Monday, June 24, 2019

My CBD EXperiment

I've written numerous blogs about our CBD experience treating Michael's seizures. We had grand success for a while and then experienced an epic fail. I don't blame CBD. Perhaps we experienced the "honeymoon period" that often occurs with pharmaceuticals as well. Who knows? (as with most things epilepsy). At any rate, since we have experienced an extended period of time with weeks, even months, between prolonged tonic seizures there will be no cannabis for Michael at this time though we certainly do not rule out using it at some future date.

As for me---well that's a different story. About 8 months ago the occasional arthritic ache and pain turned into a nearly daily occurrence and I was taking Ibuprophen 2, 3, sometimes 4 times a day. I  didn't want to continue that pattern. So---I thought, why not try CBD? I think of this as my personal cannabis experiment. And I want to share what I have learned so far.

After searching the internet, reading reviews and generally just trying to determine which suppliers seemed legitimate and trustworthy, I chose my first brand. Each month or so, I switched based on the level of effectiveness and to be perfectly honest, my curiosity. Also, once I had access to the marijuana dispensaries locally, I could peruse their shelves and question staff about the numerous products that were stocked. Please keep in mind this is my personal experience. I am not recommending any one brand nor am I suggesting that because a product didn't deliver for me, it's not a good, even excellent, product. I used tinctures. Doses varied and I generally divided the total daily dose into 2-3 administrations.  My measure of success was a dose that controlled any aches or pains and enabled me to avoid using Ibuprophen.

The first three products were purchased on-line. They were priced from $110-$130 per 30 ml. bottle. They were CBD oil tinctures with extremely low levels of THC. They all touted that their hemp was grown in the U.S. First: Elixinol- I required 30 mg/day. The tincture was citrus flavored and delivered via pumps under the tongue. The flavor was tolerable but not great. The second product was MedTerra. It was clear, tasteless and administered via dropper. I needed 33-50 mg/day. Third was Premium Jane (love the name). It was citrus flavored---delicious, administered via a marked dropper, and I needed 50 plus mg/day.  Each product lasted approximately a month.

The next product I tried was recommended by Katie's dog groomer. Yep. Anyhow...she swore it helped eliminate her brother's significant shoulder pain. It's quite pricey@ $325 per 30 ml. bottle. BUT it's unique extraction process (their sell) means that one needs only 2 drops to get 25mg of CBD. It's called Whole Flower Fluid. When I recognized I needed at least 4 drops 2-3 times per day to achieve effectiveness, I knew this was not the one for me. I was off to my local dispensary in search of a new product.

I consulted with the "bud specialist" at the dispensary and settled on a 30:1 tincture by Papa & Barkley. The specialist talked about the synergistic effect of adding more THC. That made sense to me as it's mentioned in so much literature about cannabis. This product definitely tastes of the plant. It comes with a marked dropper which is very helpful. I found it effective when taking about 60 mg of CBD/day. Because it does contain more THC than the previous products it is less costly @ $90 per bottle. I used this for at least 3 months, figuring I had found a formula I could stick with. However...

When I visited the local dispensary last Saturday, next to Papa & Barkley on the shelf was a brightly colored box (rainbow) which caught my eye. The product, high CBD full-spectrum tincture by Chemistry, also caught my attention because the strain of the plant, AC/DC, was on the label AND unlike every other product the mg/ml was broken down: 7.6 mg CBD, 4.3mg CBDa, .62mg THC, .52mg CBC, .12mg THCa. No math required.  The price was definitely right: $60/30ml. How could I not try? So far, so good @ 1 ml/day. It's administered via marked dropper and tastes plant-like as well, though not as pronounced as Papa & Barkley. I'm anxious to see what happens with this one in the next month. Even if I have to increase the dose somewhat, it seems to be the most cost-effective to achieve the desired results. I'll let you know.

It appears that CBD products with more THC and other cannabinoids work better for me. I have noticed that I am somewhat calmer (it's all relative right ?), sleep better and have much more focus (sometimes laser-like) on most of the oils and in particular, the last two. I haven't used Ibuprophen since I started my experiment. I feel good. Really, really good. Straight from the box of my current tincture: " smooth out life's edges and bring a touch of equanimity to the day."

I'm smoothin' out the edges. What about you?


Friday, March 8, 2019

Heart in Throat Disease

 That's it. That's what I have. My heart is in my throat. That's how I feel. Not all the time. Just the times I'm filled with fear, terror even, that a couple of breakthrough seizures will send us spiraling toward the abyss that is a prolonged, unstoppable seizure. I have it now-the heart in throat thing. Michael's had 4 breakthrough seizures in the last two days. They were brief---seconds only. But two knocked him off his feet.

