Yay Coffee, Yay Sleep!

Wow, what a week!

A month ago, when I met my new neurologist, he told me that he would be putting in requisitions for a new MRI and a sleep-deprived EEG. But there are wait-lists for both, so I was not expecting either one to happen any time soon.

Monday, I got the call for the sleep-deprived EEG. Already. She asked if I could come in Thursday. Yes, but... so soon?? Suddenly I didn't feel ready. She gave me all the instructions: St Pauls Hospital, Thursday morning. Allowed 4 hours of sleep. Hair must be completely dry. Take meds as normal. No caffeine after 3pm Wednesday. Light breakfast. Comfortable clothing. Here's how you find us... I'm writing all this down and I feel my anxiety level rising before the phone call is even finished.

I'm not usually someone who is prone to high levels of anxiety, but that day it was through the roof. Here's why:

I've spent the last three years doing everything in my power to NOT have seizures. Also, my previous EEG came out clear. But now, I had to try to turn everything around in a three day period and shift the balance so that I would have some activity on Thursday--just enough to show something on the EEG, within that one-hour window while I was hooked up to the machine. But I did not want to shift it so much that I would end up giving myself a generalized seizure.

Adding to the anxiety was transportation. I was thinking worst case scenario. If I did happen to trigger a generalized seizure due to the sleep deprivation, etc, and I was on public transit, what was going to happen? Should I take a cab? Thank goodness for Michelle and her hubby Gary, who offered to drive me to the hospital--that took a giant load off my mind!

So, how to shift the balance?

Since I was tapering off of the Keppra anyway and nearly finished with it, I stopped taking it immediately. I was down to 500mg and figured that bit of withdrawal might give a response. Sure enough, I started feeling a response over Tuesday and Wednesday (the anxiety may have contributed as well). I also stopped my Progesterone cream for those few days. Brainstormed a few other things like THC and antibiotics, but those were less practical so I didn't do them. Ultimately, I had to face the fact that I could not control the result no matter how badly I wanted to.

Wednesday night came and my plan was to sleep 1:30 to 5:30, but my fear was that I wouldn't sleep at all since I often don't if I'm anxious about something. Luckily I did sort of sleep those four hours, though I did wake up three times in that timeframe. Up, walked the dog, ready to go by the time Michelle and Gary arrived. In the car, Michelle gave me a good luck coin from Japan. :) Arrived at the hospital early enough to spend some time fretting about the test and wishing I could have some coffee. Checked in, met my EEG technician, who was very friendly and talkative. She asked me a bunch of questions about my meds, history, etc. Then she started raving about my new neurologist. Apparently he is one of the best. She said they all love him and he is very involved and compassionate. She said that he will be down at the hospital himself by tomorrow, looking at the results in person, and that most doctors don't do that (!). That was really encouraging and good to hear.

Then she hooked me up. So for those who aren't familiar with the process, they stick a couple dozen electrodes all over your head (also one on your left cheek for your eye and one on your chest for your heart). The glue they use is very sticky and nasty so that you have to wash your hair after. The electrodes pick up the electrical signals from your brain and a few are picking up muscle activity. Feeds it all to a computer. So from her computer she could see when I opened and closed my eyes, when I twitched a facial muscle, or when my ears moved, etc. It's wild. But she could also see the electrical activity in my brain, which of course is why we were there. Then they put you through some activities to try to encourage seizure activity. So the first thing she had me do was heavy breathing for 3 minutes, like hyperventilation (those of you following on facebook may have seen the comments about sometimes getting partials when I'm running). Then after that she had me relax and actually left me alone with a white noise machine for awhile in the hopes that I would doze off. This is because some people have seizures when they're asleep, or just on the verge of falling asleep (I don't tend to, but many do). Then after that, she flashed a series of bright lights in my eyes with varying patterns and speeds. Many people with epilepsy are light sensitive, apparently because the optical nerve is the only nerve that runs through the entire brain (or so my previous EEG technician told me).

Through all of this, I felt NO activity, no partials, nothing. When she was done and was taking off the electrodes, I was discouraged. I told her that I hadn't felt anything.

Then she said the magic words: No worries. We got lots.

Wait, what? You did?

