Change Is In The Air

If there's one thing we can count on when it comes to Rachel's seizures, it's their changeability. Just when we think we've got a handle on what to expect, something new takes place. The last couple of days have highlighted that for us, but it's not all bad.

Yesterday evening, Rachel took Stewie, and went to use the restroom. She closed the door, which isn't abnormal, but since we got the new carpet, the door makes a much tighter seal, and it's harder to hear if she calls out. Also, we had the air conditioner running, and the TV on. We didn't hear anything unusual, and after a few minutes Rachel opened the door, and sort of stumbled out. She was slurry, and indicated she'd had a seizure, so we took her to her room to lie down. Fortunately, the seizure was a partial, she didn't fall, and wasn't injured in any way.

When she got up, we asked Rachel what had happened, and if she'd alerted Stewie to the seizure. She said she didn't say "help," but when the seizure started he became agitated, and went to the door, but it was shut all the way, so he couldn't open it. She didn't see if he tried to pull the alarm. We didn't hear anything at all. Usually we would hear his claws on the floor or door, or his efforts to pull the alarm on the tub. We discovered later that the alarm has become very hard to pull, so may be rusted inside, and needs to be replaced. So, no closing the door all the way until we are assured Stewie can either pull the alarm, or open the door. All in all, she was unharmed, and didn't experience any panic, or we would have heard her screaming and crying.

This evening we were sitting in the living room, and Rachel indicated that she wasn't feeling well, and then said, "Yup, I'm going down." That was an unusual presence of mind for Rachel, and the first time she's ever said anything like that. The seizure progressed as they usually do, we swiped the VNS, and comforted her until it ended, and once again there was no panic at all, and her recovery was swift. We have often said that the worst part of Rachel's condition is the anxiety that goes along with it. These last two seizures have given us a lot of hope that she may be overcoming that debilitating reaction to seizures.

We made the increase in her cannabis dosage a couple of weeks ago, and since then Rachel has been sleeping less, able to stay up most days without a nap, and generally more willing to be up and about. While all of this is wonderful, and we certainly hope that it will continue, we always remember that it could all change with the very next seizure. We are always in a state of wary readiness, and each seizure is a unique experience. 

In the meantime, we'll be doing a round-up of all the alarms, checking each one for ease of use, and continuing to work on training, and ramping up the seizure response training that Rachel has slacked off on. I've been making sure she takes her oils each day, and now I have to make sure she's doing response training at least a few times a week, no matter how much she complains. Rachel says she feels too conspicuous doing seizure simulations in public, but I remind her that's the point...that people will notice if something happens. 

We have a neuro visit next month, and we'll decide then whether to attempt a minor reduction of the benzo she's been on for about 8 years. Now that the anxiety is better controlled, we might be able to make that reduction without a major relapse. As usual, any change that's made will be low and slow. We still have a long way to go with her oils, so we'll make another small increase before any other changes, and monitor the situation.

Here's hoping that future changes are in the positive column, and not the negative. We've lived this life for 14 years, and still feel like we're learning on the job. We still make mistakes, and don't always anticipate what problems might occur. What we have going for us is a great kid who wants a better life. 

High Doesn't Have To Be Toxic

My intention is to use this forum to share our family's personal experience with epilepsy, including treatment options, tests, evaluations, reactions, and outcomes. Our choices and options may not be right for anybody else, and every person must make the best decisions they can for themselves and their kids.

All of that to lead up to this: We have a morbid sense of humor. We're irreverent, snarky, probably swear too much, and unless things are very serious, we try to make something light out of things that might be considered heavy by some.

Lately, we have been considering what we can do to improve seizure control for Rachel, and reduce her chronic anxiety. We have been dosing her cannabis oils in very small amounts, and I knew that it would be more helpful to increase those doses, so we consulted with our oil maker, who confirmed that Rachel's dose is incredibly low, and that we should probably work on titrating up. Rachel uses fully activated forms of THC and CBD oils, which means that if she hasn't acclimated to a particular dose, she can experience a "high."  We have been so conservative with her treatment that it had never happened, and I admit to being concerned about how she would handle it, in the event of an "overdose."

Well, we increased the dose marginally yesterday, with no trouble at all. This morning Rachel dosed herself, and the syringe slipped a little bit, so she got another 1/10th ml more than usual...effectively doubling the dose she was at two days ago. She had her morning nap as usual, and when she got up still looked really tired to me, with slightly puffy eyelids. She said she felt heavy and slow, but was SO relaxed, and her anxiety level (on a good day it's 4-5) was practically non-existent. She was calm, happy, and relaxed, but was having some difficulty compiling her thoughts, so she went to lay back down for a bit.

