

My last post was celebrating that I was once again allowed to drive.

That lasted less than two weeks.

And then this happened:  

Monday, Dec 19 - I couldn't sleep that night. No idea why--it's just the way my body works. Sometimes I can't sleep. I was chronically sleep-deprived for 16 years, and ironically this finally improved last year when I started on iron supplements, which only came about because of the zillion tests they gave me when my partial seizures started. So overall I've been sleeping a lot better, but there are still nights when I don't sleep well. This particular night, I slept a total of maybe 3 hours, and then had to get up to go to my business coaching.  

Tuesday, Dec 20 - I arrived at my business coaching for our 7:45 start. The room was cold, so I kept my coat on. We were maybe 15 minutes in, and I was mid-sentence when I had a generalized seizure. This one was different from the ones I had in June. In June, both of my seizures started with partials and progressed. This time, I don't remember having a partial. I don't remember anything. I literally went from mid-sentence to waking up in the hospital. I remember nothing in between except blurry outlines of faces looking down at me, and Katharine from my group saying she was coming to the hospital with me. I don't remember the ambulance, or the paramedics, or being moved from the building or into the hospital. Completely and fully out of it.

Once in the hospital (the big one in Surrey, since that was nearest) I was still foggy but gradually started to come back around. It took some time though. I'm pretty sure I called Katharine by the wrong name at least once. They were asking me questions like what day it is and what meds I was on, and my doctor's name, and I couldn't answer them at first. I was so confused and could not think straight or remember anything. Meanwhile they were sticking all sorts of needles in me. I was only partially aware of it at the time. I remember them telling me they were going to give me fluids, so they stuck an IV needle in my left hand (there was already one in my right--I don't know what that one was for). They were also trying to do blood work but were having a hard time finding a good vein. After all was said and done I had 6 holes poked in me, two of which were IV needles in my hands, which left some lovely bruises that are just fading now, a week later.

They were really busy that day and there were times when I was left alone, and I was crying so much that a couple of nurses finally checked on me and gave me some tissues.

The ER doctor was really good and much more personable than the one I had talked to last time at St Paul's. I don't know if this one was a neurologist or just a regular ER doctor. He asked about my meds, and who my neurologist is, and about my history of seizures. My head was just clearing enough that I was able to answer his questions. I told him that I hadn't slept the night before, and he said that was most likely the trigger for this seizure. I gave him the name and number of my neuro and he said he'd fax over their records from that day.

At some point in that time, Katharine had managed to contact my brother Isaac (did I give her his info? I don't remember). Katharine picked up Isaac at the Skytrain and drove him back to my car, which he then brought to the hospital and stayed until I was ready to go. I'm so grateful for both of them. They just took care of it, and me.

At some point the doctors and nurses stopped paying attention to me. I think the doctor had said I could go, but I wasn't sure and couldn't remember. I tried to get someone's attention to ask if it was ok for me to leave, but I couldn't get anyone's attention so I just left. Isaac came in from the waiting area and walked me out, which is good because that hospital is a labyrinth and I never would have found my way out otherwise.

Instead of driving me straight home, we went in to my office briefly. I had to fax something and pick up some stuff so I could work at home. It seems weird now that I went to work at that time. My brain was so foggy, though I didn't realize it at the time. I had a killer headache and was starving because it was now lunch time. So after stopping at my office we also stopped for food, and then Isaac brought me home. I spent the rest of the day relaxing. I felt physically ok, just incredibly tired.  

Wednesday through Saturday - Exhaustion, brain fog, and depression. So much sadness and anxiety. I don't know how much of this was related to the physical toll and how much was due to the hopelessness of the situation. I had JUST gotten my car back, and now it's gone again. I was lonely and restless and wanted company, but too tired to do anything. Cried a lot over those several days. Felt very isolated. Had text conversations with friends which immediately disappeared into the brain fog and were forgotten. Spent a lot of time in bed. Resented Christmas and facebook showing everyone being happy and surrounded by family and friends.

And something else which I haven't talked about in this blog yet: suicidal ideation. This is not something I had ever struggled with until I started on the meds. My neuro has expressed concern about this when I've mentioned it to him. I know he will change my meds if I ask him to, if I feel that I can't manage this. But so far no matter how terrible I feel I just keep telling myself that it will pass in a few days, because it's just the meds fucking with me. And sure enough, it eventually does. But those days are still terrible.

Sunday, Christmas Day - I was still feeling horribly sad. I had agreed to go to dinner with Isaac and Karen, but was having second thoughts because I was feeling so shitty. At the same time I knew that going out with family would probably help me feel better. They stopped by in the morning to drop off my Christmas gift. Isaac had sent me an Amazon gift card that morning, but also brought over "something to unwrap". It was a painting that he had done himself, because I had mentioned that I needed something for the wall by my desk. I had said that I wanted something meaningful, not just random, generic art. So he painted me something meaningful. It's based on a picture he had of local coastline, and shows what makes me happy. Of course the gift made me cry, especially given how thoughtful and sweet it was.

I did end up going for dinner later with Isaac, Karen, and Rob. And it did make me feel a lot better.

Isaac's painting:

Monday, Boxing Day - Day 7, and I finally started feeling myself again. I got enough sleep, had energy, and felt emotionally stable and hopeful again. In June when the first seizures happened, it also took to day 7 for me to feel myself again--so I'm assuming that's my norm. All of the brain fog from the past week cleared at once and my mind was racing all day, thinking about what I want to do in 2017 and how I can make it a better year. Part of that is getting control of this shit. So I went online and requested a dozen books from the library about Epilepsy, including general knowledge, lifestyle, and alternative and dietary treatments.

I also decided that when I see my neuro again I'm going to ask him to add a medication--but to make sure that it's one that will not make the depression worse. I've heard good things about one called Lamictal, used in conjunction with the one I'm already on (Keppra). My next appointment isn't until April but they may ask me to come in sooner after they get my report from the Surrey Hospital. We'll see. Otherwise I'll just keep doing what I'm doing until I see him again.

If you made it through this long post, congrats. :P I wanted to be sure to document everything so that I will have it on record for future. I don't want to forget anything. 

Merry Christmas to me!

My last blog post was celebrating that I was two months partial-free.

