4/20

Last night I had a meeting with a client who has brain health issues (not the same as mine). Her condition cannot be treated by western medicine and her own doctors are now telling her to explore alternatives. As a result, she has begun researching some less-conventional therapies.

In the course of her search she came across cannabis oil and has started using it. She has only been using it for a couple of weeks and is already noticing marked improvement in her symptoms. Last night she told me about this and also that it can be helpful with seizures as well.

Like me, she is skeptical of naturopathy and is not a fan of marijuana, but she is buying the oil with a higher ratio of CBD (which has the medicinal effects) and less THC (which gives the psychoactive effects).

So today I went to look it up; lo and behold, the Epilepsy Foundation has a whole page about this:
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/other-treatment-approaches/medical-marijuana-and-epilepsy

The gist of it is that studies are currently being done and there seems to be benefit to CBD for seizures. However, not enough research has been completed yet. They are recommending that if a person's seizures are not responding to regular anticonvulsants, CBD may be a good thing to try.

Something I will be thinking about and reading more about over the next while!

In other news, I have been having some mild episode activity over the past couple of days, more like the mild days I had before starting on the Keppra. So the jury is still out on whether the med is helping. I do think it's helping to a point, but not 100%. Will see. 

The Neurologist is In

Today I went to the Brain Health Fair at the convention centre, put on by the American Academy of Neurology, which is having a conference here this week.

It was cool, largely geared toward kids but still interesting for adults. I got to hold an actual human brain in my hand (!) and the guy showed me the temporal lobe.

They also had booths where you could speak to a neurologist so I went to the epilepsy booth and talked to a neuro there. I told him I'm in the process of being diagnosed. He asked me to describe my episodes so I tried, and told him about the testing and meds I've been having. He said that it definitely sounds like temporal lobe seizures. A few things I gleaned from the conversation:

• Seizure meds often deplete folic acid stores, so it's a good idea for me to take a folic acid supplement, especially since I'm in child-bearing years (he asked if I plan to get pregnant; I said no, but he recommended the folic acid anyway, "just in case").
• It's not weird that my symptoms started so late in life; they can start at any time with no prior symptoms (I kind of knew this but wanted to double check)
• It's definitely possible that it has been caused by early childhood brain trauma. When I was a toddler I fell out of my high chair and hit my head, lost consciousness, and stopped breathing briefly. I asked if this could be the ultimate cause, and he said it definitely could be. 
• Even though my MRI did not show brain damage (per previous point), he said that many MRIs are not powerful enough to show things like what I may have had, and if I had a more powerful MRI it might show. However, he said it wouldn't change treatment so it would just be for curiosity if I were to have another MRI.
• He was happy to hear that the Keppra seems to be working already, and said that my dosage is quite low and there is room to up it a bit. He said that as long as my seizures are responding to meds, then surgery won't be an issue, but sometimes they do surgery when people aren't responding to meds.
• He said it sounds like I'm "in good hands" and on the right track. 

Even though I trust my neurologist, it was great to get some validation of what we already thought, from a third party.

I've now been on the Keppra for a little over a month, and it does seem to be helping. Not 100% yet. I did have a small cluster of strong ones last week, but this cluster was only 3 episodes over 2 days, which is an improvement over past ones. Also, I've had virtually no other activity since starting this med. Before, I was having mild activity daily plus the strong clusters. Now the daily mild activity is almost completely gone. So if that continues between now and June (when I see the neuro again), it looks like I am on the right med. Even though I did have the cluster last week, that may mean that the med needs more time or I may need a slightly higher dosage. It's looking promising though! 

Just like Dostoyevsky

It's now been 6 weeks since I last recorded an episode in my tracker.


Four weeks on the new med.


It seems to be working.


I did have one 6-week stretch before, but even then I was having super mild activity, just not enough to record.


Now I'm having basically nothing. To the point that I sometimes forget that I have this, or think, "it's stopped so maybe I don't need the meds" (yes, I know it's the meds making it stop!). Periodically I stop and think about it because it feels weird to suddenly have nothing. I was talking to a friend about that who has lived with chronic pain and she said it's the same with her... when she doesn't have pain she has to stop and think about it and it seems strange.


I'm going to give it one more monthly cycle before coming to any conclusions, because it could come back just as quickly. But so far so good... I think the new med is helping.


Which means I will probably get a diagnosis the next time I see the neuro (in June). Partial seizures, temporal lobe. He still says complex and I still say simple, but I'm going to ask him about that and why he thinks complex (Dr Google says it usually requires a loss of consciousness, or other physical symptoms, which I haven't had... but Dr Google isn't a neurologist).


For those who want more info about what this is and means, here's a good page explaining it:
http://www.epilepsy.com/learn/types-epilepsy-syndromes/temporal-lobe-epilepsy


According to that article, Dostoyevsky had temporal lobe seizures too! At least I can claim something in common with a great author. ;)