So, that's it. Rachel was "high" on cannabis for the first time. She has been stoned on prescribed sedatives to the point that she couldn't think or speak straight, walk in a straight line, or stay awake at all. She's been toxic on epilepsy medications, which made her joints ache, gave her double vision, and caused nausea to the point of vomiting. I will take this over any of that, any day of the week. This will only last a few hours, and we can easily adjust her dosage from here, and know that she is tolerating her treatment well.

Cannabis treatment is not for everyone, but unlike the majority of her other medications, an overdose is not fatal, and rather than being worried, we were giggling about how she was feeling, and how content Rachel was to just sit with the dog in her lap, and play on her phone. We are so grateful that we have had the opportunity to give cannabis a chance, and we are nowhere near ready to give up on it. I'm only sorry that we waited as long as we did before getting started.

A syringe of one of Rachel's cannabis oils. A single dose is 3/10 of ml.

***I'm going to just assume that I don't need to tell you that we really don't intend for Rachel to be high every day, or that she doesn't drive, and if she did we would be very, very careful about her cannabis use.

Purple Day Reflections

 

  

March 26th is International Purple Day for Epilepsy. To show support and solidarity for Rachel and all those affected by epilepsy worldwide, we wear purple, and share first aid and other information about seizures. As a family that lives with epilepsy and its effects on a daily basis, Purple Day is every day, and we are always taking every opportunity to advocate.

Purple Day was yesterday. The above photo is of Rachel, wearing her purple, and Stewie, wearing his nap. It's one of his best skills. Next month, on April 25th, to be exact, we will mark 14 years of seizure experience and epilepsy education, both for ourselves, and for everyone around us. 

I don't mind telling you that I hate this "anniversary." I really do. Rachel's first seizure marked the beginning of a long and painful road for all of us. We have met some amazing people, and experienced things we never would have otherwise, both positive and negative, but I have to be honest here...I would give all of that up if it meant Rachel never had to experience another seizure in her lifetime. I have every belief that each of the amazing women I've met through epilepsy support groups, who have been there for me in the worst times, would say the same thing. "I love you, girlfriend, but if it means my kid would be cured, I'd cut you out of my life." Cold? Maybe. But I'm not gonna lie.

I use these anniversaries to reflect on each year's progress, and consider what, if anything, we could be doing better. Where might we be able to reduce a medication dosage? Do we feel the doctor is being aggressive enough in his treatment? Or, too aggressive about pushing to try yet another medication or implant? 

The photo below shows Rachel's current medication regimen. On the left are her cannabis oils.L to R: High CBD, 1:1 THC to CBD, and High THC rescue oil. The pill boxes contain her morning and evening handfuls of pills, and this is after two medication reductions this year. 

 

When we see the neuro again in a few months, we're going to consult about making another small reduction in her Keppra, which is known to contribute to emotional issues. Since the last reduction, Rachel's mood has improved, she's not having as many panic attacks, and finds it easier to cope when she's feeling overwhelmed. 

So, another Purple Day has come and gone, but our Purple Life goes on.

Breathe, Baby

Life seems to have been extra busy lately, but this week, in particular, has been downright hectic.

Rachel had an appt. with her neuro on Monday, in Portland, mid-morning, which meant no nap until we'd returned home, and both of us managing the stress that comes along with the hellish traffic in that particular municipality. We're all Oregonians here, but some of us don't seem to handle driving in rain all that well, and traffic was suffering more than usual.

Tuesday we drove south to Eugene, and my rheumatologist, where I thought I had an appt. at noon. I was wrong. It's supposed to be next week, but they weren't very busy and worked me in, bless their hearts, which included getting a steroid injection in a very unhappy finger joint. So, two days of long drives and doctor visits, in the pouring rain. 

Rachel reads with elementary school kids on Weds. and Friday mornings, so Weds. was reading, we had to do a grocery run in the afternoon, and then we had a rep. for a carpet installer come out Thursday evening to measure the house for carpet and linoleum. That meant some extra clean-up had to be done beforehand. Today is Friday, so more reading, and tomorrow I'm driving south again, to help my folks set up wi-fi in their new rental. Rachel will stay home with Dad.