And then I had a cluster... in the week after that post.

But that was the only cluster over the past few months.

Today I had my neuro appointment and I told him that I've only had one cluster in the past three months since I saw him last. I also mentioned that it's been six months since my hospital visit (i.e., six months since I had the generalized seizures).

So he's letting me start driving again!

He said that as long as symptoms don't start to worsen again, I should be ok to drive.

Also, no med changes for now. I just keep doing what I'm doing for the next six months and then see him again to re-evaluate. Unless something changes for the worse, in which case I'm to stop driving and update him.

I also talked to him about how I've virtually stopped drinking (only two drinks in three months) and have dramatically reduced my caffeine intake (from 1-2 coffees per day to 2-3 per week). He said that's fine and that I should be ok with alcohol as long as I keep it down to 1 drink per day.

All good news!!

Champagne tomorrow! (but just one glass for me ;)

Vindicated

Today's song came on while I was running today:

It has long been in my playlist and has given me a boost many, many times.


Hope dangles on a string, like slow-spinning redemption
winding in and winding out, the shine of it has caught my eye
And roped me in so mesmerizing, so hypnotizing
I am captivated, I am vindicated


Today is two months with no partials!


That's a major milestone. I'm not out of the woods yet (not by a long shot) but I'm moving in the right direction.


And now that I'm finally past the exhaustion/fatigue/depression phases of the latest medication increase, I'm actually starting to feel good again. Energy is better and I'm feeling more positive.


Having decided to be done with the crappy year that 2016 has been, I personally celebrated New Year's on Nov 1 instead of January 1. Starting over. Feeling better. Setting new goals and getting myself back on track.


I've run twice so far this week, Sunday and today. My goal is to do Tues/Thurs/Sat/Sun for awhile, until I get some fitness back. Maybe do some short races in the early spring, just to give me some short-term goals.


Some thoughts on today's run:


For awhile I've been noticing that my balance and/or proprioception seem to be a bit off. Both are potentially neurologically related, which has me wondering if it's connected to my neuro issues. I mostly notice it when I'm running and when I'm descending staircases. I feel as though I don't trust my feet to land where they're supposed to, and on stairs I'll hang on to the railing and watch my feet to make sure they're landing properly. I don't know if this is a neuro thing or if it's because of having sprained my ankle so badly (twice) last fall, and I've been really cautious and paranoid about landing on it wrong again. I'm going to mention it to the neuro though and see what he thinks. Maybe there's a connection, maybe it's my imagination--either way it won't change what I do because running and walking can only make something like that better, not worse.


Also, today I passed one man in a wheelchair and a blind man walking with a cane. It made me grateful that even though it's been a tough time, I still can run. As long as I still can, I will.


This week's gratitude shout-out goes to my family. I have mentioned it before, but my family has been so incredibly supportive through this whole journey, in various ways. I'm so incredibly glad to have you guys. I can't imagine trying to do this on my own. <3

dragging

I've started to write this post three times over the past week and a half, but haven't known what to say.

I would just like to stop being constantly exhausted, sad, and stressed.

Not sleeping properly, not eating properly (all fast food and convenience food since the flood a few weeks ago). I want to sleep in my own bed and have my own space again. I want my car back. I want my health back. I want to move back to the north shore.

Can't control any of it, so I just keep telling myself it will get better....  to be honest I don't always believe myself on that, but what else is there to do?

update: There seems to be a pattern. The depression comes roughly 6 weeks after each increase in the meds. I don't know why it takes 6 weeks to hit, but that's what it seems to be. The good news is that it passes. The bad news is that I'm now at the highest dose so if it doesn't "work" I have to try a different med, starting all over again with new side effects. :/

One Year

One year ago today, I had my first four partial seizures.

Of course, I didn't know at the time that that's what was happening, but it has changed my life.

In that year, I've had blood work done 9 times. Three trips to the ER (one in an ambulance). Two generalized seizures. Two different medications. CT, MRI, EEG, ECG.

Stopped driving, stopped alcohol, stopped coffee.

Stress... oh the stress. Never knowing when my symptoms will return or how bad they will be this time. Will I end up in the hospital again? Will I ever get it controlled enough to be able to drive again? How many meds will I have to try before I get it managed? (If ever?) How do I build my business when some days I can hardly function? Am I having seizures in my sleep? Not sure but sometimes I wake up feeling like I did.

And then the emotional and physical toll. I hardly remember anything that happened in the weeks just before and just after my generalized seizures. It's like my brain was in a fog for that whole month; there were entire conversations and meetings that I don't remember having. Exhaustion. Depression. Reduced ability to cope with the stupid little everyday things that shouldn't bother me. I've cried three times this week over things that shouldn't be making me cry. Why? Because my meds were increased again last week and that makes me emotional and tired.

And through all of that, the support of all of you has been what has kept me going (my own stubbornness helps too....).

This morning I was planning to name all of the people who have supported and helped me in the past year, but the list is so long and I'm afraid of missing people. Suffice it to say that I do not take it for granted and I'm incredibly grateful for all of you. I've learned who my true friends are. :)

But I will continue naming the most current/recent gratitudes:

- Roberto - for being a constant breath of fresh air, always making me smile
- Cory - for telling me I'm tough; and when I argued that, for saying "you don't see you" (this also made me cry, but I couldn't tell you that at the time)
- Danielle - for your companionship and endless hugs
- Graeme and Fritz - for giving me a safe space and laughs and for encouraging (at least tolerating) my requests for things like "orange juice that looks like a screwdriver" ;)
- my SamSam for his love, loyalty, and doggy cuddles

Onward!

my "fake screwdriver"

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!

Relentless Forward Motion

It's now been 9 days since my hospital visit. During that time I haven't had any more generalized seizures, though I did have a couple of partials and some mild passing activity.

For the first few days I felt mentally foggy, tired, sad. Not sure how much of that was physical and how much was psychological. Given that my meds have been increasing over the past couple of weeks, it's probably a bit of both. I didn't start feeling "normal" energy again until Wednesday.