She had told me beforehand that they could catch activity even if I didn't feel anything, but I wasn't really sure how much. But yep, she said that she had all sorts of "big puppies" she called them, "epileptic discharges, clear as day". She offered to show me what it looked like on the computer. She showed me the normal waves, just little squiggly waves, and then she scrolled over to one of the "big puppies", and there it was... big, jagged, pointy, mountainous line that then returned to the little squiggly lines. She explained to me how she could see from that one spot--which lasted just a fraction of a second--where in my brain my seizures are originating (called the focal point), and where in the brain they're spreading. She said it's like throwing a pebble in a pond. You have the spot the pebble lands, and then the ripples go out from there. The focal point is where the pebble lands, and she can tell that from the lines on the computer where all the ripples are(!). She moved on to another one and it showed the same thing. So my discharges are happening in the same place. Some people have multiple focal points but from a cursory glance it looks like I have just one.

She gave me a little diagram and showed me where my focal point is, where the red star is:

That is the front of my right temporal lobe. We've always known it was temporal lobe from my symptoms, and I've always thought it was my right lobe, but this confirms it.

Having a single focal point is good for a specific reason (and here is where she told me something she is not supposed to tell me, so pretend she didn't tell me this... I'm just making this part up on my own... ;). There's a possibility that it's being caused by a specific thing, as in scar tissue, and if that's the case there's a possibility that it could be removed through surgery. This is still a long shot and would need to be confirmed by further testing but it's the first time that the idea of being a surgery candidate has entered my mind--primarily because my first MRI showed nothing.

Some of you might think that the idea of opening up my head and removing a piece of my brain is not good news. But it is. Success rates with this kind of surgery are good, and the people with epilepsy who I've talked to who have had it are really happy with their results. In many cases it stops the seizures altogether and some people are med-free afterwards.

I'm not saying this is the road I'll go down. But an MRI has already been ordered for me on a stronger machine than my first one. If it were to show scarring in the same spot as my focal point, there's a chance I could be a candidate for surgery, and if my neuro were to recommend it I would consider it.

If not, then I continue on the same path, and we are at least better informed now.

In any case, this is all good news! I am happy with today's results. The sleep deprivation was worthwhile, and I was really glad to come home and sleep and drink coffee! :)

HUUUUGEEEE thank you to everyone who helped me this week with your moral support. Those of you who offered to be available in case of emergency, those who kept me company late at night, everyone who checked in on me, offered support on facebook and in texts, offered rides, and everything else. It means a lot, and I love you all. I'm going to kick back for the rest of the day. :)

New Neurologist, New Tests, New Medication

Well I met my new neurologist today, finally!
And I already like him better than my old one.
First, instead of staring at a computer screen for the entire appointment like most doctors do (including my old neuro), he asked me to tell him my story, and he faced me and took notes and asked a lot of questions about my experience. This is completely different from my old neuro. Dr K asked more questions in this one appointment than my old neuro did in three years.

I told him that I want off of the Keppra because it makes me exhausted and depressed, but that I'm happy with the Topamax. He said no problem. He said we will try one called Vimpat. It's a relatively new one on the market but does not have the mood side effects like the other ones I've been on in the past, and I also shouldn't have the big physical reactions as well. He said most likely I will just get some dizziness in the beginning but that will go away. The other big thing with this med is that it's expensive but he's going to put in the paperwork to get it covered under Fair Pharmacare for me since I qualify for that, having already tried four other meds and failed. So I can't start it right away, until that is cleared (it will be a few days to get that processed, apparently).

He is also going to send me for more testing. He wants me to do a sleep-deprived EEG. My previous EEG was just the short, regular one. This one will be sleep-deprived (meaning I have to stay up all night the night before). He's also going to send me for another MRI, but with a more powerful machine than the one I had before at the Lionsgate Hospital; this one can pick up stuff that the other one might have missed. So if there are anomalies or scar tissue or whatever in my brain that was too small for the other MRI, this one could catch it. I'll be on a wait list for those tests so they may be a few months.

Now for the bad news. He told me that every time I change my meds, I have to stop driving for three months. I didn't believe this because no other doctor has ever told me this, and I've had several different doctors change my meds (not just my old neuro, but hospital neurologists as well--none of them ever told me to stop driving each time!). He said it's the law, and actually showed me the page on the BC provincial website. So why is this the first time I've heard this??

Of course that's not what I want to hear... but I want off the Keppra more than I want/need to drive, so I'll go with it. Also I'm not working right now so it's not the end of the world. I can go back to transit/foot for awhile.

In any case, I'm not starting the new med until the Fair Pharmacare thing gets processed, so in the meantime I'll stock up on groceries and any other running around I need to do. :P

Three Years: I Am Here

Today is the 3 year anniversary of my first partial seizures.

