What It’s Like To Fight Epilepsy With Cannabis

What It’s Like To Fight Epilepsy With Cannabis

The Fight Against Seizure Triggers Persists. Controlling Them With Cancer Is A Unique Battle:

One of the biggest questions I get asked after five years of using Cannabis to stop the seizures and so much more is “Mike, how do you do it and what do you use”? That’s a very tricky question to answer for two reasons.

There are multiple types of Epilepsy and Cancers as well, so I wouldn’t want to infer that whatever I’ve done would work for another as there are billions of human beings on this planet with individual metabolisms and physiology so everything works differently on everybody. That’s the basic philosophy used. I also use so many different delivery methods especially for Epilepsy – but that statement gains more attention and will immediately bring up another question “What is a delivery method”. Let’s go through some of the common questions that are asked and I’ll give you my version of the answer.  By far this is not limited to Epilepsy as treating multiple health problems successfully with Cannabis is how I stay alive.  My hopes are that someday everyone has access to the plant and it’s incredible healing powers – until then let’s learn together!

I am no ‘expert’ in my opinion – I’m just a patient like you that’s gained a different type of perspective by having involvement in the past with large compassion programs and currently as the Director of Communications and more for the American Academy of Cannabinoid Medicine. I work with experts and with them, but we don’t see eye to eye on everything as I believe patients have outgrown doctors in knowledge on how to dose and use cannabis.

Doctors have started to learn more and there are a few experts that know so much about the body and the Endocannabinoid system but seem to not understand many of us that have theories regarding the difference in human physiology – the fact that we’re not universal creatures.

This, I believe, is why Rx medications have failed in an ugly way for the most part. Now don’t get me wrong, many people also stay alive due to the modern treatments or pharmaceuticals.  Others, however, will perish to overdose, serious side effects, with cancer the known possibility of death due to the type of ‘modern treatment’ – or like I was and am – ill due to the simple lack of plant medicine properly delivered to my body over a period of time. I’ve used cannabis for decades but I’ve only used it right, as an effective treatment,  for 5 years. And that meant ingestion of the plant in one way or another.

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While fighting my own battles and assisting others, it’s always been inspiring to watch the kids that fight so hard. Whenever times got rough and alone I’d be picking myself up off the floor or lying in a hospital bed after the fact, whether in ER or already admitted, thinking of the kids that didn’t know what was happening to them always made me toughen up.  Now I have Genevieve with me daily as a hero that fights seizures – and with the plant as her armor. If she can do it,  so can I and we both rely on the same thing – the Cannabis plant and our loving family.

As we both are fighting the same thing, in essence,  Severe Refractory or Intractable Epilepsy, the type of protocol is somewhat the same. Minus inhalation for her of course. I’ve found that I’m not alone – other adults that are doing well with various types of Epilepsy are using both ingestion and inhalation as well. I’ll go deeper into that as it seems to be a very intense subject that many ask about quite often.  With kids, we keep it to ingestion as long as possible and try the most subtle approaches unless otherwise is indicated, such as with our Genbug.

Q. What is a Delivery Method? It’s how you use Cannabis. Some will smoke or vaporize the actual flower from the plant, and others will vaporize (using vape pens often with replaceable/refillable cartridges). Some vaporize by ‘dabbing’ of concentrates of THC, CBD, or even both as I do. The most medicinal way in my opinion is through digestion of oils that have concentrated amounts of Cannabinoids. THCA, THC, CBD, CBN, CBC, CBG – so many different cannabinoids we know of and many others we don’t – all in this amazing plant that we can literally eat raw or take in oils and more.

There’s also salves and other products for the skin including anti-aging that I’m not including in the ‘inhale/ingest’ discussion. Through the years there was even a Tea created and the name coined after my love of purple! There’s suppositories,  transdermal patches, chewing gum, edibles of all types – the list goes on and on. But, if you stop and think about it much of this can be divided into two types of delivery.  Internal via digestion or by Inhalation. All deliveries have a different effect. The biggest being that inhaling higher THC cannabis either by smoke, extracted oil vapor, or concentrated dab vapor – the same thing happens. Signaling occurs in the brain with a bit hitting the body.

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Q: What’s the difference between smoking or vaping and ingestion?