Frustration:

• I phoned my neuro's office twice this week, asking if they got the report from the hospital and whether I need to do/change anything. The neuro has not called me back yet, which is incredibly frustrating. The receptionist said he's just been too busy. Clearly he doesn't think that there's any urgency in it, even though I went from partial to generalized, and that's what the meds were supposed to be preventing. Giant change for me, apparently no urgency to him. 
• I can't drive. Wednesday I spent over four hours on public transit.
• I can't run (physio's orders, until my hip issues improve).
• Certain people in my life who I would have counted on for support have failed me, overtly. I have a hard time asking for help, and when I did ask for support one refused it. Another has  ignored the whole issue completely. 

Gratitude:

• Everyone else has been awesome. So much love and support. People have driven me around. People have sent me messages to check in and ask if I need anything. People have spent time with me (which, given how lonely and sad I've been feeling in the past week, is crucial). On Thursday I returned home to find a gift bag at my door, full of chocolate, wine, and flowers.  And my office gave me orchids. I've never had this much social support in my life, and I'm so grateful for all of you. 

Hope:

• I'm going to try the CBD oil. When I saw the neuro a couple of weeks ago I agreed with him not to try that yet until I give the meds a chance, but that has changed now. The meds aren't doing their job, and I'm not ok with just waiting around for the months or years it will take to (maybe) find the right med/dosage. The generalized seizures were a tipping point for me. I'm not wasting any more time and I'm taking matters into my own hands. If the CBD will help, it's worth trying. So tomorrow I'm going to go buy some and see what happens. A specific oil and dispensary have been recommended to me so I will start there. 
• The ICBC website indicates I might be able to drive in 3 months, if I can prevent more generalized seizures from happening. Technically nothing is official yet anyway; my licence is still valid until the neuro tells ICBC to suspend it. But I don't feel safe driving until I'm sure that it's not going to keep happening, so I figure 3 months is a good guideline. 

I cried three times while writing this blog post. I'm discouraged and tired and sad and I just want to be healthy again. But I know what I'm made of, and the old ultra runner's mantra applies: Relentless forward motion.

This Changes Everything...

This week I was feeling some mild activity for a couple of days, but nothing severe. It felt like an "on" week, as in potentially a cluster of my bad ones but they just haven't been as strong as before.
Until yesterday, around 4pm.


I had had a full day of meetings and was sitting down at my desk to write some emails. Mid email, I felt as though one of my stronger episodes was coming on--intense deja vu, feeling like I needed to pause and breathe through it.


The next thing I knew I was waking up from unconsciousness, while being loaded into an ambulance. I had no idea what was going on or why I was there--severe confusion and brain fog for a few minutes. They were talking to me and said, "Amanda is here" but I didn't yet know what that meant either. I remember him putting the IV thingy in my hand, and then I fogged out a bit because I don't remember going from Ambulance to hospital.


Amanda is an advisor who works in my office, and here's what she relayed: Another advisor noticed me having a full-on seizure in my chair. Apparently my hands and feet were shaking (not the whole body) and my face had fallen forward onto my chest so my airway was blocked and I couldn't breath and was very pale. The first advisor panicked and didn't know what to do. Apparently she actually thought I was dead (!) and that's why the ambulance got there SO quickly. Amanda's office is right next to me so she got in there pretty quickly. Luckily, Amanda has lifeguard training and knew what to do. She lowered me from chair to floor and opened the airway, at which point she said I started taking big breaths of air and the shaking stopped. She brought my shoes, keys, and phone into the ambulance and accompanied us to the hospital. She had everything taken care of before I even knew what was going on. I was still trying to figure out where I was an why. Apparently I asked the same questions more than once, and there was a lot of conversation that I don't remember. Also, Amanda said I was flirting with one of the paramedics (I have ZERO recollection of that!). I also had a headache, but they wouldn't give me anything until a doctor saw me. I was also really scared and cried a few times.


In any case, we were then sitting in a bed in emergency waiting for a doctor, but that was taking a long time. I wanted water but they would only give me ice chips. Also, I really had to pee but they wouldn't let me go to the bathroom unaccompanied. So poor Amanda had to accompany to the bathroom (this is a bonding and humbling experience!). I also got a urine sample while doing that.
Amanda asked if I wanted to call anyone and I said my mom and my brother Isaac. We also contacted my landlord to ask her to let Sammy out in the yard for a bathroom break since we didn't know how long we'd be. I knew that Isaac would probably be able to come to the hospital, and also that he could drive me home after if needed (my car was still at the office though). Got ahold of Isaac around 4:50pm but he was driving back into the city from somewhere else, and he couldn't come right away. He was able to get to the hospital by about 6:30pm, and at that point we were still waiting for help. Shortly after Isaac arrived, a doctor came to ask a bunch of questions about what happened, my history, my meds, and my previous tests. He asked a lot about potential triggers, why this might happen today (alcohol, stress, etc.). I had no answer for why it might have changed so suddenly. The only thing that has changed in the past week was that my meds were increased, and that should make it better, not worse (also my meds are still relatively low dose). That doctor said we may have to re-do the CT scan, possibly some other tests, and I may have to stay the night but he wasn't sure. After that doctor walked away to order the tests, I had another seizure. Again, all I remember was feeling as though one of my regular episodes was coming on--intense deja vu, and feeling that this same scene had happened before, and trying to remember. I said to Amanda, "you were in the last one" or something along those lines, because it felt like a repeat of a previous one.


Next thing I know, I'm waking up in a different room, clothing removed, hospital gown on, sticky sensors stuck all over my body. Isaac was there, and I remember someone doing something on my left side while Isaac was standing on my right side, holding my hand. Isaac said they gave me meds through an IV but I don't remember that. I thought someone had said it was Ativan, but according to Isaac they said morphine. This is weird because morphine is for pain and Ativan is for seizures, and to be honest I am not really sure what they gave me. I was pretty foggy for awhile again. Isaac said I kept asking him the same questions over again:


- how long was I out?
- where are my clothes?
- Is Amanda here?
- Will you take care of Sammy?


I don't really remember asking those once, let alone multiple times. Also for some reason I kept thinking about the donut I had left on my desk... when all this started I had just sat down to write emails and eat my donut... but there it was, getting stale while I was in the hospital. ;) (I did eat it later at night!)


Apparently Amanda and Isaac had been booted out to the waiting room during the second seizure, for about 20 minutes. I don't remember that, just waking up and Isaac was holding my hand. Shortly after this I let Amanda go home. She had updated a few of my closer friends and Danielle was on her way over to support as well.


