General Update

It's been 7 weeks since my med change, though it took a whole month to slowly increase the one and decrease the other (I ended up doing it much more gradually than the VGH neuro originally told me to, because of how loopy the Topiramate made me!) so I have only been on the current regular dosages for a couple of weeks.

Overall, I'm feeling about a million times better than I was a couple of months ago. Mentally and emotionally I'm feeling a lot better. I'm not depressed and moody anymore, and I have a lot more energy. I don't feel sick and sluggish all the time, though I do still feel tired sometimes and still need naps on many days. There are days when I hit mid-afternoon and get woozy and need to lay down for a bit, but overall I'm much improved. I haven't had any partials since March 14 (though a few weeks after that I had some extremely mild activity.... it was so mild that I did not count it, but just barely there... I can't even describe it and two years ago I would not have even noticed it).

My hands and feet are still tingly, but not nearly as badly as in the beginning, and improving. I still seem to be losing a bunch of hair every time I wash it, but that will hopefully improve. Not having memory or focus issues like I was when I started this one. And still some coughing/sneezing/breathing issues but those are also easing up. So overall I think the current mix is a massive improvement over the former one.

I saw my neuro this morning for my scheduled appointment, first one since December. This is significant since I have been trying to get in since my seizure at the end of December, when I was extremely depressed and realized my meds weren't working. Between December and March I called the office multiple times and even though he had told me that if it was urgent I could call and see him sooner, whenever I called the receptionist told me I could not get in sooner (hence the visit to VGH in March instead). So I told him this today, and he was not happy to hear it. He had no idea that any of this had happened, that I had had two seizures since he saw me last, that I had been to the hospital, that I had been calling and asking for appointments. The receptionist had not passed on any messages to him or made any notes in my file. He told me that he's not ok with that and would be speaking with her about it because with those kinds of mood-altering meds he wants his patients to be able to access him, and it's up to him to decide whether to see the patients sooner, not up to the receptionist (!). He was not pleased and I was reassured that he will deal with it for the future. Thankfully I'm able and willing to articulate these things... not all patients can or will, so hopefully there will be changes made so that others won't have the same problem. Can you imagine being in crisis and being screened out by your doctor's receptionist? Not cool. So I was glad to hear him say that he will deal with it.

I also asked him about long term effects of the medication vs long term effects of the seizures, because both have been a concern to me. He said that the medications I'm on have been around for a long time and are both quite safe, much safer than uncontrolled seizures. He said that leaving the seizures untreated would be much, much worse for my brain than being on the meds, over the long run. So I am trusting him on that one.

In the meantime, working on getting some momentum back in my business since I had let it lapse for the months when I was feeling so awful that I wasn't working much; now that I'm starting to feel better I am working again and need to get back on track!

Topiramate, Week 1 Thoughts

• The worst seems to be over
• Still tingly: tingly lips, fingers, toes, feet, all the time
• Possibly losing hair (luckily I have lots)
• Change in sense of taste (this is common)
• Brain function improving; I'm not feeling so scattered and slow as I was in the first few days

I definitely will NOT be doubling the dose all at once like the doctor told me to. I will be gradually increasing it over a few weeks. Why would I double it to 200mg when the initial 100mg knocked me on my ass for a week? I basically took the entire week off and won't be doing that again when instead I can increase in 25mg increments. I felt like I was stoned and dozy for 6 days.

I'm concerned about long-term effects. I've heard and read that memory loss becomes an issue over the long term, both with this med and with others. At the same time, memory loss is an issue with ongoing seizures. Which is worse for my brain--ongoing seizures over the years, or ongoing medication over the years? How do I protect my brain from deterioration? This is something I'm going to ask my neuro the next time I see him.

Something else I'm going to ask him: why is it that although HE tells me I can get in to see him sooner if I need to, his receptionist won't let me? There is clearly a disconnect between what he is telling me and what she is telling me. This needs to be resolved because he has given me the expectation that if I need to see him urgently I can, but when I call she tells me I can't see him sooner.