I've decided that from here on, I'm making the anniversary a self-care day. So today I took myself out for lunch, bought a new book, had two naps, and hung out with the puppy. :)

Yesterday was momentous because I ran a 25km trail race, which was my longest distance in three years and represented a bit of a turning point. I feel like the hardest part is done (hoping, praying, knocking on wood...). The past three years have been hell, but I think the worst is over. I nearly cried three times throughout the race because of how much it meant to me, and I was super slow and it was really tough, but I was happy just to be able to do it after all that my body has been through and how hard it has been to get back here.

Now instead of just surviving, I can start moving forward again.

• I'll be meeting my new neurologist on October 22 (finally!). 
• I've reduced my Keppra dosage a tiny amount (without doctor's permission--just on my own) because it's the one that makes me feel crappy all the time and I'll be asking for a new med when I meet the new neuro anyway; I'm already feeling better even with a tiny reduction.
• I had a dietitian look at my food logs for a few weeks and she gave me some suggestions to implement in my diet;  it's too much to change all at once but gives me some things to work on.
• I'm still looking for a new job... that's the priority right now. 
• Also planning more races for 2019 :)

In the immortal words of P!nk (this is the song that was in my head for the whole race yesterday):

May the light be upon me
May I feel in my bones that I am enough
I can make anywhere home
My fingers are clenched, my stomach in knots
My heart it is racing, but afraid I am not
Afraid I am not    
I am here, I am here
I've already seen the bottom, so there's nothing to fear
I know that I'll be ready when the devil is near
I am here, I am here

summer off...

Two months since my last update, and my summer off has been lazy, sleepy, slow...

The purpose of taking the summer off was to decompress and de-stress. To focus on taking care of myself and my health.

The first few weeks were downright weird. I didn't know what to do with myself. It's very strange going from the constant overdrive of self-employed go-go-go-go non-stop working seven days per week to a sudden. stop.

Just nothing. I had nothing to do. Nowhere to be. No schedule. No obligations. I kept feeling like I should be somewhere, like I should be doing something. And the sudden mental shift. For five years every spare minute had been focused on "should be working on my business" and now suddenly that's not there anymore, and the world is just... quiet. I kept looking for a new project to start, or a new business, or a new....? It took me a few weeks to just relax.

And then I over-relaxed. Or something. Napping, reading, hiking, walking, running. Learning how to sail. That's all good stuff, but I was finding in July that I was spending too much time alone, and getting very lonely and sad. Part of that was my medication (it comes in clusters, along with my partials). Part of it was that I was spending too much time in my house by myself, and on facebook.

I find that now that I can nap every day, I do. There was one day last week where I took three naps in one day. That's how tired I am. That's what my medications do to me. Even though I'm not working, not doing anything except reading and napping, I'm exhausted all the time.

Sometime in the last few weeks I unconsciously made a shift. Suddenly I started thinking about hiring a registered dietitian and a physical trainer, about joining a gym and starting a training program. I didn't realize until yesterday that this is a shift from mental recovery to physical recovery. This is a good thing. It means that I'm ready to start moving forward.

So I'm starting consultations with an RD to see if there's anything I can do in my diet to offset the effects of my medications, to help me feel better. And I've joined the local gym. Maybe I will hire a trainer (probably not until I have an income again).

And I've started looking for a new job.  Can't just sit around forever. :)

Oh, I'm also still waiting for the referral to a new neurologist. But that takes months... no word yet.

"are you a long distance runner?"

Recently, as I was getting ready to go for a run, someone I had only recently met asked if I was a long distance runner. Innocent question, but for me it was questioning my identity. I stopped for a second--how do I answer this? Is it a yes? No? It's been three years since I did any long distances. "Once an ultra runner, always an ultra runner...?" Maybe? Do I mention why I'm not doing long distances these days? Why do I feel the need to justify myself? So I just said, "I used to be," and left it at that. But that answer left me sad and dissatisfied. Am I (still) a long distance runner?

I keep telling myself I will get back to it, and I keep finding myself unable to do it. Every run is a struggle still, a battle between my low energy level, lack of fitness, lack of time, too much stress, etc.

Then asking myself: am I just making excuses? How much is legitimately because of my illness, meds and the situation, and how much do I just need to push through the hard part and make it happen?

And deep inside the ultra runner's heart is that pulse: just keep going. You'll get there.


