NFC Seizures

[FlyingLow]

Does anyone on this forum have experience in treating seizures with cannabis?

My cousin, only 20 years old, started experiencing issues this last year in college and unfortunately she is increasing in frequency in spite of medications.
Any advice/guidance would be most welcomed.

 

[Tranquility]

Does anyone on this forum have experience in treating seizures with cannabis?

My cousin, only 20 years old, started experiencing issues this last year in college and unfortunately she is increasing in frequency in spite of medications.
Any advice/guidance would be most welcomed.

Is there a diagnosis yet?

 

[MSMPT69]

Hi there. I have treated my own seizures with cannabis with some success. I was on multiple medications which did not give me control and after a lifetime of using cannabis socially I tried it medicinally. I use a tincture that I make myself and micro dose with it. It does not prevent my seizures all together but dramatically reduces their frequency. Epidiolex is a CBD based medicine which has just been legalised in the UK and lots of people see a lot of success with seizures just from using CBD so I would try that first. Myself and many other people find that you need some THC in it to give beneficial effects. I would suggest trying a CBD first and then adding THC if this is not successful. As regards prescription meds then my experience is that they start with the front line drugs and then work backwards and start prescribing some pretty dated meds that have pretty nasty side effects. I get more control with cannabis than anything that has ever been prescribed. I also now have MS to deal with and weed is massive relief with this as well.

 

[Vitolo]

Does anyone on this forum have experience in treating seizures with cannabis?

I do. After a prolonged coma, I wound up with Traumatic Brain Injury (TBI) and wound up with partial paralysis, spasticity, and internal bleeding in the brain.
Another gift left with me from the coma was seizures.
I am on Gabapentin.... I took 6 of them a day for a number of years.
Since my regime of heavy Vaporization, I found that if I caught it in time ( I could know when seizure was on it's way, because my dog acted a certain worried way.. and ringing in my ears).. and vaporized, if the seizure happened it only lasted for 1-2 minutes as opposed to 5-6 minutes.
I vaporize all of the time.. throughout the day... about 3 grams+ a day.
I now only take 2 Gabapentin a day, and I have not experienced a seizure in about 7 years.
I make tinctures of glycerin and ever clear, and use medibles also.
God Bless Marijuana!

 

[1nd3cEnt]

The Lancet Neurology
VOLUME 15, ISSUE 3, P270-278, MARCH 01, 2016

"Cannabidiol in patients with treatment-resistant epilepsy: an open-label interventional trial"
by Devinsky et al.

https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(15)00379-8/fulltext

Background
Almost a third of patients with epilepsy have a treatment-resistant form, which is associated with severe morbidity and increased mortality. Cannabis-based treatments for epilepsy have generated much interest, but scientific data are scarce. We aimed to establish whether addition of cannabidiol to existing anti-epileptic regimens would be safe, tolerated, and efficacious in children and young adults with treatment-resistant epilepsy.

Interpretation
Our findings suggest that cannabidiol might reduce seizure frequency and might have an adequate safety profile in children and young adults with highly treatment-resistant epilepsy. Randomised controlled trials are warranted to characterise the safety profile and true efficacy of this compound.

 

[notams]

Yes. I have experience with seizures. My variety is referred to as a "Multiple Sclerosis Hug". Was every few weeks for a while. Last one was Sep 10, 2019.

The nane is misleading, the last "hug' broke 2 teeth and put me in the hospital for 4 days. I had cuts, scrapes and bruises all over from falling and flopping around before the big one.

What DIDN'T work: Gabapentin, Baclofen, Oxcarbazepen, Duloxetine, Buspirone. Some of these are mood stabilzing drugs for bipolar or depressive disorders. But, can be used "off label" and help with other issues. They all had mild efficacy.

What DID work: Vaporization of cannabis. So, not just weed. Potent, full plant weed. And the delivery method is essential. Tinctures are the fastest of the edible / topical world. But, the fastest I ever felt onset with tincture is 10-15 minutes. That's way too long.

Another big thing that helped: Watch out that you don't get your tolerance too high. I live in Colorado. So, I have access to potent medical stuff. I got to the point of routinely doing 1 gram dabs of 90% THC distillate. That's difficult, expensive, and stupid.

I lowered my tolerance. A big help was a guy named Dr Sulak and his website / videos called "Healer". IDK how to do links. Sorry. Anyhow. Great info on how to vape. Duh, I know. But, seriously, this guy will teach you how to breathe What I needed was fast absorption of the whole plant. Not, high doses of THC.

Dry herb vaping is the most effective method for me because it has the fastest absorbtion and uses the least meds.

So... In my experience with neurological disorders and seizure-like activity I've found the most relief from dry herb vaping small amounts routinely as a good maintenance program. But, have access to higher potency, whole plant products that can be vaporized for flare ups.

Love to you and yours dealing with this. Seizures scare the shit out of me. My brother died 23 years ago from brain cancer. I have too nuch experience with seizures that I do not want. So, no one knows your particular brand of shit you're dealing with. I can never understand your pain. But, I hope it helps to know that someone (me) can, at least, relate. You're not alone.

