I’m often asked to give advice/dosage opinions for specific issues and my blanket response up until now was “I never give personal recommendations.” But that’s a lie. I do give personal recommendations, but only for my friends and family who have a good understanding of the limitations of my knowledge.
But if I can help more people by being more open, then I want to. So from now on I’ll be sharing what we have found, but keep in mind this is on a personal basis and is not considered research. It is not clinical, not even close. It’s reality and it’s full of messy variables.
[I am not a medical professional and so I have no place giving medical advice. I am an expert on the molecular interactions of cannabinoids and their targets in the brain/body; I make theoretical extrapolations into my own life/cannabis/psychedelics use all the time, but have no formal training in physiology or general pathology outside of molecular mechanism.THIS IS NOT MEDICAL ADVICE OR ANY FORM OF SUGGESTION – INFORMATION AND EDUCATION ONLY]
**DISCLAIMER** I’ve written these as if we’re hanging out just having a conversation. It is my opinion based on my experience as a scientist and as a part of our commuity.The information, including but not limited to, text, graphics, images and other material contained on this website are for informational purposes only. No material on this site is intended to be a substitute for professional medical advice, diagnosis or treatment. This is our personal story – nothing more.
When I first met my wife Laine almost a decade ago, we were both headed for the grave. Laine has had severe, chronic migraines from the age of 12, had a failed brain surgery at the age of 17 that left them with only half of a non-functional pituitary gland, and was on heavy psychopharmaceuticals with severe side effects from 2003 up until our first year of marriage in late 2017.
For the first two years of our relationship, I watched Laine suffer for 5/7 days per week enduring depressing, disorienting prodromal symptoms or even worse nauseating, blinding pain that had them bedridden, living in constant fear of the next attack (which was always only a couple days away at most). Through all of this Laine pushed through the disability, developing a new public transition program for neurodivergent adults, founding a 501(c)3 non-profit for music as a social technology for neurodivergent communities, and completing their graduate degree in moderate to severe special education, transition services, and behavior. Laine’s special interest is accommodations and advocacy for all neurodivergent adults, especially those who have barriers communicating for themselves.
As of today, February 2023, Laine will get two mild/minimal migraines per month (one before the ovulation hormonal shift and one before menstrual hormonal shift – and if we travel, especially flying, or major weather/barometric pressure changes are forecasted, more precautions need to be taken). For the most part, the pain is exponentially less and there’s minimal nausea/vomiting symptoms.
"The most impactful change in symptoms has been having less severe depression symptoms, which makes the pain more tolerable. I feel more in control."
It’s an entire lifestyle for both of us (diet, exercise, boundaries, and drugs) and we have found a couple abortive medications that work (more on that later). But our starting point in this journey was weaning Laine off of all other pharmaceuticals so we could experiment with high doses of CBD isolate comparable to the Epidiolex dosing guide (pharmaceutical CBD for severe, treatment-resistant seizures).
Seizures and migraines share some mechanistic features (prodromes, trigger points, short abortive windows as they ramp up, waves of depolarization/neuronal depression etc). The doses prescribed in pharmaceutical preparations of CBD are very, very high – getting up to 20-25mg/kg per day.
***This means for an average adult weighing 75kg (165lbs) the dose would get up to 1.5-1.875g per day! That’s often more than what is in an entire package of CBD products. This is why it was essential to wean off of all other medications – CBD does have interactions with other medications. While I believe CBD is safe at those doses, if it potentiates pharmaceuticals, many can have severely dangerous overdose effects***
We started off way lower at 50mg twice per day for two weeks. It’s always best to start with the least, because in general taking less of anything is safer for our body to process and less likely to produce off-target side effects. This really didn’t do anything for either of us, so we upped it.
Next we went to 100mg twice per day for two weeks and this actually became our “intervention dose” to stop/recover from oncoming attacks now years later, but at the time didn’t produce major changes for Laine.
Finally we tried 500mg twice per day and saw some very promising changes after day 3, and more subtle, but significant changes continued for Laine for up to 4 months on this daily schedule. This dose was too high for me and I discontinued it after day 2; it made me foggy, groggy, and a little too apathetic (reminiscent of prozac or lexapro – both of which I hated).
After 5 months Laine’s migraines had completely transformed from a severe disability (MIDAS scoring) to a mild disability. It wasn’t a cure, but it was a big enough change to allow us to transform the rest of our lives… We got very strict with our diet and started a workout plan together that included hiking, swimming, biking, and strength training. Writing this lights a burning fire in my chest, because I’m so grateful to not have to see the person I love most in this world in that kind of uncontrollable pain ever again.
Years later, Laine has only had a few severe migraines since then as compared to a minimum of two per week. And since the background noise has been lowered, we can now more easily identify the triggers and avoid them.
There were some side effects. Laine’s anxiety was almost too decreased – it made them forgetful and careless with important items like phone, keys, and wallet. I once sprinted 1.5 miles from Cambridge to Somerville trying to find Laine’s brand new phone in an Uber (we got it back, but I had to trash my boots)!
To try to reduce this, we tapered the dosage back down, hoping that the good changes would be able to be maintained at a lesser dose now that Laine’s brain had spent significant time being less aggravated. It took over an entire year, but eventually we reduced it slowly down to the same dose I am at which is maintained by a 40/40/20 flower ratio.
We both occasionally need an “intervention dose” of higher CBD when extra aggravated or better yet preventatively if we know something unusual/stressful is coming up, usually for two weeks straight. This will have to be a future post.
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Since I’m sure people will ask, the two sources of CBD isolate I have used are Bluebird Botanicals and EcoGen Biosciences (both in Colorado). I have no affiliation with either company, but I did use their isolate in my research where I was able to confirm their purity with HPLC followed by H1 NMR. I have not confirmed exact batches I am using, because the research samples were different, but I trust the manufacture is done in huge batches at both so the variation should be minimal.
To be economical, we usually buy isolate in bulk once every year or so. It stores well as a solid in cool, dark places.