Other miscellaneous thoughts:

Friday: On Friday I was feeling pretty hopeless. This is my life now. I'm going to go through this cycle over and over again... try a new med, hope it's working, think I'm ok for awhile, and then BAM the seizures come back. From talking to other people I've learned that you never really know if you're in the clear, and it can come back at any time. There is the odd person who gets it managed for good, but they seem to be in the minority. Most people struggle with it for life. So, I could be battling this for the rest of my life. Try a new med, be ok for a little while, hope that maybe this time I'll be ok for a few months instead of a few weeks, or maybe I'll luck out and be ok for a few years instead of a few months or a few weeks, and then BAM it will hit again and I'm back to 0 days seizure free. Meanwhile my body and brain are being hammered by the physical impacts of the seizures and the medications. Basically, it sucks. Like other chronic illnesses, it's not going to go away, and the best I can hope for is management. And it frustrates the hell out of me that I may lose my memory and cognitive ability because without those I will not want to live. On Friday, when I was feeling all of this, I had texted a friend for company. He couldn't see me because he was out of town but he suggested that I go for a hike because that always makes me feel better. I said, "not today. Today I would wander off a cliff and not come back." There may come a day when that is actually the case. Some reading this may think that over dramatic, but only if you don't understand me: I would rather die where my heart is happy than live for decades without my mind, or my ability to enjoy life.

My weekend job: Some reading this know that I still have a weekend job. I don't always talk about it because it's kind of lame that a financial advisor has a weekend job. There's this impression that I shouldn't need it, right? The reality is that when you're building a business you need an extra income until the business income stabilizes, and that can sometimes take years, so I have kept an extra income on the side. When this most recent seizure happened, it happened at my weekend job. In fact, that was a good place for it to happen because all the staff there are trained in emergency situations and CPR and took great care of me. And there's another factor to this that had not occurred to me until yesterday. The past year and a half has been utter chaos for me--one challenge after another, between my health and the flood and my unstable income and moving and everything else... my weekend job is actually one of the very few, very stable things in my life. It's always there, and it's like another home, no matter what else is going on for me. So even though I keep saying I'm going to leave it, I never do. Will hang on to it for awhile longer, until everything else settles down enough that I don't need that stability anymore.

Levetiracetam: Once the new med has had a couple of weeks to build up in my system, I'm supposed to reduce (not eliminate) my old med. I'm currently on 3000mg, which is the max allowed. The doctor said to reduce it to 2000mg and then evaluate with my neuro when I see him in may. So I will be doing that over the next few weeks. While part of me is really glad to be reducing this med because it's the one that makes me exhausted and depressed, and it's clearly not working anyway, I also had a moment of anxiety this morning when I was thinking about reducing it. Where did that come from? It's not working and I don't like it, so why am I anxious about reducing it?

Topiramate, Day 1

After my frustrated post and seemingly unprovoked seizure on the weekend, I decided I needed to talk to my neuro sooner than May. Called the office (again... third time since December...) and they again told me they cannot get me in any sooner, and that I'm still on the cancellation list. I said that I'm not going to make it until May, my meds are not working, and I need something now. I asked if I should go to the hospital and see a neuro there; the receptionist said yes, if I can't wait, to go to the hospital.

Given that VGH is the best hospital in town and that they have (had?) an epilepsy clinic on site, I figured if I was going to go to an ER, it may as well be that one. So I took a book and my phone charger and headed for VGH. Sat in the outer waiting room, then the inner waiting room, then was moved in to a bed with a curtain, and waited... finally a doctor came to talk to me. I told him why I was there... that my meds aren't working, I'm still having seizures, I'm still getting severe depression, and that my own neuro won't see me any sooner than May. He said that usually if you have a neurologist then the ER ones won't see you, but he agreed that it sounded like a legit case, so he'd call over. I waited some more. Finally a neurologist came to see me (a woman!). She was really nice and was the first neurologist I've met who was actually curious about my experiences with my partials and generalized seizures. She asked lots of questions about what they feel like, my triggers, my meds, etc. She ran through the regular neuro tests, checked my eyes (said I have "beautiful pupils"). She asked me more questions in that one visit than my own neuro has EVER asked me. She agreed that it was good that I came in, and said she would check with her supervisor about changing my meds. Then she disappeared for so long that I thought she had forgotten about me. I waited and waited, and finally she returned... with three other neurologists! One was clearly the boss, and the others seemed to be in training. He ran through a lot of the same questions again.

Then he started talking about adding another medication to the Levetiracetam that I'm already taking. At first he suggested Valproic Acid, which is a well-established med and I've heard of it, but it can cause weight gain. I said yes, so does the one I'm on. I asked about the one that causes weight loss. I said that I know that is a stupid reason to choose one over the other, but I've already gained 30lb since this started and since we're just doing trial and error anyway, can I try the loss one instead? He said that's not a problem at all. This one is called Topiramate, and the reason it causes weight loss is that it apparently suppresses appetite. Of course it has a whole slough of other side effects too, but all the seizure meds do so that's neither here nor there. It's a crap shoot no matter which one I take.

He told me to start it right away at a half dose for a week, then a full dose, then decrease the levetiracetam (but I'll stay on both). So I started it last night.

And today I felt like shit all day.

