Friday, October 11, 2019

Of Winds and Wishes

Can it be? Can it be that Santa Ana conditions somehow decrease Michael's seizure threshold? I have always thought (based on anecdotal experience-you know- Mom theories) that weather changes, altitude and time zone changes might be seizure triggers in Michael's case. Anyhow...this morning Michael had a seizure in his sleep. Barry wrote the time and length in the seizure journal and he also noted " Santa Ana conditions". I flipped through the notebook to check when the last seizure had occurred and next to the time and length of the seizure a month ago, Barry had noted "Santa Ana winds". Maybe. Maybe not. There are some triggers we can be pretty certain about- stress, for example- and we can take some measures to reduce it. There are other possible triggers that we have noted with respect to Michael but some are simply unavoidable. And that's how it is with epilepsy. That's how it is. For us.

This morning's recovery was swift. Michael slept for a couple of hours post-seizure and came downstairs with an overflowing laundry basket which he proceeded to throw into our frontloading washer piece by piece as he related that he often does so "like pitching a softball" to make this particular chore "more fun". All the while he was grinning from ear to ear. Vintage Michael.  So...we're good. Seizure's done, life goes on. Onto reading and studying to get through this final course to get the degree he has so coveted. Is that a stressor? Yes.  Hell yes. But we deal...we just deal with it.

So pretty much this is the rhythm of our lives. A seizure. Move on. Do the best we can to minimize triggers we're aware of and brace for the inevitable seizure that will occur again. In a day, in a week, in a month. Oh what I wouldn't  give to say in a year! But we're not there. Yet.

Epilepsy awareness month is in November. As I've said before, I'm not certain that increasing awareness results in more research funding, compassion, or better treatment options. Nevertheless, many of us persist in this awareness campaign hoping that it might make a difference. What if one kid in one school stops bullying the kid who has seizures, and instead, sits with him at lunch? What if a handful of people with plenty of discretionary spending resources are moved to donate to research that discovers the cause of SUDEP (Sudden Unexpected Death in Epilepsy) and develops measures to prevent it? What if a young neuroscientist is moved so much by learning about the devastating epilepsies that they commit their career to unraveling the mysteries of syndromes such as Dravet and developing treatments that enable children to thrive and grow into adulthood? What if, indeed!

So...we persist. For the what ifs. For the hope of the future. For Michael and for so many others.

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!