Quite simply the inhalation method tends to gain the attention of Cannabinoid Receptors located in the brain which is why the user gets a fast ‘head rush’ from THC and other activated cannabinoids that cause this as discussed. The length of time the person is ‘medicated’ is much shorter with inhaling than via digestion.  I use inhalation to give me immediate relief from anxiety and other symptoms (aura types) that are associated with the triggers of Epilepsy.

By inhaling a strong THC concentrate I find that I am immediately medicated much more than any Rx rescue medicine, but others prefer a different delivery for the exact same feeling of relief whether from anxiety, pain, or other health issues. So many in our society have slowly changed their position about people that smoke ‘weed’ ‘pot’ ‘marijuana’ – there’s so many names for Cannabis it’s incredible.

Ingestion on the other hand tends to activate the entire body’s receptors creating a much more intense medicine. Instead of hitting only half of the receptors of the Endocannabinoid System ingestion of a full spectrum THC plus other cannabinoid infusion will hit all of the receptors.  I may not be seizing radically by the day, but certainly feel like I might at times. Now some have reported the Cannabis CBD or that which comes from buds to be working extremely well – I’m one of them as I use it for all of us in the family. I don’t have quite the same luck with isolated CBD, but others report that it helps them. I’m looking for control of a radical type of Epilepsy and Cancer as well. We treat multiple ailments from Autism, Anxiety, and Arthritis in the A column alone, one plant to replace multiple medicines.

Some professionals in the industry prefer Cannabis and Hemp be the terms used. Most dislike the word Marijuana but others simply don’t care. I know multiple older cannabis experts that still call it dope! The decades of terminology that seems to stay put with those that have been using it far longer than those that have been looking to profit from it I believe are here to stay despite the desires of many. But let us get onto healing with the plant, that’s what truly matters! Inhaled Cannabis is the term I’ll use as I don’t care about the politics of the words, I care about people learning how to stop seizing and feeling better from whatever the health issue is.

The world doesn’t realize what we go through.  The amount of anxiety, loneliness, and depression people with Epilepsy and other illnesses have is internalized and bears an incredible weight upon the person. With Epilepsy – over 50,000 people perish annually, often in their sleep. Some of my online friends will check in with a simple message “I made it” in regards to living through the night. Many can’t imagine that fear as they do not live with a label known to take lives with zero notice.  In our world, we’re very aware that one of the top neurological disorders in America is at the bottom of the list for funding of research. Now let’s talk about ingestion of cannabis to rid us of these problems!

Q: Mike, why do you like ingestion and inhalation both?”  Wow, that’s got to be one of the top questions I’m asked as well. When you ingest cannabis in its various forms it does much more than hit your brain’s main endocannabinoid system and the receptors within the cerebral cortex, instead you’re looking at exciting or activating ones that are located throughout the body and concentrated in the CNS and immune system – literally hitting all of it’s receptors vs half of them.

So when I ingest oils they move throughout my internal organs and treat me from the inside out. Since I’m also fighting Cancer, this is imperative. I also use topicals at times, cannabis-infused in oils put directly on the skin which I don’t include in the inhalation/ingestion topic.  Even if I wasn’t in a cancer recurrence I’d still be using some infused oils daily as the combo of both inhalation (for me I like vaporization but also smoke) and ingestion is the key for both myself and Genevieve. Without ingestion of oils, I know neither of us would be doing this well. I know it keeps me alive. As an adult inhaling it, I believe in my own theory, it activates the entire system by making what we’ve ingested come to life in a whole different way – much more medicinal and much more value by combining these intake methods.

It also takes the people that surround you to be aware of what you need and to be responsive for you. Without the team we have here it would have been beyond difficult to battle the problems that still face both of us. Both Gen and I still have Epilepsy regardless of seizure control. We both ingest quite a bit of infused MCT to gain the cannabinoids we need along with the ketogenic ability of the base oil itself.  So whatever you are using make sure you’re eating some of it or ingesting – it’s a must.

Also make sure your ‘team’ is aware of what you use and whatever Rx medication you still take. Without a quick response from Mom both of us would be subject to what a trigger can do. I like the fact that infused MCT can easily be used as a rescue – it takes 4-5 ml but that’s not much and it’s great for the health. One thing we always aim to do is rescue before a problem occurs, and it works.  With a ton of autoimmune difficulties, some medications have caused side effects that trigger a neuro-response. Thankfully Genevieve and I have a team from the youngest to oldest in the family that are all knowledgeable on our specific needs.