 

[FlyingLow]

Thank you all for the feedback... hate seeing my little cousin down like this. She was diagnosed as epileptic.

 

[Ramahs]

Does anyone on this forum have experience in treating seizures with cannabis?

My cousin, only 20 years old, started experiencing issues this last year in college and unfortunately she is increasing in frequency in spite of medications.
Any advice/guidance would be most welcomed.

Just make sure, before assuming anything here, and before taking any action based on advice from us rando's in the internet, that you've talked this decision out with an actual medical doctor.

 

[FlyingLow]

LOL~ it's not often, but I TOTALLY agree with you

Joking aside, she is receiving full medical treatment at an outstanding medical university. I do not know all the details of what they have prescribed or tried over the last 18 months, but I am confident she is receiving top-of-class medical support, treatments and medications. Unfortunately, her medications have been increasingly ineffective.

All that said, she resides in a prohibition state, so I share her circumstances with this community for advice on weed.

Her doctors have been open and encouraging for her to experiment, but can not really offer ANY guidance at all, and none have real experience treating with cannabis.

 

[notams]

Just make sure.... that you've talked this decision out with an actual medical doctor.

I must respectfully disagree.

And I do mean respectfully. I just have a visceral reaction on this subject. My rant is not directed at you - Ramahs. It's just that I hear this commonly held view of "talk with your doctors" and it just makes me bristle.

I notice you say, "talk this out" and not go any further. However, I think even "talking" with doctors on this subject is similar to teaching a dog algebra. It's an irritating waste of time for everyone.

Medical doctors are neither the keepers of this knowledge nor are they the sharers of this knowledge. My experience with most medical doctors (and I've had a HELL of a lot more experience than the average person) is their collected knowledge or willingness to share any knowledge is less than my dog's.

If anyone is seeking information on the benefits and risks of cannabis, ask a stoner, a budtender, the guy next door, your kid, randos on forum boards - anyone. Doctors are, respectively, (mostly) f'ing idiots on this subject. Their expensive education makes an educated conversation on this subject with them impossible. Couple this with many doctors being subject to an employer's or physicians group's formal and / or legal statements or policies and intelligent conversation is very difficult. I imagine many doctors would find it economically prohibitive for career advancement to be on the medical record advocating cannabis use, even in a legal state with a medical card holding patient.

I've heard, read, and know of several people who developed neurological problems because of medical doctors prescribing either too much, the wrong kind, or a bad combination of drugs. However, I challenge anyone to show me someone who developed neurological problems from either too much, the wrong kind or the wrong combination of cannabis. Additionally, I find very little data supporting negative drug interactions with cannabis, which can scarcely be said of most legally rx'd drugs.

I see your point, Ramahs, or at least I arrogantly presume I do. May I venture a stab at restating your post from above in different (my) words?

Don't replace information from your medical team for unverified opinions of strangers. Also, it might be helpful to inform your medical team of the decisions you've made on this subject.

 

[01867]

I must respectfully disagree.

And I do mean respectfully. I just have a visceral reaction on this subject. My rant is not directed at you - Ramahs. It's just that I hear this commonly held view of "talk with your doctors" and it just makes me bristle.

I notice you say, "talk this out" and not go any further. However, I think even "talking" with doctors on this subject is similar to teaching a dog algebra. It's an irritating waste of time for everyone.

Medical doctors are neither the keepers of this knowledge nor are they the sharers of this knowledge.
...

Don't replace information from your medical team for unverified opinions of strangers. Also, it might be helpful to inform your medical team of the decisions you've made on this subject.

I have epilepsy, and I know where you're coming from, but with regard to seizure medication no changes should be made without consulting a doctor first. The reason for this is that withdrawal from anticonvulsants can cause severe seizures, even in people without epilepsy. So even if you think seizure meds are doing more harm than good the withdrawal can be far far worse than your original seizures were.

I almost died because I stopped taking keppra, since I believed it was doing more harm than good, and I thought cannabis was enough to control my seizures.

What I should have done is told my doctor I needed to switch meds, and tapered off the keppra in a controlled and supervised manner.

@FlyingLow, the hardest part about having epilepsy was learning what the triggers are and coming to term with lifestyle changes. This can be especially difficult for college students. The lifestyle changes were:

1) Getting proper sleep. I can't emphasize enough how much seizure activity is reduced by getting a good 8 hours every night.

2) Eliminating alcohol. This is especially important for people on pharmaceuticals which react with alcohol (most AEDs do in some form or another).

3) Eliminating stimulants. I still have a cup of coffee in the morning, but never more than one. And that's probably increasing my risk.

There are other things like avoiding high stress situations, but those 3 are the most important by far. They're also 3 changes which were very hard to come to terms with as a college student.

