Seizures/how to dose CBD/medical marijuana

I agree with you with regards to the microbiome being involved. I have looked on the internet and they mentioned doing studies with the ketogenic diet and also probiotics. They mentioned 2 bacteria that are increased by the diet akkermansia muciiphila and parabacteroides. You need both together. The bacteria increase levels of GABA, a neurotransitter that silences neurons.
I have tried the ketogenic diet (Modified Atkins) in the past but had to give it up after a year due to acid reflux. I hoping someday they'll look into the probiotics approach more.

@keeg1010
Hi Kerry,
5+decades but who's counting, lol. Epilepsy, I believe is more frightening to observers than those who experience the seizures. Although I've had Epilepsy for 54 years and had over 13,000 seizures and been in induced comas for days, weeks and my longest was 8 months. When they woke me up my memory was wiped clean. Fifteen years gone. The thing that bothers me the most is I could no longer play the piano which I loved according to my family.
I have been very lucky as far as side effects are concerned. No Even after Even after around 400,000 medications my blood work is great. If I ever have any side effects they are very mild even on high doses. Oops, except Lyrica. I'm not allergic to it but I have that I am on my Medic Alert bracelet. My worst side effects are, memory balance, fatigue. Even if I had side effects they usually ease after a few weeks to a few months. I'm down to 10 Anticonvulsants a day and my seizures stopped when I switched to a brand name of extended-release form of carbamazepine (Carbatrol ER.) I took Carbamazepine years before but not the extended-release. I never had any side effects. My brother takes it too and unless he takes it with food his gets a little upset stomach.
My Neuro refuses to prescribe immediate-release drugs to seizure patients unless he can't get the brand covered by insurance and insists I not ever switch from brand to generic or vice versa and if I take a generic always use the same manufacturer.
Stanford University did a study regarding always taking the same manufacturer and found that people who switched manufacturers had more breakthrough seizures. I'm not familiar what if any criteria must be met to be admitted into the Epilepsy Monitoring Unit or to see an Epileptologist. Perhaps a Mentor or Moderator will answer that question.
If possible I'd strongly suggest getting Keegan on the list at Mayo list.
Being seen later is better than
not at all. The Mayo Clinic Comprehensive Epilepsy Center in Rochester Minnesota has been named the top epilepsy center in the United States for some years now.
Here is a Comprehensive Epilepsy Centers link in the United States.
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/
You mentioned your sons EEG's have always been normal. Has he ever had EEG’s other than the routine 30 to 60-minute tests?
I'm curious what type of seizures he has? Focal Impaired I assume and /or Generalized Tonic-Clonic.
have his doctors ever suggested that his seizures may be caused by his mesial temporal sclerosis?
About 50% of Epilepsy patients will never know the seizure cause.
regarding additional medication my own personal belief is that I would try increasing the medication he’s currently on? Others may have a different experience or opinion. How much is he currently taking? I believe that I started my Carbatrol in 2011.
Does he have nocturnal seizures or during the day. How often do they occur?
Take care,
Jake

Jake,
I am amazed at how you have been able to deal with not only the amount of seizures and different medications, but the fact that you spent 8 months in a induced coma. I think if that were to happen to my son, I might end up in the bed right next to him! I am so sorry to hear that you lost those 15 years and the ability to play the piano. That has to be so difficult. My son loves the piano. When Keegan was young, we used to play a game where I would hit certain keys without him seeing which ones and then I would give him the piano and he would imitate the keys I hit in order. I don't know how he knew but somehow he did. What type of seizures were you diagnosed with, if you don't mind me asking? I believe Keegan's are tonic-clonic (just by researching), although the neuro hasn't given me a type of seizure. Although we have no warning signs, Keegan does. He will yell out prior to the seizure but once he yells, it's within one second that he loses consciousness and falls, arms and legs spasming. They only last for 30-45 seconds. He's out of it right after the seizure. It takes him a while to be able to stand up after and then he sleeps for several hours. Keegan has had multiple MRI's, CT scans, EEG's. He's had several EEG's where they monitored him for 4 hours and they all came back normal. As I said, his MRI showed a slightly irregular and atrophic left hippocampus ("suggestive of mesial temporal sclerosis") according to the radiologist but he has never been formerly diagnosed with mesial temporal sclerosis. The MRI results have never changed since birth. Due to being premature (3 months early, grade one IVH, oxygen deprived due to cord wrapping around his neck=emergency C-section). Keegan had 2 neurologists that followed him closely for the first 15 years of his life. The first retired, the second neurologist passed away suddenly. Prior to her passing, everything was status quo and we no longer needed to see her every 6 months. She said follow up if there's any changes. In fact, when we first saw his new neurologist after his first seizure (in late 2020), she diagnosed him with convulsions, unspecified. I did learn that her bio states she is a neurologist and epileptologist. He is taking Lamactil. We started at 25mg and increased weekly until he was on a dose of 100mg twice daily. After his second seizure, we went up to 150mg in the am and 100mg at night. We are now (after 3rd seizure) on 200mg twice a day. His neurologist wanted him off his anti-anxiety med (Buspar) so we are weaning him off. She said long term use of Buspar can cause seizures and he's been on it well over a decade. So, now we are trying to figure out if we can get info on CBD dosing and see if that can replace his anti-anxiety or will he need a new one. The neuro said if the increase in Lamactil doesn't work, she'd like to add Vimpat but for now, I just wanted to increase what he's already on. Increasing that and removing Buspar is enough changes at once. I always prefer (if possible) to remove/add one thing at a time so if there is a reaction, I know what's causing it. Not the case this time. As far as I know, he doesn't have seizures at night, but I could be wrong. He has difficulty staying asleep so he takes melatonin (10mg) at night to help him sleep. He's a very light sleeper typically so I can't open his bedroom door without waking him. The seizures we've seen are always in the morning time, right around 9-10am. Not sure why that is? I do plan to take him to Mayo if we can get a referral from our insurance. I'm not sure they take both of Keegan's insurances but our PCP is working on it. If not, we also have Barrow Institute here which is a level 4 center, so that may be another option. I also plan on doing the test through Gene sight to see if we can narrow down which meds work best for him and which are absolutely not good. I'm sure you know the drill of having to take a med for at least 30 days and then if it doesn't work/help, gradually reducing it, only to try the next med and repeat the process. IF there's a test that can tell me "x" works for him, "x" will work with higher doses and maybe some side effects, and "x" is definitely going to cause him side effects, I'm definitely going to give it a shot.
I did hear from my son's PCP and developmental specialist that for some, switching brand to generic or different manufacturers could cause some people issues. I don't know if it's the manufacturing process that's different or why exactly but we try to stay with the same manufacturer.
Right now, it's a bit of a struggle for Keegan removing his anti-anxiety. We took him off Buspar once before but his anxiety and OCD got so bad, we ended up putting him back on. Really hoping we get the kit from Gene Sight soon. I was told that once they receive the kit back, it only takes 2 days before results are in.
Question for you...I'd love to know if you took Lamactil and if it caused you any side effects? I'm watching Keegan like a hawk and so far, I don't see anything negative but that doesn't mean he's not having side effects that aren't obvious.
Kerry