Back to digestion and inhalation – I need both to do the job. I’ve found many times that both used simultaneously, literally eat some infused MCT or Olive Oil, and then dab or smoke as it’s melting in my mouth. seriously does the trick and can last for many hours. I call it the double whammy and it stops any feeling that is associated with Epilepsy, Anxiety, PTSD – even depression and symptoms of these neuropsych often situational multi diagnostics are within just about every illness imaginable. Sometimes I’ll use a stronger Supercritical CO2 extraction that’s been turned to ‘THC Distillate’  if its needed.

I continue to use various products as I’ve found there’s few others I can talk to (sometimes nobody else) that’s recovered from the same diagnosis – Severe Refractory Generalized Epilepsy and has found a way to manage it with Cannabinoids. Finding others that have it documented in medical records is even harder. One thing I do see too often nowadays are claims by people that are ‘seizure free’ – we don’t know if that’s the case if an EEG isn’t connected to us. Sometimes I see it along with an ad for a product – nowadays I’m very leery of this.  I try not to associate myself with products at this time as I’m not a walking ad for anything but the plant. Maybe that will change, for now – I’ll stay a patient. After all, there is a huge industry out there and people will do quite a bit to sell products, although I find that this is limited and most have good intentions. Let’s get back to nature and I’ll try not to get off track!

Back to the battle for independence and wellness. For me,  it takes changing the strains and how I intake it.  Many get hung up on what strain and ratio to use. I literally don’t care as long as it’s clean cannabis and it’s got the terpenes and more intact as well as fitting the purpose. For example, I’m not looking for a straight sativa or dominant hybrid alone but will mix it with Indica to make a nice mix. I don’t go off of ‘keep it the same’ – I go off of ‘change it up’.

Why? Because keeping it the same has proven to not work unless the same is of a quality I don’t see on the market but would love to see created and available for everyone – that would take a change in federal law.  Anyway, after a while it becomes intuition in deciding what to use or even make – I literally know my body and what/when it needs. My EEG may be clear but I still have problems at times. When I ingest infused oils they are lower in THC and are subtle, if it is a full extract thick black oil, for example, it’s much more intense and high in THC – definitely can cause a bit of a medicated feeling like inhalation does. I prefer to infuse MCT coconut, olive, and other oils infused with cannabis vs. using the strong RSO types as there are multiple issues with both the long-term use of oils prepared with solvents and whether or not the oil is clean.

Dr. Alan Schreiber is a farmer and researcher in Eastern Washington where he grows a variety of crops including marijuana. (Photo by Rajah Bose) He’s also known for having expert extraction on site with the cleanest of oils.

Stopping severe refractory seizures that can and do kill means sometimes you may have a partial onset – or the start of one. This comes with panic and so much more – those of you with Epilepsy or any health issue associated with panic know exactly what I’m speaking of. Sure, the neurologists can’t find a trace of it in the short EEG tests they do on me –  there’s enough cannabinoids in me to literally beat it. “Great job” I might tell myself, but still  Epilepsy will forever be part of life and the “Purple Family” of Epilepsy Warriors and parents I adore come with that – must say I don’t mind that part at all!

Regardless of our diagnosis, illness, or struggle  – we’re all in this whole Cannabis fight together. But more importantly we’re all on this earth together to help each other.  We do this by gaining knowledge of people’s specific needs and carrying out acts of courage nowadays that I call kindness. We live in a brutal world, that can’t stop any of us from spreading the word of how we treat our problems with Cannabis or how we should be loving each other.

Does Cannabis stop the seizures for me? YES.  How? By interrupting the interrupted signals in my brain and redirecting them to where they should be going. That’s the simple way to explain what I’ve learned via treating myself, others, and extensive research. Sure I could quote studies and so much more, but I’ve found many of them to be highly objectionable. How could the application of cannabinoids or cannabis on me be compared to a rat, mouse, kangaroo, or even a small group of other people? We’re all unique. Some people respond really well to CBD. I did at first with vape pens and ingestion of it coupled with ingestion of raw cannabis. That’s literally how I stopped seizing why I look at both of the basic delivery methods as the way to go. At first CBD alone and ingestion of raw Cannabis was the trick to gain full control but I found that changing what you use or your ‘protocol’ is imperative at times.