They took blood twice (the second time was to test my Keppra levels), and called the on-call neurologist (I don't know why they waited for the second seizure before calling him!). My headache was way worse after the second one so they gave me Tylenol but it didn't really help. Later I had some Ibuprofen from Dani and that helped a little but mostly I needed to go to bed.


The neuro came, asked me all the same questions I'd already been asked while someone else took notes. I told him about my med increase and he said I can increase it again (I was going to today anyway because it was a graduated increase). The neuro was FAR less concerned about my condition than I was. He seemed to think it just fine for me to go home, and I asked what to do if it happens again while I'm at home, and he said I will be fine and don't need to return to the hospital unless I think I can't ride it out on my own. He said no swimming or other bodies of water for the next while(!). Also no driving, which I knew would be the case. He said they will send report to my own neuro, but he isn't in office until Monday so for the weekend I'm on my own. He also said they would not be re-doing the CT or other tests. In other words, as soon as the blood tests were done and I got my clothes back, I could leave. Dani showed up somewhere in this time frame and was able to drive Isaac and I back to my car so that Isaac could bring me home. Dani gave me orders (in no uncertain terms) that I am to take at least today off, possibly more. I only had one meeting scheduled for today so I will reschedule that and see how things go. Isaac is staying with me today but if the day goes well I will send him home tonight too.


Also while Isaac was driving us home last night I had another one of my "regular" episodes in the car. But this one didn't progress, thankfully. One of the difficult parts of all this is that I can no longer drive (until I am at least 6 months seizure-free, so who knows how long that will be). This is going to complicate my business commute. I think it's manageable... I just need to plan better and spend a lot more time on transit. :/


So now... I don't know what happens. I will talk to my own neuro, possibly another med increase... not sure. The saga continues. :(


Hospital Selfie!

Neuro Update

I saw my neurologist at a trail race a few weeks ago (I wasn't running but had friends who were). It's kind of fun to know that he is into running. I didn't say hi to him at the time because I didn't want to interrupt him on his day off and I wasn't sure whether he would recognize me out of context. But I mentioned it today and he said to say hi next time! He also wanted to know why I wasn't running the race myself (I said cuz it was too short ;).

Anyway, my third appointment with him today. I've been on the Levetiracetam/Keppra for three months now.

What I reported:
- the mild daily activity that I was having before is virtually gone
- the clusters of strong ones are still happening, though perhaps not as strong as before (hard to say)

As I anticipated, he suggested increasing the dosage of the Levetiracetam for a few months and see what happens. I'm ok with that since I've been on a low dose and the side effects have been manageable (except I miss my wine!). I expect to be extra tired over the next few weeks as it's increasing, since that's what happened the first time. The experiment continues!

We also talked about a few other things:

- Complex vs. Simple: I asked this because he keeps saying "Complex partial seizures" and I thought it was Simple Partial seizures. He said it's Complex because there is an alteration in consciousness. So even though I am fully aware, walking, talking, etc, when it happens, there is an altered consciousness that happens (the deja vu, looking "lost", feeling like my brain is catching up to myself, etc.). Mine is mild, but it's still complex. Good to know.

- if this medication works, and the episodes stop, I will get a diagnosis and then I stay on the med for two years (generally). After two years we re-evaluate.

- I could end up being on this med long-term (maybe forever), but that is better than leaving it untreated and risking progression.

- Early treatment like this can prevent the brain from getting into the seizure pattern, which can mean better results over the long term. When he said this it reminded me of the book I'm reading right now. It's about neuroplasticity and how our brains get good at what they practice (of course!). So if you have a lot of pain, that can become chronic pain simply because your brain practices it for awhile and gets extra-sensitive and patterned into it (the author calls chronic pain "learned pain" and says that you can untrain it). Same thing could be the case with my episodes... if we suppress them now while it's early, new, and mild, hopefully my brain doesn't become patterned to the episodes and can improve itself. That was good news and I'm curious to see how it plays out.

- Cannabis oil: Of course he can't endorse it. The effects are unknown and there isn't enough research. He said as a doctor he can't endorse it, but "what you do in your own free time is up to you". I said, "so you wouldn't hold it against me if I were to try it?" And he said definitely not. I wanted to check this with him because I think some doctors would be dead set against it and I don't want to piss off my specialist. I need him to be in my corner. He did not discourage me from trying it, but we both agreed that I shouldn't change two things at once. So I will do the increased medication for a few months and see what happens. Then later I can decide if I want to try the CBD.

Side note: As I was sitting in the waiting room, I was thinking back to how stressed I was in the beginning, and today I was just so grateful to be there, to have this quality of care, for the Canadian health care system, that overall I am still healthy and this is manageable (so far). And then I went for a run. :)

Onward.

Keppra update

I've now been on the Keppra for two months.

I definitely think it's helping. Not 100%, but on the right track. Before, I was having mild daily activity punctuated by strong clusters. Now the mild daily activity is virtually gone, and the clusters have not been as intense as the previous ones.

My mood is mostly ok. Two weeks ago I had several days where I felt downright depressed; I can't even remember the last time I felt that bad, and depression is not something I normally struggle with. I don't know if it was related to the meds or not, but it passed after a few days.

I'm still tired ALL the time. I think this is more about needing a vacation than the med. I've been working non-stop for the past three years so that plus various kinds of stress makes me tired. I'm making a point to schedule in more down time, and am hoping to take some days away this summer.

The Keppra does not play nicely with wine. :( It seems like other drinks are ok, but when I drink more than one glass of wine I feel crappy and woozy. When I've googled this, it says that alcohol may increase the side-effects of the Keppra, but that's not what's happening. It's like the Keppra is increasing the effects of the alcohol. But only with wine, which is sad because that's my favourite thing to drink. Now I just have to keep my amounts low. Also, an acquaintance who is a doctor said that her migraines are worse when she drinks cheap wine, but not when she drinks high-quality wine. So I'm going to try some better wine and see if it helps (doctor's orders ;).

One more month to my next neuro appointment. My prediction is that we will be increasing the dosage since it is helping. Unless something changes between now and then (which is entirely possible given how strange and unpredictable this has been since the start!).

