Grandma med boxes

Not much to tell these days, which is good news. My meds seem to be working. I'm feeling a LOT better than I was a few months ago. I've been on my current med mix since March (full dosage only about 6 weeks). Since the med change I've only had one partial and I'm feeling good. My energy levels are increasing, side effects decreasing. I still have days where I feel like I have ADHD (side effect of the Topiramate). And still many days where I just need to rest but that is also partially because I've been working my tail off to get my business back on track now that I'm feeling better.

Given all of that, I think I will probably stay on this med mix for awhile, as it's working better than any of the previous ones so far. As long as it keeps the partials away and I continue to feel good, I'll stay on it. It's still a bit early to say for sure, but so far so good.

For someone who always considered herself extremely healthy, I sometimes have to laugh at the cocktail of vitamins and medications I now take, and I thought I'd share:

The green pill box is for morning, and the purple is for evening. Here's the breakdown:

Morning -
2 x 500mg Levetiracetam (the long yellow pills buried in the bottom of the box)
1 x 100mg Topiramate
1 x B6
1 x B12
Progesterone cream (only at certain times of my cycle)
Palafer CF (only twice a week)
CBD oil (the second syringe) if I remember

Evening -
2 x 500mg Levetiracetam
1 x 100mg Topiramate
1 x Magnesium
CBD if I remember

Two years ago all I took was the Magneisum. How things have changed!

In other news, I'm also three months without alcohol..... :(

Epileptosaur

This is the most difficult post to write so far. Some of you have commented on my previous posts that you appreciate how candid and honest I am about how I feel, but this one cuts deep. Last night I was relating this story to a friend and I was embarrassed even to say the words out loud. Earlier in the day I couldn't say them without crying. But first, some background:

Over the past year and a half I have been getting to know other people with temporal lobe epilepsy through a facebook group. Some of them have talked about how they have faced discrimination from peers, employers, and even family members because of their epilepsy. For some of them, their illness has been a lifelong battle. Seizures in childhood can cause learning disabilities and developmental disabilities, which of course can then lead to social difficulties and anxieties. There is often bullying involved and social isolation. Like other disabilities, people with severe epilepsy may not be able to keep jobs or finish school, and they often face discrimination.

In that way I've been very lucky, because mine started late in life, was caught and treated early, and has been mild. I never had any learning problems growing up and even though I'm still building my business, I'm established in my life. Aside from being temporarily unable to drive and having to take some down time from work, this illness hasn't interfered too dramatically with my life. I haven't really thought of it as a "disability", though technically I could.

And then on Tuesday, something happened that dramatically shifted something inside of me.

Someone who had witnessed one of my generalized seizures, months ago, was angry at me on Tuesday morning.

I won't go into details, but he was angry and feeling powerless. And (as a witness wisely observed) because he was angry at me and feeling powerless, he picked on a moment in which I had been literally powerless--the moment when I had had a seizure in front of him--and turned it against me. He started calling me names ("Epileptosaur") and saying things like "keep me out of the splash zone next time".

I think I kept my composure in the moment (did I?) but I was completely shocked. Not only because I did not expect this kind of behaviour from this person, but also because it was the first time my epilepsy has been used against me. It's the first time in my life that I have been at the receiving end of that kind of treatment. I mean, I've been insulted a million times--I've been a youth worker for years--but this was different.

And wow, that hurt like hell. I don't know how else to say it.

This is why we teach kids not to go around making fun of people for things they can't control. This is why we model empathy and kindness and patience and love.

So today:

Be kind, for everyone you meet is fighting a hard battle.
Ian MacLaren

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. :(