I know what's causing them. The seizures. He's extremely stressed about a school project due Monday. The stress is causing him to mis-read/understand directions, argue when we attempt to explain or god-forbid assist and prolong the process by hours!

I finally contacted the neuro this afternoon. She knows Michael well. She asked, "Does he LIKE the course?" We chuckled. She knows he's almost there (to his degree) and that suggesting dropping this next-to-last-course is NOT an option. She figures, and I wholeheartedly agree, that he's revved up his stress to such an extent that his seizure threshold is compromised.

So...we have a plan. I'm not enthusiastic about adding a med even for a short time. But I do know how quickly 2, 3, 4 seizures can become a hellacious mess and I DO appreciate how much Michael wants to get his degree.

This evening was quiet seizure-wise but everyone's mad at someone re project or seizure safety. How do we navigate caring and protecting him with supporting his course work? Answer unknown.

I have unbelievable admiration for those people who I know and love who deal with this 24/7. You have no idea. Don't waste your empathetic thoughts on me. Keep them in your thoughts. and, should you want to do a little extra, donate to epilepsy research.

Wednesday, February 20, 2019

Was it the Moon?

Last night there was a gorgeous full moon. It shone brilliant white in the sky, the shadows of the earth clearly defined.  Did it have anything to do with Michael's seizure yesterday afternoon? Probably not. In 29 years we've never experienced the moon effect so I'm inclined to believe it was pure coincidence. I will take note of the appearance of the next full moon though just in case.

Yesterday's seizure occurred when Michael fell asleep while watching TV. It was the first lengthy seizure in over five weeks. Barry was beside the couch and I was in the kitchen so we were present throughout. I felt pretty certain it would not progress to an emergency situation  BUT  I cannot deny that piece of me that was bracing for the worst, imaging the prior disastrous seizures that occurred several years ago turning our lives upside down for well over a year.

The seizure lasted a minute and a half, perhaps two. It was an intense tonic ---I'll spare the description. I know better than to think Michael can hear my pleas. Yet still---Michael, Michael. And in my mind---stop, god dammit, stop! And -it stopped. He slept peacefully for an hour afterward and upon awakening announced he didn't remember laying down for a nap. We told him he'd had a seizure. He said he felt a little groggy but his recovery was quick enough that he enjoyed dinner, cleared the table and did the dishes as he usually does.

Anyone who reads this blog or knows us, is aware that we are very grateful that seizures haven't ALWAYS turned our lives upside down as they do to so many other families. We have had many merciful days, months and years without the menacing and dangerous tonic seizures that knock people off their feet and into whatever surface is surrounding them. Nevertheless, the epilepsy monster still visits us daily in the form of frequent, mostly brief seizures that occur during asleep--- the pesky nocturnal seizures that medical science has yet to be able to control. Those pesky seizures that with other factors place Michael in a category more likely to experience sudden death from epilepsy. SUDEP. I left out the word unexpected as we certainly are aware it is something that can occur and we live with that dread. But...we live. And most days we live life to its absolute fullest and don't think of the unthinkable as we've taken all the precautions available that Michael will agree to.

I'm thinking about the unthinkable today not because Michael had a seizure. I have a friend who's been incredibly upset this week because her friend's adult son died because of a seizure that couldn't be stopped. It has shaken my friend. I don't think she was aware of the significant risk of epilepsy. Now, sadly, she does.

We need to do better to prevent this tragic outcome. We need to do better.

Tuesday, February 12, 2019

Legally Speaking

I'm legal again. Legal to drive, that is. Barry was doing some tax work over the week-end and needed my license to complete a form. He handed it back saying simply, "it's expired".  Yikes! I didn't recall receiving a notice about renewing. I immediately went to the DMV CA website and learned that the license renewal section would be down until noon this past Monday. My mother mentioned something about a grace period, so I continued to drive through the week-end and Monday. She's my mother---I just believed what she said. No matter she resides in another state! Anyhow, when I visited the DMV website once it was up and running, I learned I wasn't eligible for an on-line renewal. Was it because  I was two plus weeks beyond the renewal date? IF I DID receive a renewal notice where in the hell did SOMEONE put it? I looked in the one place on the desk in the kitchen where I sometimes put documents until I can complete them when I have time. And there it was. Post-marked October 2018. Clearly, I was the culprit. Mea culpa.The notice was pretty clear: "RENEW ON OR BEFORE YOUR LICENSE EXPIRATION DATE. Your last two renewals have been by mail. This notice requires you to now renew at a DMV office". Ugh!

Now---about that grace period. California doesn't have one. Driving with an expired license in CA is illegal. One article I read called it a "wobbler" offense. It COULD be a misdemeanor with a fine of $1000 and up to 6 months in jail, OR it could be an infraction that could cost $250. ALL articles agreed on one thing. Do not drive with an expired license in CA. Ugh! I needed to take care of this ASAP.

