Epilepsy and L-Theanine

a820e13f

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Hello there,

I would like to ask if you can help me in interpreting some results of a research and also in sharing some experience.

I have temporal lobe epilepsy (becuase of hippocampal sclerosis) and i would like to try L-Theanine for sleep problems. Currently i take no drugs for epilepsy or anything else.

The only available research (https://www.tandfonline.com/doi/abs/10.1179/1476830512Y.0000000033?journalCode=ynns20) which examines the connection of L-Theanine and epilepsy states, that it decreased the chances for focal seizures, but increased the chances of generalized seizures.
Does this mean, that if one have focal epilepsy seizures (like me), then it can even help, but in case of having generalized seizures it will make things worse?
Or does it mean, that regardless of the epilepsy type, it can cause generalized seizures, even if the user never had them before?

Is there anybody with TLE of HS who takes L-Theanine?

Thanks in advance.
 

Nakamova

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Hi a820e13f!

1. I would be wary of a supplement that can potentially lower seizure threshold, even if you have no history of generalized seizures. Seizures can progress from one kind to another. You should consult with your neuro before adding any supplement, not only in regards to seizures but to make sure it won't interact with any other meds (such as blood pressure medication) that you may be taking. :)

2. There are other supplements that can potentially help with sleep (such as magnesium or CBD oil), that don't have seizure-related side effects. Have you looked into any of those?

3. If you are determined to take L-theanine:
A. Make sure the brand of supplement is reputable as possible. Supplements are unregulated so it can be a roll of the dice when you take one.
B. Start with as small a dose as possible.
C. Be wary of side effects -- everyone is different, but known side effects include headaches and dizziness.
D. Consider taking it every now and then, rather than daily -- you're less likely to develop a tolerance, and it's less likely to have negative impacts on the brain.

So, in sum: Ask your doctor, consider other ways to improve sleep quality, and proceed with caution!
 

Porkette

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Hi a820e13f!

Welcome to the forum! I've had temporal lobe epilepsy for 49 yrs. and I had surgery to reduce my seizures.
When they did the surgery the found the the right hippocampus had shrunk and gotten hard from yrs. of seizures
so they removed it.
Personally I wouldn't take the L-Theanine because it may make the seizures worse. What you need to do
is have a sleep study done along with an e.e.g. at the same time and this will tell if you have a sleep disorder that
is causing the seizures. I had one done a few yrs. ago and my Dr. found I was having seizures in my sleep.
Nakamova is correct the CBD oil (med marijuana) does make you sleepy. My Dr. ordered me to start using it back
in 2016 and it not only reduced my seizures but it helped me sleep very well.
To find the correct seizure med for yourself ask your Dr. to do a DNA test on you by doing this it will show
your body chemistry and the amount of enzymes in your liver. The Dr. can than find the best seizure med for
you with the least side effects or the test will show if you are drug resistant like me.
If you haven't started keeping track of your seizures get a calendar and write down what time the seizure
happened and the type of seizure you had also take note if you are sick or if there's a low pressure in the weather.
A low pressure and being sick can sometimes trigger seizures for a person. My Dr. found a pattern in my seizures
as to what day's of the month and what time of the day and night I was more likely to have seizures.
I wish you the best of luck and May God Bless You!

Sue
 

a820e13f

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@Nakamova:

I have untreated focal epilepsy since 2001 and never had any generalized seizures, just deja vu-s. How much chance there may be that it will progress to generalized because i take L-Theanine?
I have no doctor right at the moment and i do not take any kind of drugs now.

I've tried magnesium, but it did not helped. Cannabis is out of the question, even if it's legal/available here, i don't want to cause even more damage to my brain with THC.

A few years ago i already tried L-Theanine with a very small dosage for a few weeks, but it did not do anything at all, either positive or negative. I don't remember if it was 50 mg or 100 mg, but now, i would like to try 500 mg. I also drink green tea sometimes, since my childhood and nothing happened. (I know that is a very low dosage.)

@Porkette:

Did the surgery stop your seizures? Are you cured now? I hope very much.

I don't have a sleep disorder, i already were at sleep study and sleep training. It's just, i have so much anxiety, that i cannot really sleep more than 5-6 hours. A few years ago i could sleep 8 hours. Getting sleepy is not a problem, getting asleep is not a problem, sleep enough and have a real deep sleep is the problem. When i took Helex (because of a misunderstanding, i got them for sleep pills) for a few weeks, my anxiety went away and i slept great (until the tolerance has been developed). I found that this was because it affected the GABA receptors. This is why i would like to try L-Theanine.