This evening Rachel started having a seizure, and it pretty quickly became apparent that it was going to be a bigger event than is customary for her. It started as a pretty standard complex partial, but then she stiffened totally, her eyes rolled right, and her head turned. She held her breath, and just as her lips began to turn blue, she took a shallow breath. Brett and I were both quietly urging her to "breathe, baby, just breathe." 

I ran to the fridge, and got a syringe with her high-THC sublingual rescue oil, and squeezed a small amount into her cheek. Soon Rachel was breathing a little better, and relaxed. Her oxygen level came back up, but she was shivering hard, and was really out of it for several minutes. Stewie hovered nearby, worrying, and occasionally giving her hand a lick.

Finally, Rachel fell into a more natural sleep, for about 10 minutes, waking long enough to take her evening meds, use the bathroom, get on jammies, and crawl into bed. She asked me to just sit on the edge of her bed for a few minutes, while she worked on calming herself, as her heart was still beating pretty hard, and she was having some anxiety. I was happy to do that, of course, and would have sat there all night, if she needed me, but she told me I could go, so I kissed her head, turned out the light, and came back to the living room, and the monitor, so I could listen to her breathe.

Thanksgiving

Good boy, Stewie

The photo above was taken after Rachel's second tonic-clonic seizure in a 1 1/2 hour period. She was wiped out, and so was Stewart. He worries about Rachel when she's having a seizure, and sticks close to her when she's recovering. The bed is a mess of random blankets because her usual set was in the wash, after having been vomited upon repeatedly.

This post is about Thanksgiving; both the holiday and the emotion. We are very thankful that Rachel is ours, and that her situation isn't worse. We are thankful that cannabis is helping us manage her seizures and her anxiety. We are thankful for the wonderful people that grow and produce the oils we use. They are working very hard to get it right, and they really care about Rachel and our family.

We are thankful. We are also wary. We know about the risk of SUDEP, and that the risk is higher in a person with poorly controlled seizures. We do what we can to mitigate the risks, and give thanks for every good day.

Iffy, She Says

Tucking Rachel into bed for the night, we're laughing, she's taken her bedtime dose of oil, and she's got a chewy candy in her mouth, when she suddenly goes still, then hastily swallows the candy. I immediately feel tense.

"I feel iffy, and have some quiet sounds," she says. 

I grab the VNS magnet, and ask if she'd like to be swiped. She nods, so I swipe across the implant over her left breast, and ask if I got it. She nods again, and then does some slow, deep breathing. 

This could go either way. It could pass fairly quickly, or descend into a more involved seizure. Right now it's what would be called an aura, but is actually a simple partial seizure. Rachel is still very aware, talking with me and trying to distract herself so she doesn't panic and make things worse.

The swiped VNS will run for a full minute, at an increased amperage over it's normal setting. I check the clock. It's been more than a minute.

"How are you feeling?" I ask. "Do you still have sounds?"

"Yes, but they're quieter now." 

I take a deep breath. Maybe we'll get away with this tiny seizure, just this once. It's almost too much to hope for. It would be a one in 300 or so that a seizure is this small, and there's no panic attack.

"My head feels like it's full of fluff," she says. 

Rachel's eyes are red rimmed, and the lids are puffy; a sure sign that she's pretty tired. 

"Do you think you can lie down, or will that make you feel worse?" I ask.

"I don't know, but I'll try it and see." She does lie back, and indicates that she's feeling okay.

I hover for a minute, hesitating to turn off the light and walk away, only to hover over a monitor in the living room.

"Mom, I'll call you if I feel bad again. Don't worry."

I always worry. But I turn off the lamp, touch her arm one more time, tell Rachel I love her, and leave the room. I never leave her without saying "I love you." I live in fear of SUDEP stealing her from me.

I pull my computer onto my lap and open the seizure calendar. This has been a busier month than she's had for awhile, but somehow this tiny partial seizure has given me some hope. I check the clock again, check the monitor again, enter the seizure details on the calendar, but don't close the calendar just yet. I want to be sure she falls asleep before I do that. I tell myself it's just expediency; so I don't have to go through the wait of having the program open again if she has another seizure, but the truth is that somehow I feel like leaving it open means another seizure won't happen, like a talisman against that evil.

Before epilepsy I was never superstitious, and I still halfway believed in God. Before epilepsy a lot of things were different. Before epilepsy, life wasn't so iffy.