Grieving Mindfully
A few weeks ago when I was really struggling I picked up a book called "Grieving Mindfully", by Sameet M. Kumar. I feel as though I have lost so much since this illness started. Running isn't just a hobby. It's my primary source of health, fun, stress-relief, and social activity. My running friends have always been my primary community, and without that I have felt isolated and left out; I see their photos and activities on facebook and I'm not with them and I feel alone (and sometimes even resentful). They're off doing what I wish I was doing, and I want to be doing it with them. And now the illness has taken away my business too, which I have loved and nurtured for the past five years (more about that in a minute). What's left, and where do I go from here? So I picked up this book because it was the only one in the store that talked about grief more broadly than just losing a loved one--it includes other kinds of grief and loss too--and because I started crying in the bookstore as I was reading the introduction. Regarding the "who am I?" question, I found this piece to be particularly potent:

We grieve whenever an anchor in our understanding of our identity is lost. Picture your identity as a necklace of precious stones that comes undone and needs to be restrung. If some stones are lost, new ones must be added to replace the old ones. Grief can be understood as the process of picking up the pieces of your identity (the stones) without the help of someone you had assumed would always be there, or without a relationship that was a crucial part of your life (the string). Grief is the process of finding out who you are in a world that is barely recognizable because of the tremendous change that has taken place. You may not be able to answer the question, 'Who am I?' for a long time after your loss.

I do recommend the book for anyone who is going through any kind of grief or loss...


And some news...

Now on to my biggest news. I mentioned above that my illness is taking away my business. The truth is that my business has been struggling ever since I got sick because I have not been able to give it the time and energy that it needs, especially given the bad timing of everything--which of course I could not have changed or controlled. So after long deliberation I have come to the difficult conclusion that I need to stop struggling and stressing over it, and I need to put my health first. So I am selling my practice. This is difficult because I love what I do and I love my clients, and yes, it is a loss and I am grieving that too. But it is the right thing.

And as ever, I'm so incredibly grateful for the people in my life who have walked with me through this. Most specifically in this case, Joanne, a beautiful example of someone from my running community who knows me and my business well enough to reassure me that it is the right thing to do. But also when I said that giving up my business felt like a DNF, she told me that "It's ok to choose a DNF when there is something greater at stake; even the pros do that." Thank you Jo-Jo!

The good news is that this is going to allow me to take some much-needed TIME OFF! Actual, real time off. No work for awhile. My plan for the summer is to read, run, hike, nap, and take some sailing lessons! :) And hopefully during that time get a new neurologist...

Random Updates

Doctor Changes
As I mentioned before, I've asked for a referral to a new neurologist because my old one is crapping out on me (still waiting for that, but it will take months). Then yesterday I got a letter in the mail that my GP is moving to the Island!! So I'm losing him too. :( I hope his replacement is ok, because I love my GP. He's the good one.... :(

Antibiotics
A few weeks ago I was put on antibiotics for an injury. It's the first time I've been put on antibiotics since being on AEDs. Big mistake. It was a walk-in clinic doctor and I told her which meds I'm already on and to make sure it's compatible. She did not take any time to check, but simply said, "this one is really gentle" (my GP would have double checked...). She gave me Cephalexin. I couldn't even finish the prescription; I had a massive cluster of very intense partials while on the Cephalexin. Looked it up and sure enough, it's in a class of antibiotics called Cephalosporins, which can lower the seizure threshold. Apparently it's a relatively rare conflict, but it does happen. As soon as I stopped taking it, the partials stopped again. So now I know: antibiotics = bad. And don't trust walk-in clinic doctors. 

Stress
I've been under an enormous amount of stress lately. I don't even know where to start so I won't get into it, but it's not good for my health. I have a plan and am going to make some changes to my life to get the stress under control. In the meantime, I've been focusing on self care. I've also started seeing a counselor. This was recommended to me a long time ago, but I've only recently started, because I happened to meet one who specializes in people who have chronic illnesses. When I met her and she told me what she does, I was shocked. There are counselors who specialize in people with chronic illnesses?! I wish I'd known this in the beginning, when it all started. Interestingly, she had been wondering about how to expand her practice. I told her she should be partnering with the doctors' offices, because I wish someone would have told me in the very beginning, when everything was new and terrifying. I wish my neurologist would have handed me a counselor's card and said, "here's someone you can talk to about this."

Aside from that... just plugging on. My next neuro appointment has been pushed back to May now (they've now changed it THREE times) so nothing else to tell.

One Year!

Today marks one year since my last generalized seizure. :)

I also haven't had any partials since Christmas day, which is a record at 11 weeks (knock on wood--whenever I say that, I start having them again...).

So that means my current med combination is working, as far as that goes.

That does NOT include the Lamotrigine, which is the one that was making me sick a couple of months ago, and which I stopped taking.

I do occasionally still have mild symptoms which are difficult to describe, but which I would call "waves" of activity in my brain which pass without materializing into a partial seizure. I can feel a weirdness or a familiarity or something else indescribable and then it passes without developing.