I could not make an appointment at the DMV that would satisfy the ASAP requirement. So I showed up at the local DMV about 5 minutes after it opened today. Already, the line was spilling past the entrance into a hallway. After being directed to the appropriate line I stood with all the other license renewees who could choose to renew their regular "federal non-compliant" license OR obtain the REAL ID which will enable one to board a plane in the U.S. as of October 1, 2020. My renewal notice had prepared me for the REAL ID option so I had the required documents with me. (I thought). I submitted my SS#, a bank statement and my birth certificate to an officious, unfriendly young woman. "Are you married?", says she. Yes. " Do you have a marriage certificate to explain the name change?" Seriously??????  "You can just renew your license". Yeah. I'll be getting one that says "Federal Limits Apply". So...I'll be legal on the roads but no air travel for me after 10/2020 unless I visit my delightful DMV again.

I had intended to write this blog while waiting but turns out it's a little difficult to focus, type or even sit in the delightful DMV. I made it through the on-line application process on computer row. Then a kind and smiling young guy (really) assigned me my number, G066. Only 65 ahead of me. I took in the mass of humanity around me. Most were settled in plastic chairs surrounding 30-something work stations. Few customers spoke or even looked at one another. Few workers spoke to customers save the required questions. After two hours my number was called. I reported to Station 29 and was pleased to interact with an efficient, kind woman who treated me like, well...a customer! Same with the woman who took what I am pretty certain is an unflattering mug shot. Once my photo and fingerprints and signature were obtained I returned to Station 29 where I signed my temporary license. Success!

Some thoughts about the DMV. It's far better than being in a hospital. It beats worrying about the next seizure. It's a good place to practice patience and exchanging pleasantries. No one judged me for my stupidity and carelessness. I got my license. I'm legal. Thank you DMV. Ugh!

Monday, November 26, 2018

Half a Year

I haven't posted here in quite a while and generally that's a good sign. I was up quite early this morning with two airport departures and the 6:30 AM arrival of the painters of our home's exterior. I decided I would write something today and that I should note how long it has been since Michael's last lengthy early morning tonic seizure. I referred to our archaic method of documentation- a simple hand-held size yearly calendar. I turned back pages, many pages and counted the weeks--- 27 plus! Later this morning when I informed him, Barry said, "half a year".

I made coffee, found some room to change in where there wasn't danger of a worker sanding or prepping a window, and found the quietest room to make a call and try to straighten out a gift card mishap. I was leaving a message with the restaurant's General Manager when Katie burst into our bedroom. I was so unaccustomed to her "get help" behavior that my immediate thought was that she needed to be taken out. Then it dawned on me-duh- that she indeed may be alerting me. She and I went to Michael's room where observation of  his breathing and facial motions led to only one conclusion. He had experienced a tonic seizure of unknown length and was in a post-ictal state. He was easily roused and even able to take his morning meds within ten minutes. He slept rather peacefully for the next two hours. And so it goes, this life with seizures that is nearing its 29th year.

I am giddy grateful for the absence of those damned seizures for 27 weeks. It's the longest streak we've had in at least a decade, including that glorious period when we tried Jayden's Juice (THCA) and then Charlotte's Web (CBD) until suddenly, inexplicably, everything spiraled out of control for fifteen months. I am BEYOND grateful that the seemingly endless cycle of emergency room visits and hospitalizations is over and hopefully will never, ever rear it's beastly head again. But----this is intractable epilepsy we're talking about here. And never know. You just never know. 

To my readers who are not my epilepsy peeps: In this month promoting epilepsy awareness---just know it is a condition that ranges from controlled to catastrophic. That 30 plus % of those with epilepsy have seizures that are not controlled by medications, hence the term intractable. That it can be devastating to the person who has it and the family members who care for them. That it can be deadly. Let that sink in---it is responsible for 50,000 deaths a year. That better treatments with fewer side effects are desperately needed. I ask you please---don't let my gratefulness, hopefulness or sometimes, even optimism, fool you. Epilepsy sucks big time and increasing awareness is just a small part of what needs to happen.

Meantime...we begin a new streak.

Wednesday, July 18, 2018

Listen In

Last week I listened to the Podcast "Who Lives Like This".  Elizabeth Aquino and Jason Lehmbeck  interviewed special guest Paige Figi. Among a myriad of other things, Paige is the mother of Charlotte (of Charlotte's Web fame). There is much that has been written and televised about Charlotte's story but little about Paige's journey as a caregiver.

Let me just say Paige and I appear to have little in common except for the critical fact we are caregivers to children with intractable epilepsy; Charlotte, age 11, with Dravet, and my Michael, now 33, with what is described by the professionals as "LGS-like" epilepsy.

