Hi Zara,
I have not been around the rooms for awhile. Yet, I have found great efficacy with CBD and the other non-psych-active, THCA...not to be confused with THC. This reply will be lengthy, yet it addresses some issues I'm aware of in the drug profile you described.
I have juvenile myoclonic epilepsy. Yet, before all this, my conventional drug beforehand was Depakote. It gave me full efficacy for many years until major side effects forced me to go off and onto Zonisimide. That brought back a small amount of the myoclonis that had been gone completely along with my tonic clonic.
The drug titration off of Depakote and onto Zonisimide was no picnic. I had a choice of other drugs since the Zonisimide was not working as well as expected. However, I was not feeling the love after what I endured. Perhaps much had to do with the research I was doing into GW Pharmaceutical's CBD formulation, Epidiolex. This is what Realm of Caring and all the other CBD vendors researched and modeled their platforms on. Plants with a high yielding CBD like AC/DC, grown organically or veganically are much better for seizure control. Although, CBD is not the only cannabinoid with efficacy. THCA is much cheaper and it is top notch for some. Still, your CW is a very potent and successful CBD cannabinoid.
Living in a MM state, I was doing my best back then to track down CBD rich plants. This was long before Sanjay Gupta's Weed episodes. But what I found out while doing this was more important than CBD. And, this is the point I wanted to bring to your attention. You mentioned using Clobazam, ONFI. If you use any benzodiazapine for seizure control, you risk building tolerance, dependency and greater seizure issues and a myriad of other symptoms which may develop when choosing to go off of the benzo. Many of the CBD children living in the MM states with intractable seizures are having to wean off of their benzo drugs before they can realize the true effectiveness. Klonopin (Clonazepam) and ONFI (Clobazam) are two of the common benzo's they are on. This reaction of going of of either is one that has to take its course and can take months, even years before the Central Nervous System calms back down. I know this for myself.
Back in 2011 while trying to track down a reliable source of CBD to control my myoclonic head shakes - which some higher strains were doing - I ended up going onto Klonopin after having a huge 35 minute myo episode one night. My brain was almost like gel. There was no such thing as a regular supply of CBD back then. Very rare to find a high strain in those days. At the time, I had not been doing CBD for practically 3 weeks.
The episode was so bad I could not get hardly any sleep without shaking as soon as I closed my eyes. The second night I had another episode. All I knew is that I needed something to calm my brain or another huge episode would hit and it felt surely as if it would go tonic clonic and I might not come out. I called the doctor and it resulted in a klonopin scrip. It worked great, calming all these shaking nerves. From then on I took it "As Needed". Yet, I knew something was not right as not all neurologists were on-board with prescribing k for seizures. Took it occasionally for about 1-1/2 years. It set me up for what was to become the worst experience of my life. And, I only was taking it about once a month....and then it changed to maybe every two weeks or so...then finally to every week.
Everything was starting to feel weirder and my myoclonis was getting stranger in its activity. Felt like I needed Klonopin much more frequently during stress times which I normally would not require. Slowly these changes were taking place. I was scared as I watched myself act differently and get myo attacks more frequently. Enough was enough and I went for the Hail Mary play and hurriedly rustled up a one day commitment to quit cold turkey.
This cold turkey move was the biggest mistake, and I only did so since I was not using daily. Benzos are insidious and there is more power in those tiny pills than anyone could ever imagine. But I used cannabis flowers as my rescue and hoped for the best. And, at about 9 months after, I recognized the first big sign of relief that it was all coming very close to an end. I came out of this, but it was the slowest process and at times did not seem like it would ever end. This is a normal feeling for many sufferers. And, just after a year of going off, the majority of myoclonis and symptoms were practically all gone. Slight bit of anxiety left, yet compared to the hell I lived in, this tiny aspect deserves hardly any mention. It took months, but for a cold turkey, this was impressive...especially for an epileptic.
Most people who go off benzos do it the wise way - they taper off of them. Otherwise, you can die attempting to go off cold turkey.
I am just over a year off the k and life with a CBD/THCA protocol is unbelievable. The efficacy is stable and efficient when benzos were not in my body. Taking a benzo occasionally is almost as bad as taking them daily. It creates what is called "inter-dosing". And, being on any dose of benzo's causes you to build tolerance, unlike most of the other seizure drugs. The paradoxical effects of coming off the cold turkey for me was just plain wicked for many months.
Lucky I had cannabis protocols to save my ass and calm it down. After tapering off a benzo, you can also risk "kindling" if you go back on the benzo to rescue. It's a very difficult drug to get off of safely. Cannabis did not interfere with my healing as it does not have an affinity for your GABA receptors.
Benzos do serve a purpose for short term like issues like surgery and life threatening one-time seizure use - but long term seizure control has negative consequences when using over time. Although the pharmaceutical companies do see a more important economic need to continue getting patients on them for sleep, anxiety, restless leg syndrome...and the list goes on. It's a $80 billion dollar industry. Going off benzos means you may have to contend with symptoms which worsen to sometimes unbearable levels while in withdrawal.
Also, when using CBD, one must observe the CYP-450 Cytochrome potential for drug interactions. The CYP interference can have reactions when you metabolize certain drug combos. CBD does inhibit the class of benzodiazapines and its inducing ability, just like grapefruit. It can potentiate the benzo's actions. Ask your doctor to learn more about all of this.
Wish you the all the best in your journey and hope you can find the relief you need and deserve.
Check out the following links for more info:
The Ashton Manual - The Gold Standard for Withdrawing from Benzodiazapines
http://www.benzo.org.uk/manual/
History of Benzodiazepines: What the Textbooks May Not Tell You
http://www.psychmedaware.org/HistoryBenzodiazepines.html
Recovery and Tolerance -
https://www.facebook.com/notes/benz...ce-and-dependency-definitions/958439544237472
Tips to Finding a Doctor to Assist you With a Taper/How to Talk to Your Doctor
https://www.facebook.com/notes/benz...ses-of-tapering-off-of-benzos/716838248397604
BenzoBuddies Online Forum
www.benzobuddies.org
Beyond Meds - Start Slow Taper Plan
http://beyondmeds.com/2013/09/18/listen-to-your-body-taper-plan/