4/20

Last night I had a meeting with a client who has brain health issues (not the same as mine). Her condition cannot be treated by western medicine and her own doctors are now telling her to explore alternatives. As a result, she has begun researching some less-conventional therapies.

In the course of her search she came across cannabis oil and has started using it. She has only been using it for a couple of weeks and is already noticing marked improvement in her symptoms. Last night she told me about this and also that it can be helpful with seizures as well.

Like me, she is skeptical of naturopathy and is not a fan of marijuana, but she is buying the oil with a higher ratio of CBD (which has the medicinal effects) and less THC (which gives the psychoactive effects).

So today I went to look it up; lo and behold, the Epilepsy Foundation has a whole page about this:
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/other-treatment-approaches/medical-marijuana-and-epilepsy

The gist of it is that studies are currently being done and there seems to be benefit to CBD for seizures. However, not enough research has been completed yet. They are recommending that if a person's seizures are not responding to regular anticonvulsants, CBD may be a good thing to try.

Something I will be thinking about and reading more about over the next while!

In other news, I have been having some mild episode activity over the past couple of days, more like the mild days I had before starting on the Keppra. So the jury is still out on whether the med is helping. I do think it's helping to a point, but not 100%. Will see. 

The Neurologist is In

Today I went to the Brain Health Fair at the convention centre, put on by the American Academy of Neurology, which is having a conference here this week.

It was cool, largely geared toward kids but still interesting for adults. I got to hold an actual human brain in my hand (!) and the guy showed me the temporal lobe.

They also had booths where you could speak to a neurologist so I went to the epilepsy booth and talked to a neuro there. I told him I'm in the process of being diagnosed. He asked me to describe my episodes so I tried, and told him about the testing and meds I've been having. He said that it definitely sounds like temporal lobe seizures. A few things I gleaned from the conversation:

• Seizure meds often deplete folic acid stores, so it's a good idea for me to take a folic acid supplement, especially since I'm in child-bearing years (he asked if I plan to get pregnant; I said no, but he recommended the folic acid anyway, "just in case").
• It's not weird that my symptoms started so late in life; they can start at any time with no prior symptoms (I kind of knew this but wanted to double check)
• It's definitely possible that it has been caused by early childhood brain trauma. When I was a toddler I fell out of my high chair and hit my head, lost consciousness, and stopped breathing briefly. I asked if this could be the ultimate cause, and he said it definitely could be. 
• Even though my MRI did not show brain damage (per previous point), he said that many MRIs are not powerful enough to show things like what I may have had, and if I had a more powerful MRI it might show. However, he said it wouldn't change treatment so it would just be for curiosity if I were to have another MRI.
• He was happy to hear that the Keppra seems to be working already, and said that my dosage is quite low and there is room to up it a bit. He said that as long as my seizures are responding to meds, then surgery won't be an issue, but sometimes they do surgery when people aren't responding to meds.
• He said it sounds like I'm "in good hands" and on the right track. 

Even though I trust my neurologist, it was great to get some validation of what we already thought, from a third party.

I've now been on the Keppra for a little over a month, and it does seem to be helping. Not 100% yet. I did have a small cluster of strong ones last week, but this cluster was only 3 episodes over 2 days, which is an improvement over past ones. Also, I've had virtually no other activity since starting this med. Before, I was having mild activity daily plus the strong clusters. Now the daily mild activity is almost completely gone. So if that continues between now and June (when I see the neuro again), it looks like I am on the right med. Even though I did have the cluster last week, that may mean that the med needs more time or I may need a slightly higher dosage. It's looking promising though! 

Just like Dostoyevsky

It's now been 6 weeks since I last recorded an episode in my tracker.


Four weeks on the new med.


It seems to be working.


I did have one 6-week stretch before, but even then I was having super mild activity, just not enough to record.


Now I'm having basically nothing. To the point that I sometimes forget that I have this, or think, "it's stopped so maybe I don't need the meds" (yes, I know it's the meds making it stop!). Periodically I stop and think about it because it feels weird to suddenly have nothing. I was talking to a friend about that who has lived with chronic pain and she said it's the same with her... when she doesn't have pain she has to stop and think about it and it seems strange.


I'm going to give it one more monthly cycle before coming to any conclusions, because it could come back just as quickly. But so far so good... I think the new med is helping.


Which means I will probably get a diagnosis the next time I see the neuro (in June). Partial seizures, temporal lobe. He still says complex and I still say simple, but I'm going to ask him about that and why he thinks complex (Dr Google says it usually requires a loss of consciousness, or other physical symptoms, which I haven't had... but Dr Google isn't a neurologist).


For those who want more info about what this is and means, here's a good page explaining it:
http://www.epilepsy.com/learn/types-epilepsy-syndromes/temporal-lobe-epilepsy


According to that article, Dostoyevsky had temporal lobe seizures too! At least I can claim something in common with a great author. ;)

Six months

My first "episode" was 6 months ago today. Actually my first FOUR episodes happened that day, all very strong. At that time I thought it was just something strange, and I didn't realize that it was going to result in months of testing, doctors, hospitals, medications, side effects, anxiety, and stress. More than that, the possibility that I may now have a chronic illness. It feels strange to think back to that first day and all that has happened since.

Now I'm in week #3 of med #2. The new med seems to be a LOT better than the old one. The only side effect I have noticed so far is that it makes me tired, and that should improve over the next couple of weeks. I have been at full dose since Sunday.

The last episode I entered in my tracker was a month ago. That was the last cluster of "bad" ones. I will give it another month before I decide whether the meds are helping, but I think they just may be. I have had almost no activity since that cluster, and what I have had was mild.

Next appointment with the neuro is early June, and by then I will have a very good idea of whether the med is doing the trick. If it is, then he will likely give me a diagnosis of complex partial seizures.

Still lots of unknowns.

I was never one to take my health for granted; I frequently was grateful for how healthy I've always been. But wow how my perspective has changed in the sudden transition from "I've always been perfectly healthy" to "This is my life now." It's a sharp reminder to never assume, even in our 20s and 30s, even with a healthy lifestyle, that we can keep that. We're not promised that.

Onward! :)

Life is Beautiful!