My biggest challenge right now is the stress in my life, which of course is not good for my health in general and can be a trigger for seizures in particular. I am working on a plan to change some things up and reduce my stress load. Also working on practicing more and better self care.

Still waiting on the new neuro referral, but I expect that to take at least 4-5 months, if not longer.

One Foot in Front of the Other.

The last post I did was when I was just starting on the lamotrigine. That didn't even last two weeks. It started making me sick after only 9 days. By day 13 I stopped taking it. I was getting the flu symptoms just like with the very first med I had had (the Carbamazepine)... the same flu symptoms which are a precursor to the death rash. I called my neurologist's office to tell them what was happening and get their advice, but they did not call me back for an entire month, and in the meantime I just used my best judgment and stopped taking it. I even waited a couple of weeks and tried again, thinking that maybe if I took it slowly I would be able to make it work (that's how badly I wanted this one to work). But after only a single dose, I began getting feverish and flu-y again. So that was that.

Speaking of taking a month to call me back, it looks like I am going to have to get a new neurologist. When the receptionist did finally call me back, she simply asked whether the problem had "resolved itself". I said yes, it resolved itself because I stopped taking the medication (!). She then told me that my neuro is dramatically cutting back his hours and is only going to be available part time, which is why it took so long to call me back. Then this week they called me again to push back my April appointment by two weeks and to tell me that from now on he will only be available two days per week. So basically, he's not available. And given that I'm still trying to figure out the right meds and I need someone who is around on a regular basis to help me do that, I need a neurologist who is around. Apparently I have to get a new referral, and I am supposed to do that through my GP. Very annoying. The receptionist said that there will be a 4+ month wait list for a new neurologist... which I don't think is bad given that it takes 4+ months to see my OWN neurologist anyway! In the meantime I'm running out of all of my prescriptions and can't get in to see him... thank goodness for the pharmacists and a good GP.

In other news, I have had a few rough weeks where I have felt very discouraged and burned out. I'm now working two full time jobs just to try to get my life and business back on track. That's really difficult and I'm exhausted all the time and trying to figure out how this is going to work, and how long I can manage that. My health can't handle this for long and my anxiety levels have been extremely high.

On the plus side, I've recently met an inspiring new friend who has been to hell and back in his own life (much worse than mine) and who has been talking me through the past couple of weeks. He's been strongly encouraging me to get some counseling to help me deal with everything. Incidentally, I just recently also met a counselor who specialises in people with chronic illnesses. So I'm going to start seeing her and hopefully she can help me work through some of the stress and anxiety and burnout and figure out where to go from here.

And yesterday as I was filling up my car at the gas station, I was overcome with an enormous sense of gratitude. It wasn't so long ago that I wasn't allowed to drive and was so broke that I couldn't fill up my car anyway. Now I'm driving and have a full tank of gas. So there is much to be grateful for.

One foot in front of the other.

New Year, New Medication!

It's hard to believe that it's been two years already since I tried my first anti-seizure medication. I only lasted six weeks on that first one, during which time I cried nearly every day and landed in the ER twice. I ended up having to come off of it when I developed a rash. It wasn't the Death Rash, but any rash with these meds is cause for discontinuing them.

When I last saw my neuro a few months ago we had talked about reducing my Keppra because it's the one that makes me depressed. However, I'm still having some partials (0-5/month) so before we can reduce it we have to increase something else. So as of today we're trying something new: Lamotrigine.

But this is another one that can cause the Death Rash, so I have to start it very gradually. It will take 8 weeks to get up to therapeutic dose. In the meantime I will stay on all three meds (!) and then as long as I don't develop a rash or any other major issues, I can start to decrease the Keppra until it's gone.

The ultimate goal, he said today, is to eventually only be on one med. Though I personally would be ok with staying on two as long as they're working and not making me miserable.

I asked him today whether it's reasonable to aim for zero partials altogether, or whether I will always have a few here and there. He said it's reasonable to aim for zero, so that's good news.

I also mentioned that I had been thinking back to some of the thoughts, experiences, and things that were happening before the meds were working... some of the more interesting experiences and weird things that were going on in my brain. I kind of miss them, only because they were rather fascinating (not that I want them back). Of course I don't want to go back to having seizures (and he said good, because the seizures aren't good for me!) but at the same time some of the things that were popping up--like the early childhood memories--were pretty interesting, and have stopped now since the meds are working. But that is the trade-off, I suppose.

Wish me luck with the new med--no rashes and no bad side effects! He said it is "well tolerated", but he says that about all of the ones that we try.