I don't have a doctor right now and the examinations you've suggested are most probably unavailable here. My doctor did not order these, just gave me Lamictal after i was confirmed with TLE (after 16 years went undiagnosed). I took that, but right after i started, i got brain fog and stopped taking it. But the brain fog did not go away. My health never recovered since. My doctor did not care. I've seen another doctor, but i got nothing, no examinations, no anything, just wanted to give me a different med. I don't want to try another med. I'm considering the surgery, but that costs too much money and i don't even know if the doctors are willing to do it. They don't care about people's health, they don't do anything, but write the prescription for drugs. Sometimes without any examinations and/or explanations. Most of the time, they don't even know what is our illness, but neither they care. Here are some drugs.

I am tracking my seizures and most of the times, it's two or three weeks between two seizures. At bad times it's a few days, at good times it's a few months. I don't think i have seizures during my sleep. At least i did not had any during the 24h EEG. Also a few years ago i had no problem with sleeping.

Thanks for the good wishes. Same to you.
 

Porkette

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Hi a820e13f,

The surgery reduced my seizures but didn't stop them. I knew that was going to happen before the surgery.
After I had all the testing done to make sure it was safe to have the surgery my Dr. told me I could lose my sight
so they couldn't remove all the damage but they removed 75% of the right temporal lobe and all the right hippocampus
and it was a great help. I have seen many neuros over the yrs. but I got the best help going to an Epilepsy Center
and seeing an Epileptologist. This Dr. knew so much more about epilepsy and how to control it than other Drs. I had
seen over the yrs. Have you ever tried taking vitamin B12? this is one thing that has helped me a lot and you can buy
it over the counter my Dr. told me to take 100 mcg. once a day but the weirdest thing that has reduced my seizures even
more than the surgery was taking 2 Tablespoons of apple cider vinegar with mother in it. I started using it to lose weight
but after a few months of taking it I noticed that my seizures had reduced also. I did some research on it and come to find
out the mother which is a good bacteria and good protein is what has helped me.
In regards to the med. marijuana I buy it and it has no THC in it you can check it out on healthyhempoil.com if you are
interested I buy the mouth spray and it works great and take my word it can make a person sleepy.
I wish you only the best and May God Bless You,

Sue
 

Nakamova

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I've tried magnesium, but it did not helped. Cannabis is out of the question, even if it's legal/available here, i don't want to cause even more damage to my brain with THC.
Cannabis in the form of CBD oil or gummies does not contain THC, so that's what I was suggesting. I agree that products with THC would be a bad idea!

When I occasionally need a little help to sleep I use a supplement called Supersnooze (available on Amazon). Ingredients are calcium and magnesium, but also passionflower, hops, valerian, chamomile taurine and melatonin. Perhaps something similar would help, though again I would advise caution with anything you haven't tried before.
 

Nakamova

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I have untreated focal epilepsy since 2001 and never had any generalized seizures, just deja vu-s. How much chance there may be that it will progress to generalized because i take L-Theanine?
Unfortunately there's no way to predict, since everyone's epilepsy is different. I would be careful about taking a larger dose or a daily dose -- from what I've read, more is not always better with L-Theanine, and you can also build up a tolerance.
 

a820e13f

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Sorry for not replying this long, but life buried me for good for awhile...

@Porkette:

I've tried B12, but i don't know if it helped or not, because my seizures are happening with a very stochastic timing; sometimes i have several months between two seizures, sometimes i only have a few hours (but this latter case is very-very rare). Usually there is 3-4 weeks between them. However, sources i read on the internet told me, that with TLE, surgery cures ~70% of the patients, they don't even need medications after it.

My problem with sleep is not the inability of being sleepy or being unable to fall asleep. I am anxious due to amygdala activity i cannot have a decent deep sleep and usually i only can sleep 5-6 hours. I can sleep enough to live, but not enough to get better.

@Nakamova:

Some of these i tried but none of them helped. There was only one thing what helped and that was Helex which is a slowly absorpting benzodiasepine. That put my amygdala to rest, so i too, could rest. I was very alive for a month until BZD tolerance developed, i could sleep, work and even it decreased the number of my seizures. But then again, benzos are toxic and also, one adapts them to quickly. However, benzos are stimulating the GABA receptors, so that might be the key to restore my sleep and L-Theanine is a precursor for real GABA and it can bypass the blood-brain barrier. This is why i would like to try L-Theanine. To the best of my knowledge, one cannot develop tolerance for L-Theanine, but then again, i might be wrong.

@All:
About CBD oil and THC, these studies claim, that there is some THC and by heat CBD oil turns to THC:
(Obviously there is no several hundreds Celsius inside a human, but perhaps with less heat, less THC will appear? I'm not adept in chemistry.)
 
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