From Seizures to CBD - Part Three

Part Three: In Which Our Narrator Meditates Upon The Suffering Of Job, Weighs His Options, And Gets The Go-Ahead To Try CBD

I’m not gonna go into all the potential side-effects of Lamo (lamotrigine, if you’re inclined to be formal). You can google them, but most of ’em are similar to Keppra.
    Except for one.
       This leeetle rash.
              Rare, rare, rare side-effect (I was assured).
                    Which, if you get it, means STOP TAKING IT YESTERDAY.

Why that sudden emphasis, you may ask? Well, gentle readers, that’s cuz if you get that rash (which may also happen with Keppra, but I guess is much more common with Lamo—hence their not warning me about it quite so profusely when I was put on Not-So-Special-K), it may develop into red splotches with purple centers, and after THAT…..necrosis.

Which means that your skin will start to rot off. (I do not, repeat NOT, recommend google-imaging “lamotrigine rash” and scrolling down the page.) We’re not talking a sunburn-peel, poison-ivy rash, or even bedbugs gnawing away at you in your sleep. I mean: your skin literally dying on you, and starting to fall off.

I know, I know—I’m fixating. Just, well, it bugs me that there is an FDA-approved pill which might do this to you. And: that I was given a prescription for it as a better alternative to the drug they originally gave me.

I am, at the time of writing this blog (July 27, 2016), still on lamotrigine.

This pill is the devil I know at this point, and while I am past the stage where you might develop that silly little probly-nothing-rash, it quite frankly terrifies me to be twice-daily taking 150mg of a drug which can do things like that. And cause long-term side-effects—but I don’t intend to keep taking Lamo long enough to find out about those.

Many of the side-effects of Lamo which I [may] have had are non-confirmable—depression, anxiety, ‘unusual tiredness’. Others, I think I would’ve noticed: mouth-ulcers, dark urine, increased seizures, and whatnot.

BTW—just in case you skimmed the last paragraph—this is an anti-convulsant which may cause seizures. Which means that either A this drug is ineffective (for a certain segment of people taking it), and has a plethora of negative side-effects, or B this drug worsens the condition that it is meant to treat. And still has that plethora of nasty side-effects. Including necrosis.

In fact, the only effect which I can say with certainty Lamo has given me is psychosomatic anxiety over its host of detrimental side-effects. Especially that rash. I went to a clinic after spending a few hours in the sun, JUST TO MAKE SURE that it wasn’t possible that the pinkishness on my skin was the precursor to its peeling and/or rotting. (No worries—just building up my base-tan:)

In my third visit to the doctor (about two months post-seizure), I asked whether CBD would conflict with the Lamo. I had researched all the alternatives he’d given me, and—the appeal of Legal Weed aside—CBD seemed like the best option.

CBD’s worst potential side-effect seems to be dry-mouth. Measured against the other anticonvulsants’ laundry-lists of potentially harmful effects, taking a medication whose worst symptom could be treated with a cough-drop made nothing but sense to me.

Dr. R_______’s immediate response was, and I quote, “I have a lot of patients who smoke a LOT of weed, and they’re all fine.”

We spoke for awhile about the side-effects of four other drugs I could take instead of the Lamo, but since all their sideFX were either worse or similar, I opted to stick with the devil I know.
For now.

((Time For Another Fun Side-Effect!! While taking Lamo only ‘may cause seizures’, stopping taking it suddenly will cause, quote, ‘seizures which will not stop’.))

After that, he left for a few minutes. I stared at the painting on the wall: a bunch of cute puppies cuddled together. Something innocuous and sweet, in harmless pastels.

I lay down on the exam-table, and got back to the text-game I was working on at the time. NiTEWALK. I’d been chewing over a scenario:

Screenshot from inside the Twine-game NiTEWALK

Screenshot from inside the Twine-game NiTEWALK

Text-games are all about decisions. See, from here, you have four options (one of which is obviously bad, but potentially interesting). In weaving one of these things, the goal is to create a compelling world for the player to explore—all in words, and the possibilities which the game unreels as you explore.

There is something there, in the darkness. You can hear it breathing. Eyes desperately dilating, you scan the clearing. There....two yellowish eyes glint at you from across the rough circle of pine-needled earth. Your hyper-aware ears pick up the sound of—

Footsteps. Door-click. I opened my eyes, and sat up.

Dr. R______ was back, along with a white-coated companion (whom I shall call Dr. J_____). J______’s whole purpose there, it seemed, was to talk with me in more depth about CBD. We’d established its safety as a treatment for seizures, and that taking it wouldn’t conflict with Lamo; from here, we got into the precise legality of acquiring, using, and carrying CBD in the State of Massachusetts.

Since CBD-oil contains a negligible amount of THC, it is non-psychoactive. For that reason, it is entirely legal in the State of Mass, and can even be sold OTC.

The biggest hurdle they mentioned—and this IS something to bear in mind—is that weed (particularly in its natural state, rather than in CBD-oil) will come in unreliable quantities. Their pills have been developed so that you will be getting a consistent dosage every time; obtaining marijuana comes with the risk of inconsistent quality, or possibly unintended ingredients such as pesticides. (Marijuana, however, has never been linked to making your skin rot off. Just saying.)

Neither of these doctors were licensed to prescribe marijuana to patients, and I don’t qualify for any of the Stage 3 studies currently being conducted. So while I can take it medicinally, I cannot obtain it medically.

I want to be clear: neither of these doctors encouraged me to take CBD. They told me it wouldn’t conflict with my meds. They assured me that it was entirely legal. And—just before I left—Dr. J_____ recommended a reliable site where I can get CBD of consistent high quality*.

So, without ever directly saying so, I had the green light from my doctors.

NEXTiME: Convincing My Parents

*If you are interested in using that site, please drop me a line through Twitter. The owner has been immensely helpful to me, and I highly recommend chatting with him (as he is a knowledgeable and affable fellow) if you are investigating CBD.

Adam Singer is a writer, game-weaver, pool-shark, and talented amateur. On March 8th, 2016, he had a seizure which has been a catalyst for deep introspection and drastic change. You can find him on Twitter, @timeofposting. If you have had a similar experience, or are investigating medical CBD, he encourages you to tweet @ him.