 

[Tranquility]

Medical Marijuana and Epilepsy

Should I worry about drug interactions?
There are some drug-to-drug interactions that have been revealed during the studies of CBD in epilepsy syndromes. More research continues to be done examining these interactions. We know from studies that have been done:

• People who had increases in their liver enzymes to a level three times or more than normal were also on valproic acid (VPA), a commonly used anti-seizure medication. The levels of VPA were not increased when taken with CBD. It is thought that a part or byproduct of VPA may interact with CBD when it is broken down. This may put some people at increased risk for liver issues.
• As clobazam (Onfi) is broken down, a major component of the drug appears to interact with CBD in some people. This may be the cause of tiredness that is seen in some people who are on both CBD and Onfi.

 

[Ramahs]

Don't replace information from your medical team for unverified opinions of strangers. Also, it might be helpful to inform your medical team of the decisions you've made on this subject.

I don't disagree with that statement. It's along the lines of what I was saying.

What angers me that I hear far too often from individuals in the cannabis community is this "stop taking the evil drugs your doctor gives you, and take cannabis because it cures everything" attitude.

I don't expect someone in an unfriendly state to expect for their doctor to give them advice on how to use cannabis as a type of treatment. I just meant to make sure that you make your doctor aware that you are experimenting with adding cannabis to your treatments. I know that cannabis doesn't have negative interactions with many other drugs, but I would be surprised if there weren't some out there. And I highly worry about those that want to abandon the treatments their doctors prescribe without discussing it with them.

 

[TommyDee]

People have moved for favorable cannabis environments for health reasons. I take it the state also doesn't have medical tolerance @FlyingLow ?

I do see how ongoing treatment and an introduction of a foreign 'agent' may upset the quality care professionals currently providing treatment. I am in serious doubt that she would be a cannabis candidate without some very huge warnings as to the risk of loosing her current support. I have a Canadian GP very open to discuss, but not on the record.

 

[FlyingLow]

Her support system and physicians have been encouraging on cannabis, not at all what you suggest. In the US discussions with a physician are protected per confidentiality laws. If docs were threatening to NOT support her for ANY scenario, we would be finding other doctors. Your doctors are shit if that is common practice.

 

[TommyDee]

...And we're in a legal state to boot. USA doctors are protecting their licenses, as mine is. That changes perspective of course. Then the question is, can they write scripts for cannabis or make a formal -legal- recommendation. Legal medical states just gives you the right to use with less harassment. Doctor directions are optional.

 

[notams]

@Ramahs ...cool. I think we're on the same page. I agree. Many individuals who advocate cannabis medically do so as a scorched earth policy and urge people to stop taking Rxs. That's bad advice.

My rant against the medical community appears to be misplaced in this thread...

Her support system and physicians have been encouraging on cannabis, not at all what you suggest.... If docs were threatening to NOT support her for ANY scenario, we would be finding other doctors. Your doctors are shit if that is common practice.

Yes, agreed. My doctors are shit! At least all the ones I work with. I live in Colorado USA. My specialists are at UC Health Neurology Clinic. They are cowards when it comes to this subject. Shame on them.

FlyingLow, you rock. Your friend suffering from this horrible malady has a true friend in you.

May I please suggest something as an individual who needed someone like you? Please consider the benefits of mindfulness in the reduction of seizure frequency. I find an honest 'body scan' to help me medicate more appropriately. Translation: when I really think about how I feel, cannabis isn't the best solution every time.

A good mantra I practice is 'meditate before you medicate'.

Some other 'advice': I don't know her brand of seizures. Mine stem from uncontrollable muscle spasms that lead to my whole body tightening. If she needs help with relaxing spastic muscles a common approach is to use concentrated THC. That route can be expensive. Also, concentrates limit the intake methods. I find better efficacy thru whole plant cannabis regardless of the THC %.

I get as fast a response (body relaxes) vaping whole flower cannabis that is (only) 18% THC qs I do 90% concentrate. My guess is the entourage effect of the whole plant acts more efficiently on the endocanabinoid system than massive amounts of specific cannabinoids. Point is: try dry herb vaping regular ol' weed before going with expensive concentrates. Might get better results. Good luck.

 

[FlyingLow]

I love you Notam! Thanks.
Are you an airman?

 

[notams]

I love you Notam! Thanks.
Are you an airman?

No. I didn't realize the "notice to airmen" connection when choosing the moniker. I get that sometimes. I've used this name for a while.

I often make people uncomfortable when I'm in public. I use a cane and walk very unsteadily on a good day. I often have very grand and fast motions with my arms and legs. I fall down often. It's my stubbornness in still getting around. I used to say all the time, "I'm a mess". My wife of 26 took umbrage to that statement and said, "you're not a mess". Also, I have multiple sclerosis (MS). Very often people identify with the worst thing about them. My mother has been wheelchair bound most of my life. It's what she has, not what she is.

The name notams is my way of misspelling, while phonetically sounding out two different ways of saying the same thing. Who am I? I am not a mess. I am not MS.

 

[C No Ego]

have not seen it mentioned in this thread but the findings for Epidiolex are up to 45% efficacy @ reduction of seizures ... the closest other phamra med is @ 3% efficacy @ reduction ...