When I was on the carbamazepine, I knew that it was affecting my moods. I knew it was making me sad, and I described it as having my emotional baseline lowered. But until I stopped taking it, I didn't realize how much it was affecting my moods.

I took my last dose of that on the Thursday evening that I got the rash. By the following Monday, I felt incredibly happy and positive and energetic... more than I had since starting the med. I was a bit shocked at the difference, to be honest. Suddenly life was good again.

I'm now one week into the new med, Keppra (levetiracetam). The first week was at half dose, and now I'm at 3/4 dose. Will go up to the full amount this coming weekend.

The only side effect I've noticed so far from the Keppra is that I'm often sleepy and my eyes feel tired. That's manageable, and the pharmacist said it will go away after about a month. No dizziness or drowsiness. Overall I feel pretty good.

The neuro said this med can make me irritable and grouchy, but I haven't noticed that yet (I'm relying on my friends to tell me if I become more bitchy than usual! ;).

I haven't had any episodes in the past couple of weeks but that doesn't necessarily mean anything since I have had weeks of episode-free time even without the meds. So we'll see how it goes.

Also, I picked up my CD from the hospital with my MRI and CT scans on it.

My brain!

The ones with the eyes creep me out:

The CD has over 1000 images on it, in various sets from different angles and depths. It's pretty cool and I'm passing it to a friend who does 3D printing, in hopes he can print my brain for me!

Also, the reports said:
"The brain is normal. No evidence of mesial temporal sclerosis, migrational abnormality, mass, or scar is identified. The ventricles are normal. No areas of restricted diffusion are present."

"Noncontrast CT head was performed. No intracranial mass, hemorrhage or infarction is present. The ventricles and sulci are normal for age."

 And yet there's still something wrong, which isn't showing on the scans. :/ 

Side Effect Bingo!

Carbamazepine, week 6:

After the rough week I had last week, this one started out much better. I was starting to feel myself again, emotionally, and thinking that I can tolerate this med. "Maybe I'm finally adapting," I thought.

My neuro follow-up was today at 11:45am.

Around 10am, as I was getting into the shower, I noticed that my stomach was covered in tiny red bumps. Weird. Of course my mind went instantly to Death Rash but this didn't look like that, more like a heat rash of some sort. One of the side effects that I don't think I've mentioned here is the heat sensitivity. There are days when my cheeks feel incredibly hot, and often after a run I have had a bit of a heat rash on my cheeks/temples. So I thought maybe this rash on my belly was that. It wasn't painful or itchy at the time.

I went to my appointment and told the neuro all of the side effects I've had, including the heat rash/bumps. He asked a couple of questions to make sure it wasn't the Death Rash. He also asked if the meds are helping at all. I said if anything, they are making the episodes slightly milder, but the episodes are still happening. He said since I'm tolerating it we would try giving it more time and then if the med isn't working in a few more months we'll try a different one.

Finished my work day, went home, and the bumps on my belly seemed more red and intense. I debated going to a walk-in clinic, but opted to call the nurse's line instead. I spoke with both a nurse and a pharmacist; both were really helpful and talked through lots of options. Both said to me that as long as the rash doesn't get worse, spread, start to hurt/itch, I'm ok to just monitor it for now. So I didn't go to the walk-in.

9pm, I felt an itch on my neck. I went to scratch my neck and felt bumps. Checked it out in the bathroom and sure enough, the rash had spread up to my chest, neck, shoulders, and arms, and was starting to get itchy.

I considered that "getting worse" and decided to get it checked. Walk-ins closed at 9, so I went to Emerg (second time there in one month! yay!). Sat in Emerg for over an hour while they looked at people with breaks and sprains (don't they know I'm a P1?!?!).

Finally I saw a doctor, told him what was happening, showed him the rash. I also told him about how/why I thought it was a heat rash at first, some of the other side effects, and also that I'm still having episodes. He said, "this is not the med for you."

He told me to stop taking it right away, and gave me a prescription for a different med (Keppra). He also said he will send a note to the neuro to let him know, and I will also call the neuro's office in the morning.

A part of me is greatly relieved that I don't have to take Carbamazepine anymore. I asked whether it's ok to go cold turkey since I've read about withdrawal issues, and he said it should be fine.

Haven't researched the Keppra yet... hopefully it's not as bad!

still looking for a pattern

When this first started I thought there was a hormonal pattern because the first couple of bad days seemed to coincide with ovulation. Through my reading I've learned that ovulation is when estrogen is highest, and estrogen excites the temporal lobe. Progesterone, on the other hand, calms the temporal lobe. So some women with seizures will use progesterone supplements to help calm their seizures. As well, some women find that as they enter menopause, their seizures calm because of lower estrogen.

But after the first couple, they seemed to deviate from the ovulation pattern. Also, in all my zillions of blood tests they also checked my hormones and didn't find anything unusual.

Even so, I still keep coming back to this idea of a hormonal connection. So today I decided to plot it out. Luckily I track EVERYTHING about my health these days so it's relatively easy to plot it. Please ignore my crappy graph-drawing skills.

Here I've only graphed out the "bad" days, as well as the first day it started happening, which was 10 days before the first bad day.

So they definitely are spread out, but only between days 5 and 17 of my cycle, or roughly half of my cycle. In the other half of my cycle, I have not had any bad days.

Since it has only been 5 months it's too soon to know if it will hold, but it's interesting. Or maybe it's just random. :)

well then.

I don't think the meds are helping.


If anything, they are making the episodes slightly milder. But not much. Not enough to be worthwhile.


I've been on them for a month now and I thought they were helping at first, and until a few days ago I hadn't had any "bad" days or strong episodes. But then on Sunday I had the first bad day since starting the meds. Four pretty strong episodes that day and general feeling of crappiness. They weren't as strong as previous bad day episodes, but strong enough.


That was Sunday, and on Monday I had one strong one and just now (Tuesday) I've had a very strong one. Sitting at my desk in my office: strong disorientation, deja vu, dizziness, warm tingles all over my body, followed by a headache.


Not only that, but the meds are making me sad. I cry far more often and more easily than normal. I described it elsewhere as having my emotional baseline lowered. My happy isn't as happy and my sad is more sad (and frequent).


I'm worried that if I tell the neuro that the episodes are slightly milder, he will want to increase the dosage. When that thought first occurred to me, I wanted to cry.


