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.

Random Thoughts

Doing tons of research of efficacy of CBD for seizure/anxiety management, meeting people in the community, reading blogs, articles, research papers...

Not terribly concerned about what the general public thinks is right or wrong, but rather concerned about doctor response, and most concerned about finances.

So much to consider. Just wanting to do what is best for R, and give her the best future possible, all while not going broke, or getting arrested trying to take meds over state lines.

Why is this so hard?