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. ;)