I see him next week and I'm going to tell him all of this and I hope there is a better solution than increasing the meds, because right now the emotional side of it is manageable but if it increases I'm not sure that it will be manageable. :/

Carbamazepine Week 4

This will probably be the last med-progress post I do unless something changes, as I seem to have adjusted to it pretty well.

I'm definitely more emotional than I was before. I'm not sure if that's the med or my current stress load. I cry more easily these days... little things make me teary right now. Med or stress or both? Hard to say.

I'm also exhausted all the time. Again, it's hard to blame the med when I have stress and am still not quite 100% from my flu (feeling much better in general, though one of my glands is still not back down to normal size). Or maybe it's just the February blahs.

Overall, not as bad as it could have been.

I have to go get my blood tested next week to make sure the med isn't adversely affecting my blood cell count, and then the following week will be back to the neuro for a follow-up.

Still no big episodes since Jan 13, but the small/mild ones are still happening. Mostly they are just like a passing feeling... so if it stays like that's it's manageable. Still disorienting sometimes. And sometimes I lose my train of thought because of it. There are days when it seems like they're coming and going all day and I keep losing my spot and have to re-orient myself mentally. So if you're talking to me and it seems like if fade out for a second, that's why. But most days are ok.

Carbamazepine Week 3

What a week!


It was my first full week on the full dose of meds. I was incredibly busy and stressed at work, pmsing, and adapting to being on the meds. On Thursday I started feeling sick, but I wasn't sure if I was actually sick or just needing some downtime. By Friday it was clear I was actually getting sick. Headache, body aches, feeling feverish, swollen glands, fatigue. I spent chunks of Friday and Saturday in bed, resting and napping but not feeling better.


It is flu and cold season and there are lots of bugs going around, but even so I rarely get the flu (last time was in 2006). Red flag.


When my neuro gave me the prescription he said, "If you get a rash, stop taking it and call me." So of course I had looked that up, along with all the other potential side effects. My med can cause a thing called Stevens-Johnson Syndrome, which I've nicknamed the Death Rash. It causes rashes and blistering all over the inside and outside of your body and can actually kill you. But what the websites told me (that the neuro didn't) was that a few days before the Death Rash appears, flu-like symptoms appear... exactly the flu-like symptoms I was experiencing.


So my thought process went like this: "I never get the flu. What are the odds I get a flu just two days after hitting full dose on these meds... what if my symptoms are pre-Death Rash symptoms, not an actual bug?"


Then I was paranoid. So on Sunday, still not feeling any better, I decided to go to the doctor. I also opted for emergency (might as well capitalize on the P1 status!). Walked in and said, "I might just have the flu, or I might be having an adverse reaction to my new medications."


Luckily they took me seriously and they did a bunch of blood tests which included my carbamazepine levels in my blood and my blood cell count, as well as things like mono and some STIs. Of course there is no direct test for flu bugs or pre-Death-Rash so the doctor had to use his best judgment. He told me that as far as he could tell, it was just a flu. But if I get a rash, "that changes everything."


Five days later... no rash, and the flu seems to be gone (though the glands in my neck are still enormous).


If the med is affecting my blood cell count, that could affect my immunity. In any case, no Death Rash.


I do think the meds are helping my "episodes". At least, I haven't had any significant ones since starting on the meds. It may be too soon to say still, but even the mild ones are milder and less frequent than before. I was having clusters of strong ones roughly monthly and now it has been a month since the last cluster. So far so good...

Carbamazepine Week 2

As of Tuesday, I'm up to the full dose (for now) of the med.

For the most part I've been feeling ok, though it seems every time I increase it I have a couple of rough days where I feel more sad/emotional than normal. It seems to level out after a few days.

It also seems to make me more tired. Last night I slept a little over 8 hours but still feel exhausted and emotional today, with headache and scratchy throat too. Maybe the meds, maybe stress, maybe hormones, maybe that cold that's going around. Or all of the above. Hard to say.

We'll see how the next week goes now that I'm on the full dose.

Mostly I just want to curl up in my jammies and watch netflix for the next couple of days, but that's not an option, so I'll keep plugging. :)

Carbamazepine week 1

I started this med last week on a quarter dose for three days, then a half dose for 5 days. Today is day 8 so I will be bumping up to 3/4 dose tomorrow.

Every day I have a moment where I self-assess. How am I feeling? Any side effects?

The only thing I've noticed so far (which may not even be related to the med) is that my regular emotions--both good and bad--seem to be amplified. The reason I say it may not be related to the med is that I'm also under a lot of stress this week, and stress can have that same effect.

Monday and Tuesday were highly emotional for me, again triggered by stress. After I went for a hard run Tuesday night, I felt a ton better. Today I feel much more myself.

So for week 1... no issues.

Oh, and I'm barring myself from alcohol for a couple of weeks while I see how my body and mind react. The reason is that the first night I started the med, I had a couple of drinks--then woke up in the middle of the night with a killer stomach cramp. Don't know if it was the med or the alcohol or both or neither, but I figure it's safer not to have any alcohol for now, at least until I see how things go.

coffee, on the other hand....

Gratitude and Frustration

After I posted my update yesterday, so many comments, messages, and phone calls came. Everyone is so supportive, and I'm so grateful for that. It's so good to know I have a support crew to depend on if I need that over the next while.

What has been frustrating me--and I wasn't able to express it until I said it out loud on the phone a few minutes ago--is that everyone thinks "all the tests came back normal" is good news. I know you all mean well, and I know it's a good thing that I don't have, say, a malignant brain tumour. But it's not good news.

"All the tests came back normal" simply means we still don't know what's wrong. I may or may not be having seizures. So we try a seizure med (which may or may not result in mood changes, suicidal ideation, blood/marrow problems, allergic reactions, etc.). The seizure med may or may not make a difference. If it does, yay(?) I have epilepsy. If it doesn't, it's back to trial and error with a different med. Maybe more testing.

Best case scenario(?) this first med works and I get diagnosed with seizures/epilepsy and potentially lose my licence. But life will go on and I will manage that.

Worst case, I continue trying meds and tests and doctors for months or years. Some people go through all of this and never find out what was wrong.