The best word is woozy. Buzzed. Literally buzzing... like my body is vibrating. And my brain isn't quite functioning. But that's supposed to get better over time.

If I am sitting/laying down, I feel better, but if I'm up and about I feel worse. So I postponed my afternoon client meeting and hopefully will be ok for tomorrow's meetings. Have also had two very intense partials today (and three yesterday) so clearly that part hasn't been affected yet (but it takes time for the meds to start working, apparently).

Anyway.... I'm now into the combo-meds stage of the experimentation. This is more common than you'd think. And while the Topiramate has a whack of side effects, it does also get good ratings for efficacy, so I'm hopeful it will do the trick.  Wish me luck!

Frustration.

I've just started the second cycle of progresterone cream.

When I started it a month ago, I noticed a difference almost immediately--within a few days I was feeling better... more energy, better moods, and no symptoms. No partials since end of January (the week I had 14 partials over 5 days). I thought I was good to go.

Today I was sitting on a couch watching tv, and felt as though a mild partial was coming on. I woke up an hour later. I thought I had just fallen asleep on the couch... I didn't realize I had had a seizure but the people I was with witnessed it and told me (thankfully they didn't call the ambulance! Note to friends and family... don't call the ambulance unless I'm either injured or the seizure lasts more than a few minutes).

So... now what. That was only three months between generalized seizures (the previous ones were 6 months apart). And I had NO symptoms until it happened. No warning, have been feeling fine, until today.

And now I feel fine, apart from a slight headache. Not foggy and wiped out like I did with the previous ones. I actually think it was milder than the other ones because it didn't take hours for my brain to clear this time.

So.... wtf?!

And I still can't see the neuro until May.

Revisiting the Hormone Connection

Last week was the worst week I've had in over a year.

I had 14 partials over a 5 day period, leaving me completely exhausted. I was also very depressed for most of the month of January. Worst month since starting the meds. I seem to be getting worse, not better, which says to me that the meds aren't working. In any case, they're making me miserable so something needs to change. But my neuro won't see me until May (I am on a cancellation list, but no promises...).

There is a massive amount of frustration with knowing that the meds aren't working, they're making me miserable, and there's nothing I can do until May.

So I've been reading a ton. I had a stack of epilepsy books out of the library, and the thing that comes up over and over again is the hormonal connection. I had considered it before but the pattern didn't seem to be consistent and my neuro didn't care to talk about it, so I had left it alone. But one of the books from the library had an entire chapter about hormones and hormone therapy, and now I'm revisiting this.

When a woman's seizures are connected to her cycle, it's called catamenial epilepsy. Catamenial epilepsy is most common with temporal lobe epilepsy (which is what I have). In a nutshell, estrogen excites the temporal lobe and progesterone calms it. So if you have too much estrogen, not enough progesterone, or both, the estrogen will trigger more seizures. As well, the seizures themselves can fuck up your hormone production, creating a vicious cycle of seizures and hormone imbalance.  It can also create problems with fertility, ovulation, etc. A lot of women with catamenial epilepsy will supplement their progesterone, which helps balance things back out.

Given that (I think) I'm in peri-menopause, and my seizures started during peri-menopause, there's a strong possibility that my hormones are contributing. I also have a number of the symptoms of low progesterone, though most of those could be attributed to other factors.

My hormones were tested in November 2015, just after the seizures started, and my levels were within range at that time. But of course those numbers change throughout the cycle and can definitely have changed since then, so it's not necessarily accurate.

So I went to my GP. He is much more open to talking about possibilities than my neuro tends to be. I told him my frustration and what I've been reading, and that I want to explore this connection. I told him that I'm not going to make it until May, suffering and waiting for months and unable to do anything. I cried. He responded by prescribing me a progesterone cream to try for a few months. It may or may not help, but it won't hurt me and allows me to feel like I'm trying something while I wait for the neuro.

Today I spent some time plotting out my seizure log with my period log, to see if there is a correlation.

My seizures are relatively spread out over the 4 week cycle, but there is a definite rise in weeks 2-3 (around/during ovulation). According to my reading, this would be because of the estrogen surge around ovulation. Week 3 is when estrogen is highest.

I have recorded 95 seizures during weeks 2 and 3, and 50 during weeks 1 and 4. So that's a pretty big difference, almost twice as many during mid-cycle. Also all of my generalized seizures have happened smack dab in the middle of my cycle.

I was hoping to find a pattern that is really clear-cut, but it's not entirely. That may be because there are so many competing factors (changes in my meds, going on and off the pill, stress, peri-menopause, etc.).

I'm going to keep tracking it, and I'm going to start the progesterone cream this month.

I have to do something, in any case. :(

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 ;)