A good friend with Epilepsy came and saw me and we discussed this. A person that never inhaled before started doing so with very small amounts along with a THC/CBD combo infusion of oils. Guess what? It also worked for her – another adult with Epilepsy that had serious seizures interrupting life is now experiencing the ‘Awakening’ as I call it. It’s when a person stops seizing and starts remembering the life and past events.  Medicated on Cannabis is how I remembered all of the past that I had forgotten due to a 1995 high-speed auto racing wreck.  For others, the exact same thing happens, if indeed, they stop a severe seizure pattern. It’s an incredible feeling. Much like going into remission using cannabis – and I’m not talking cancer. It could be an addiction, alcoholism, Lupus, Lyme’s, Pain Management or literally any health issue that overcomes and causes a person to have a renewed life based on the use of Cannabis.

When I first gained control over severe back-to-back grand mal seizures in 2013 the awakening was incredible. It almost scared me and still does some days. Having a life again means that people are no longer going to be watching over you as they did when you had Epilepsy that was very active.

With any health issue that has others on edge one gets in a pattern, and that pattern is indicative of reliance on others vs. yourself. Suddenly the reliance on others ends because no longer are you ill. Boo-hoo so one would say – You’re free! But, that’s why I wanted to write this blog! Even today as I use multiple strains and multiple products I still have this edge to me at times, I do right now as I’m typing. On edge, hard to explain but easy with others that have Epilepsy for some reason as most know exactly what I’m talking about.  The only difference is my likelihood of a seizure is probably 95+% less than others feeling this way only due to Cannabis. A partial onset or a brief stare off absence could happen and does with no notice of it by any other – the EEG still comes back negative.

A neurologist wants to do a 7-day study of me in the hospital and ‘turn his eye’ at the cannabis oils I use while hooked up to the machines. “Why would I possibly want to do that,” I asked him in his office. His response “To see what happens, I’m curious and the insurance company approved it.” Wow, so the insurance company approved a $30,000 hospital stay but doesn’t pay for the medicinal cannabis I use that works.  This is the world we live in.  I denied his request to use me as a test tube rat and let him know I’ll continue to go with what causes that EEG to be negative!

Going through the last 5 years of doctors hasn’t been simple. Sometimes I’ve had to demand to either notate Cannabis Oils and CBD oils by milligrams per day as medicines on the list of medication – or I find another doctor and did over a half dozen times, hasn’t been simple. Intimidation is no longer an issue in doctor appointments most of the time – and that doesn’t bother me, it’s the mannerism of many physicians that do.

We are people, not to be processed through a facility but to be cared for. Much of that has been lost in what was once doctors that practiced medicine and is now a medical industry. People are treated poorly because they choose to inhale Cannabis instead of ingesting pills. The facts are simple, statistics are showing 25% on upwards of close to 50% of pain patients either moving over to cannabis in full or in a huge part. No longer wanting to consume Rx drugs that they know kill. I should know…  I am one of them.

This is why when I discovered that both inhalation and ingestion was the key I went for it full force and have not stopped. Infusion of oils is very simple. Many people make Cannabis Budder (butter),  instead they could be using MCT coconut oil and keeping the temperature at or below 220 to not break the ‘chains’ of the Medium Chain Triglyceride Coconut oil. Of course many would argue they want their budder to make edibles with! So be it, I just made some myself!  Infusing Cannabis into natures oils has proven to be simple and super effective – especially using higher quality Cannabis material. MCT oil is a bit more temperamental than others but has so many health benefits.

Olive oil is not so sensitive and various temperatures can be used to activate the plant.  I look at it simply.  I don’t want to have long-term ingestion of any oil that could possibly have solvent in it,  but will do so short term as long as I have the labs that say it’s clean since It’s a Cancer battle along with Epilepsy once again.  So, to wrap this part up, fighting severe refractory generalized epilepsy with Cancer is very much different than fighting partial onset seizures or complex partials.

Many aren’t aware that there are over 40 different types of seizures and countless types of Epilepsy diagnostics.  There’s 1/3rd of us roughly that don’t respond to medications, for me 27 different pharmaceuticals were tried over an 18 yr. period and when I started using oils I was on 12 medications/48 pills a day for Epilepsy.  That’s been narrowed down to one specific Rx for Epilepsy now with 4 tabs along with my various delivery methods of cannabinoids of all types.