I was struck by Paige's zest for life and adventure and her commitment to doing what makes her happy so that she is there in every way for her children and all the other caregivers and children she works so zealously for. I encourage you to listen to the interview.

We've been dealing with Michael's epilepsy for over 28 years. We don't have the constant 24/7 scenarios of so many other caregivers because there have been months, even years, when Michael's daytime tonic or other potentially catastrophic seizures were not an issue. That reminds me of Elizabeth's words to her son Oliver, " And some have it better...". However, even during those times of respite there was anxiety regarding the always present uncontrolled nighttime seizures, the pain of observing how the anti-seizure drugs while effective with seizure control were dulling the mind, the experience of other effects of the drugs including behavior issues, lack of concentration, weight gain, weight loss, word finding difficulties, sleep issues, learning difficulties and so on and on and on...

Dealing with a chronic, sometimes, debilitating condition is so much more than dealing with the medical system. That would be enough for sure. But when one adds school system issues, haggling with insurance companies, bullying and isolation, stigma and discrimination---well---it's a lot. If you've been there, you get it. If not, there's a pretty good chance you don't. But, if you listen to the podcast referenced above, you might.

During our most recent battle with the epilepsy beast, I tap danced whenever I could. Yes. Tap danced---FitTAP to be specific. Those hours (sometimes 5 or 6 a week) listening to show tunes, rock, oldies, and Bruno and other contemporary artists while concentrating on  flaps, shuffles, balls, digs and riffs---well---those hours sustained me.

Caregiving can be exhausting and draining. Find that thing that works for you. Whether it be an activity or a place. Find it. Make time for it. Refresh and renew your spirit.

And one more thing. If you're a caregiver, please tune in to Elizabeth and Jason's podcast You'll be inspired and moved to tears as well as laughter--- and you may learn something that will help you to sustain and renew. Promise.

Tuesday, May 15, 2018

Hopeful Still

This morning Michael had a seizure while asleep-one of the tonics that lasts a couple of minutes. I was alerted by some loud thumping which turned out to be one of his arms smashing the wall next to his bed. Had I not heard that, I'm pretty confident Katie would have alerted me as she was almost to my bedroom as I made my way toward Mike's room. It isn't pretty watching a seizure---hoping it ends soon-swiping the magnet over the VNS which seems pretty useless but nonetheless is part of the routine. Also part of the routine is sitting beside him in bed----waiting for the stiffening motions to subside-then waiting for the heart rate and breathing to decrease to some degree of normalcy---waiting till he can groggily respond to his name. Satisfied with opened eyes that briefly meet my own and a grunt that indicates he hears me, I leave him with Katie beside him, hoping he can now sleep peacefully.

Half an hour later I return to the room with morning meds in hand. Michael wakes to the sound of his name. I ask him how he feels. "Fine". He takes his meds, climbs out of bed for a brief trip to the bathroom. I let him know he's had a seizure. His general grogginess or maybe a headache would have alerted him to that fact eventually. I marvel at how he is amazingly functional just 30 minutes after  misfiring neurons took possession of his brain. Amazing. He truly is amazing.

We have settled into this new pattern which actually was the seizure pattern prior to the hellish 15 months when monthly early AM seizures during sleep stopped and were replaced with  tonic seizures occurring multiple times throughout the day. Blessedly, that pattern stopped in February of last year and now it appears the old is new---1-2 lengthy AM seizures a month. It sure beats the traumatic falls, sutures, hospitalizations and emergency calls made necessary when the seizures simply wouldn't cease no matter the emergency drug.'s better than when every day was hell on earth. But it's not acceptable.

Not Another Moment Lost To Seizures... I believe that's the motto of the Epilepsy Foundation of America. I would add Or The Drugs Used To Treat Them. All of this---this morning- and the past twenty-eight years lead to my current rant. Why the hell can't some brilliant neuroscientist(s) figure out why my son's brain and those of so many others are besieged by neurons gone awry? Why can't someone figure out why one medication or a cocktail of anti-seizure meds are ineffective in controlling 30 % of those afflicted, and I do mean afflicted, with epilepsy?  Why?

I have hoped for twenty-eight years that the mystery of one of the many diseases/conditions that originate in the brain would be solved and that such a breakthrough might positively impact some other neurological condition. I have hoped...and hoped...and hoped. And I will continue to do so of course. I will continue to hope that in Michael's lifetime there is a treatment that does more good than harm, or better yet, a cure. Epilepsy is complicated for sure and in many instances, catastrophic. It takes away moments and hours and weeks, months and years. It takes away lives. But it can't take away spirit and resolve or hope.

It can't take away my hope.