This is why I was so upset last night, and why I'm not sure how to respond to all the "this is good news" comments. To me it's not good news.

But, I'm not dying. And like I said, I am super grateful for all the support. I don't want this to come off as rude or ungrateful... I just feel the need to express why I'm not happy about "all the tests came back normal". :/

In any case, I know I will be ok and that you all will be there for me in the process. :)

Now excuse me while I go take out my frustration on a punching bag.... :)

It LOOKS ok....

So, I had my second neuro appointment today.

As I mentioned last week, my symptoms had come back strongly after being really mild for awhile. I had two strong episodes on Jan 10, and one each on Jan 12 and 13 (both of those two were during strenuous exercise, though that hasn't generally been the pattern so maybe just coincidence).

This week has been ok, though I was feeling a lot of anxiety today about the appointment. I was "hoping for the best" but wasn't really sure what that would be... none of my options seem great, except maybe the migraine option.

Anyway, all my tests came back normal.

That's both good news and bad news. It rules out major things like brain tumours, lesions, and mesial temporal sclerosis. It does not rule out seizures/epilepsy.

The long and short is that I still don't know what's wrong with me, but seizures are becoming more probable. Which is really what I've thought all along, even though I was really hoping it would be something else.

I asked about getting other tests done and he said at this point they aren't likely to show anything different. He seems to be leaning toward complex partial seizures. I still think simple partial, but he keeps saying complex (I don't have any motor responses, that I know of, and the psychic simple partial matches my deja vu experience).


So he said the next logical step is to start me on some seizure meds and see what happens. Sometimes they use the meds to diagnose. If these meds clear up my symptoms, we'll know that that's what it was. If the symptoms continue on the meds, we try something else. In any case, he's starting me on a med that is commonly used to treat partial seizures. It's called carbamazepine.

The meds can have side effects on blood/bone marrow so I have to go for blood tests in a few weeks to make sure everything is ok. They can make me tired/dizzy, but he said it shouldn't be bad because we're doing a very gradual start and gradual increase. They can also cause mood changes and/or suicidal thoughts.

I go back March 3 to see how things are going. In the meantime I just need to observe whether I think the meds are helping or not. It may take a few weeks because my symptoms go through mild phases where I might not notice anything for a bit. 

Oh, and I got to see my brain. He showed me the CT and MRI images, and explained what they're looking for on each one. My brain LOOKS healthy. Nothing obvious on the images. Again, both good news and bad. :/

I have to say I'm feeling rather upset after the appointment. I shouldn't be. I mean, it is what I expected. And if it is something I can manage with meds, it's not the end of the world. Really things could be a LOT worse. Even without meds, my symptoms are manageable. But I'm still feeling stressed/emotional about it all.

Will feel better once I've had some sleep and time to process.

there's no name for this

So, I had a pretty strong episode yesterday in the middle of kickboxing class. I don't think anyone noticed. When it happened, we were sitting on the floor stretching (between warm-up and the rest of the workout). We were sitting there and it hit me and took me a few seconds to come out of it, and just then everyone was starting to stand up. The guy who was sitting right in front of me (facing me) offered his hand to help me up, so part of me wonders if he noticed that something was happening, or if he was just being a gentleman. Either way, I let him give me the hand up. After that I felt fine.

I wish I could adequately describe what it feels like, but it's really hard to explain. It's like I'm suddenly dreaming, and the dream always feels like I've had it before. There are images, emotions, and with the strong ones I get dizzy and the dream blocks out what else is going on around me, but then it just fades off and is gone. The mild ones don't block out what's happening around me and I'm fully conscious while it's happening. The really strong ones make me dizzy and overtake me for a minute. They all just fade off in the end and I can't for the life of me remember what the dream was about (because it wasn't really a dream, obviously, just something misfiring in my brain!).

Back in the days of mystics they probably would have thought this was something spiritual. I know with other kinds of seizures or strange episodes they usually thought there was something spiritual happening, possessions and things. I can sort of understand why now, because it just completely overtakes me and I can't force myself out of it... it has to go away on its own. The strong ones can last up to a minute or two (at least, that's how it feels), but the mild ones are extremely brief, a few seconds.

anxiety

For the past several weeks my episodes have been extremely mild and light, barely there. I just have this fleeting moment of memory, but without the dizziness or intensity of before. So I've been thinking it's getting better.


Until just now... I just had a really strong one, strongest one since possibly November. And I had the feeling that it was a replica of a previous one (same location, time of day, etc.) but when I look back in my log there isn't one that matches. Maybe that's part of the deja vu... feeling like I've had this same *episode* before, even though I haven't.


This one also came with a wave of anxiety that made my body tingle. Anxiety can be part of the temporal lobe response and was a bigger factor in some of my earlier episodes, back in Sept/Oct. Today I don't know if it was part of the episode or if I'm feeling anxiety because of such a strong episode after thinking I was getting better.


I don't know. But I'm glad that my neuro appointment is coming up soon (Jan 20). And hoping he has something helpful to tell me. I thought it was going away, and now I'm upset because it's not.

boring update

I haven't updated this in a bit so I thought I should... though there is not much to tell!

I got called for a cancellation spot on my MRI, which meant that I had the MRI on December 21 instead of Jan 19. This was really good news because it means my neuro will have all the test results by the time I see him on Jan 20.

And I have to say, I am pretty impressed that within 5 weeks of meeting the neuro, my first round of testing was done. Some people have to wait months and months for these tests. I am grateful for getting in quickly, and I am extremely grateful for the Canadian health care system. In other countries I would be paying thousands for these tests... or putting them off because of the cost. Our system isn't perfect but I love that in the stress of having something wrong with me, I don't have to stress about the cost of having something wrong with me!

The MRI was an interesting experience. I was on day 2 of a cold and had a splitting headache so the noise of the MRI was hard to manage. Aside from that it was painless.

My episodes continue almost daily, but with a much lower intensity than a couple of months ago. Often it's just a twinge. I can't explain the twinge, but I feel it in both my brain and in my stomach simultaneously. Sometimes it's that feeling of trying to remember a memory or feeling and being unable to grasp it. I haven't had any of the major episodes with dizziness/nausea since November. I take that as an improvement.

Now I'm just waiting for my Jan 20 appointment and hoping there are some answers in all these tests!