AVM Survivors Network


Hi. I know it’s been discussed before but not recently. Not looking for judgement, just experience. I have always used cannabis to self medicate as I have never been a fan of pharma. Never had any issues. Always helped. Never interacted with my avm which was found incidentally 2 years ago. I would love to get back to it to help with sleeping and headaches that are being pretty well controlled with Tylenol. After recently having my surgery and being on steroids for the next week and keppra for ??? I am wondering what experiences you have had. It’s hard for me to believe it would be worse than the morphine and fetenyl they tried to give me in the icu… My angio and ct scan after surgery cleared me. I don’t smoke, I vape. Never had seizures. Opinions???

Hey Kyle53,
I too use cannabis as part of my management tools. I say ‘as part of’ as I find I do still need a pharma to deal with it all just at way less dosages. I also find I need to do a bit of ‘mix-n-match’ depending on my pain and my need. Consuming the same strain and type ie heads/hash/oil I find it looses it’s effectiveness. As I’m sure you are aware, each strain has differing levels of differing and vast array of cannabinoids, so mixing it up gives me a greater overall benefit.

Here in Australia we are only just starting to get medical access, but these are pharmaceutical derivatives of individual cannabinoids and this has the disadvantage of minimising the entourage effect obtained from whole plant medications, but it is a start of having medical access, I suppose, something that 10-15years ago seemed like a pipe dream (No pun intended).

In my opinion (and it is only my opinion) anything that helps in cutting back on the opiates and other pharma concoctions must be a plus.

Merl from the Moderator Support Team

Thanks for the reply. What’s your background? Had your avm been treated? How long did you wait to resume?

Hey Kyle53,
My situation is not avm related but it is neurological all the same. I’ve endured a few neurosurgical procedures, 6 so far (with more on the way it seems). Each has been to ‘fix’ an issue, but each has only been able to manage a symptom. My initial surgery was back in 1996 and post surgery they had me dosed up on all sorts of meds. Some treated pain but messed with my insides something terrible, so they gave me even more meds to deal with that, they caused further side effects and I was given even more pharma meds to deal with the side effects. I was taking that many tablets a damn near rattled like a pill bottle when I walked. It was nasty.

I had a dr start again. He tried heart meds, epilepsy meds, psych meds and the obvious pain meds. I tried all sorts of other treatments from acupuncture to physiotherapy. From homeopathy to ophthalmology. If someone suggested it, I gave it a go. The last thing I wanted (or needed) was a dr saying “Well I suggested ‘X’ and you declined to even try it” so I gave them all a genuine trial. None of them worked, but I found that with canna and a reduced amount of pharmas I could manage OK. I returned to work and got back into life.

Then in 2013 the wheels really fell off my little wagon. I was operated on again and things were BAD. I’d pushed myself before and got back into it, so I tried to do the same again but the more I pushed the more my body pushed back. I took the attitude I just needed to push even harder, so I did. But this time I pushed too hard and ended up requiring yet further surgery and that one really did me in and I haven’t been able to return to work since. This was really hard for me to accept, in fact in a way I still have a bit of an internal battle with all of that here today. The fact of the matter is I truly have no choice in the matter, I have to accept that this is where I’m at.

I have used canna as a part of my management tools since first being dosed up on all sorts of opiates, just to be able to cutback. And although canna is a big part of my management tools it is not my complete ‘key’, I still need an opiate to keep things at a manageable level. Here in Australia that has been an issue as the laws around it vary from state to state. We now have limited access to it and due to the fact that every other pharmaceutical avenue has been exhausted by my dr’s, access has been granted. Personally I would much rather I had legal access to whole plant but presently that has not been government approved. Hopefully with little steps legal access will be eventually granted, but BIG pharma and BIG government both want to have access to the BIG $$$ and whole plant is not part of that equation. So we wait.

So that’s a bit of my history.
Merl from the Moderator Support Team

Hey there! Welcome back. I don’t pretend to know what the effects or side effects are of the medicines. However, I do know for me, I had to switch off Keppra due to lingering thoughts of suicide, which were completely abnormal for me generally.

I told my neuro-doc about it, he switched me to another antiseizure medication, and I’ve been fine ever since. All this to say, if you notice a change, mood, or new condition related to the medication change, tell your doc ASAP! There is no point taking mind medicine which dulls the brain if you can’t think at all! Check with the doc, check with your groups and friends, and know there are those persons out there who wish you all the best in your success in life! Blessings as you go!

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Certain strains of medicinal marijuana completely reset my brain injury as if it never happened

I am curious why they put you on Keppra? They wanted to put me on Keppra because they THOUGHT I might be having mini seizures. I refused to take the Keppra because I am on enough medicine for other pain issues for 2 hip replacements and a shoulder replacement. My family doctor at the time suggested diazepam which who replace my sleep medication I was on and also IF I am having mini seizures it would help that as well. My family doctor was more helpful than the “EXPERTS”. My episodes continue to this day, but I truly believe they are mini strokes like another Neurologist suggested!!! Just wish someone could come up with a real answer for my left arm and face keep going numb, lasting about 30 minutes.