My motto?  Don’t discriminate against anyone cannabinoid, it’s unfair as they all have functions far beyond knowledge already gained. We, the people with Epilepsy and other health issues, have lives that sometimes cause us to stay shut in.  Sensory overload, I compare it to what I’ve seen through the years with Autistic children, including my own. Having a neurological problem like this means that we have to watch for all kinds of things.

Being careful about that lighter flickering in the dark if I’m smoking a bong load is crucial to this day, I don’t know if it’s the anxiety or a tad of PTSD over being intubated and put into ICU over 3 dozen times due to status epilepticus that could not be stopped (non stop grand mal seizures that require the patient to be put into a drug-induced very temporary coma generally with propofol).  Either way, our lives are affected in a brutal manner.  Many of my adult friends are a bit bewildered at the fact the FDA is about to approve a CBD only drug that supposed to be a natural extract but they will not be allowed to get it, even if they have a similar diagnosis as I do.

Limited FDA approvals for ‘cannabis drugs’ that are easily obtained throughout the US already seem a bit ridiculous. I feel bad for my friends in other states I can’t help due to strict laws. It’s a feeling inside that keeps a humble attitude intact. I hope, pray, and wish that every last person gets the ability to be nervous about seizures because they simply aren’t having them like they used to.  I hope that all of my friends suffer social anxiety standing in long lines waiting to take Amtrak trains across the country – alone!!! What do I wish for? Independence for all – so what – we deal with anxiety like everyone else, it’s just new for us. It’s not different than anyone else in any other situation that now has freedom – it’s a whole new world to make the best of it.  Everyone is battling something,  always be mindful of this.

That’s how I fight Epilepsy with Cannabis. I keep on persisting until I find ways to make the very best of what’s happening regardless of whatever obstacle or hurdle there is to leap over. In addition, I searched and finally found a doctor that would keep all records from all other doctors so I could document the last five years in a combined medical record. Also, I found an expert in Cannabis right in my own town and eventually went to work to help the whole legitimization of our medication as a volunteer at first.

We all must look to our doctors and ask them a simple question “Are you certified in Cannabinoid Medicine?” This should be our line of question and approach to a doctor vs “Is it okay for me to try CBD or Cannabis oil?”  I had to take control. Sure, this meant I lost some doctors at first but soon after I let them know up front and as well found a way to get the oils on my chart,  it became easy.  Nurses are always an excellent resource as they’ll ask you a valuable question ‘Have you started any new medications or changed any doses’?  What an excellent opening…

This the time to state ‘yes, I’m using a CBD oil supplement at 50mg a day’.  Or whatever you may be doing – I used ‘I’m using CBD supplement at 100mg day and C.O. at 500mg’.  The Nurse writes it onto the medicine list in pen at that time then a receptionist or administrative assistant does the data entry.  One doctor questioned me about this 3 months after I first had it listed! Now that was an interesting conversation as she sat in there and vividly listened to how Cannabis oils had changed my life. If I had this link back then I would have shared it, I hope patients will encourage their doctors to learn. Here’s a link to the The American Academy of Cannabinoid Medicine that may help them learn.    http://www.aacmsite.org

Doctors don’t have to be without knowledge and patients don’t have to feel like they’re under the gun when trying to talk to their physician about how to treat Epilepsy or any health condition with Cannabis.  Don’t expect a huge nod to go forward and a bunch of advice, you’d have to find one of the few specialists out there that knows this information – if your insurance covered it or if you could afford the visit.  This is why we all have to take our medical problems into our own hands as much as we possibly can.

There are uses for western (modern) medicine and there are also disasters that can occur due to it in my opinion – especially when a patient starts to take pills due to side effects from pills. I’d rather take a different cannabinoid (CBD) to offset the feeling of others (THC, CBN) if necessary or combine them all and gain the very best medicine I can from the plant.

Fighting Epilepsy with cannabis is always a unique battle. Keep that in mind when you see universal dosing and advice given. The same goes for almost every other medical problem cannabinoid medicine is used to treat. Always keep in mind a large number of types of diagnostics and types of seizure disorders – it’s just like cancer. There are nearly 100 or more drugs for Epilepsy because of the vast spectrum of the diagnosis.

Mike Robinson, Medicinal Cannabis Patient,  The Director of Communications – American Academy of Cannabinoid Medicine ~ Santa Barbara, CA.

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