Hi there! Thank you for the information. My son takes probiotics daily but we've never done the ketogenic diet. He was (for 7 years) off of wheat, gluten, dairy, casein, soy, and corn. I'll definitely do more research on ketogenic and success rates. Thanks again!

Many consider Lamictal to be the safest AED. Depakote is a broad-spectrum AED that helps all types of seizures I believe. I'd ask your Neuro about it, also Phenobarbital although s/he will probably squawk when you mention it. It's cheap and very effective in many. The most widely prescribed AED I understand.
I don’t remember if I ever took Lamictal. chances are I did and just don’t remember.
Be sure to video Keegan’s seizures. They can be very helpful to the doctor.
Also you should keep a seizure diary, include time. date, if ill, sleep quality, loss of awareness or not, seizure type or symptoms of seizure, some people include diet info, eyes open/close, anxiety/stress level if possible, breathing info, any color changes. Some are very generic others quite extensive.
I believe stopping the Buspam is a good idea. I heard it can cause seizures and not only if on it long term.
The scream you hear is the ideal cry. It's common prior to a seizure.
It's rush of air from the lungs. The cry is made as the air that is forced out of the lungs and passes the larynx. The air is forced out of your lungs during the Tonic phase of the seizure the part when you become a stiff. At that time strong muscle spasms occur throughout your body.
Guess I better go to the gym. I have a 1 PM appointment. hopefully the bloody place will be burnt down by the time I get there!!! cross your fingers.
Talk later,
Jake

I have been on lamotrigine since 2004. I used to take 650 mg a day but my present doctor cut me down to 300 a day, probably because I told him drugs haven't worked for me. I have adopted a wait and see attitude but seem to be doing OK. I take clonazepam at night 0.5

I looked into getting the ER type but because my insurance wouldn't cover it I used GoodRX and was able to get it much much cheaper. Walgreens wanted a lot more. The only thing I wonder about now is maybe the brand Mariano's had had some inactive ingredients that didn't agree with me as I could only take it 1 day the 2 times that I tried it. The doctor mentioned that that was due to the way it is released and that maybe I have a sensitive stomach. I thought of going to Walgreen's and ask them if I could try just a few pills and see if there is a difference-probably not.

@keeg1010
Hi Kerry, Good Morning
All of a sudden, I am having trouble sending you private messages. I have already contacted the Help Center so as to be able to reply to you.
Sorry guys for sending this message in this discussion, but this was the only way I found to communicate with Kerry. Hope you all understand.
Thank you!

Good morning Santosha. Let me know when it's fixed. I did respond privately a message but now I'm not sure you received it.
Kerry

Hi @lhoward
I am very happy to hear that the medication with THC, THCA and THCN is working well for your friend’s daughter and that it has improved her life quality a lot!!! Reading your post, I have just remembered the story of a daughter’s renowned chef (Henrique Fogaça) here in Brazil. In February 2020 with the treatment based on medical cannabis and ketogenic diet, her daughter Olivia could stand alone for the first time (she was 13 years old at that time)! The story of Olivia and her progress is very touching as well!
I remember that my first doctor who prescribed me medical cannabis has said that people can respond differently to THC. I have tried medical cannabis with a higher dosage of THC and I did not feel well. My mother, on the other hand, has taken the same medication (she used it for neuropathic pain due to her monoclonal gammopathy) and has adapted very well.
Again, I believe there is still much to be studied and discovered about medical cannabis!
Have a great weekend!
Santosha

Hi @heal33
I have also read some studies based on the probiotics approach. Very interesting! I started to investigate such studies after reading the book “Brave New Medicine - Cynthia Li, MD. Even though this book is not about epilepsy, it has brought me several reflections regarding epilepsy. Great book!
In my last appointment with my epileptologist, I have asked about those studies. He has said that all of them are very recent. I hope more and more studies like that are carried on, bringing new hope to us :-)!
Have a nice weekend
Santosha