Melatonin : A Cautionary tale

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

A

AlohaBird

New
Messages
1,920
Reaction score
1
Points
0
I just had an AHA! moment although it is difficult to shout AHA! when your tongue is sore.

I used to have very poorly controlled nocturnal seizures often three a night and three or four nights a week like that. I refer to that as my zombie phase.

Now it's not nearly so bad maybe once or twice a year, usually when something extraordinary happens like i miss my meds for two nights in a row.

Then the last three nights in a row I had auras that woke me up repeatedly and finally last night I had two grand mal seizures.

Needless to say, I feel like death on a Triscuit today.

But I kept wondering why. This is not normal for me. The only factor in my life that is different right now from everyday is that a dear friend of mine is visiting from the mainland. She had been raving about the melatonin she was taking and how it cured her insomnia so I thought I would give it a try as well

First level research reveals that many AEDs deplete natural melatonin. Great. This might be my wonder pill.

Second level research reveals that it depends on what kind of epilepsy you have, where it is located in the brain and that, for some people, especially those with nocturnal seizures, it can actually make the condition worse.

Melatonin may work wonders for you but I am pretty sure it's why I had a bad night. (Also, last night I decided that one pill might not be enough and took two. Brilliant. I know.)

So I guess the takeaway is this : The answer to ," Is melatonin good for you?" is a big fat, "It depends". With an extra side order of caution if you have nocturnal seizures.

Sorry for the long winded rant.
I just didn't want anyone else to go through this.
 
AlohaBird said:
But I kept wondering why. This is not normal for me. The only factor in my life that is different right now from everyday is that a dear friend of mine is visiting from the mainland. She had been raving about the melatonin she was taking and how it cured her insomnia so I thought I would give it a try as well

First level research reveals that many AEDs deplete natural melatonin. Great. This might be my wonder pill.

Second level research reveals that it depends on what kind of epilepsy you have, where it is located in the brain and that, for some people, especially those with nocturnal seizures, it can actually make the condition worse.

Melatonin may work wonders for you but I am pretty sure it's why I had a bad night. (Also, last night I decided that one pill might not be enough and took two. Brilliant. I know.)

So I guess the takeaway is this : The answer to ," Is melatonin good for you?" is a big fat, "It depends". With an extra side order of caution if you have nocturnal seizures.
Click to expand...


It does all depend on what type of seizures one has, where the seizures originate and what other AEDs one is taking as to whether one can take any herbs such as melatonin. In my case, I have refractory E and have had CPs, and TCs morning, noon and in the night, so I'm not going to mix and match my AEDs with the herbal meds. It could be deadly. This is nothing new to me.

http://www.epilepsy.com/learn/treat...psy/other-treatment-approaches/herbal-therapy

. . Helpful or Harmful or We Don’t Know?
In past centuries before modern seizure medicines were developed, people with epilepsy and their doctors looked for a remedy in various herbs and combinations of herbs. Occasionally they found one that seemed to help. None of these remedies have been proven to be safe and effective. Unfortunately, some of them can make seizures worse by causing seizures, or by interacting with prescription seizure medications. Even though some herbal medicines are available as dietary supplements, they are not necessarily safe for people with epilepsy, just because they're "natural."
This is not to say that if you have epilepsy you must avoid every herb, down to that little piece of parsley on the side of your plate. There are hundreds of possible herbal remedies, and our knowledge of their effects is far from complete. Testing a potential medication in a controlled way in a large number of people is an expensive venture. Little research of this kind has been done with herbs, but it’s beginning to happen now. For example tests are being done on an ingredient that is related to medical marijuana, and another that comes from a Chinese moss plant.


.......A complicating factor is that people with epilepsy may get undesirable effects from an herb or herbal combination that is safe for most others. It appears that a few herbs (including some common ones) may directly increase the chance of seizures. Many others can interact with seizure medicines, either causing more seizures or worsening side effects. Of course the effect is different depending on what kind of seizures you have and what seizure medicines you take.
Click to expand...
 
Cint said:
I'm not going to mix and match my AEDs with the herbal meds. It could be deadly. This is nothing new to me.
Click to expand...
Sometimes I see nothing wrong with alternative medications as supplementary to an AED regimen.
I don't think it has to be all or nothing. But the research needs to be thorough. Especially when playing with what is not even an "herbal" medicine per se. Melatonin is a hormone produced naturally by the body. Given the hormonal triggers to so many seizures, this needs extra caution.
 
I think other members (Epileric, ColmanMac) have found that melatonin made their seizures worse, particularly in larger doses.

These threads discuss some of the pros and cons:
http://www.coping-with-epilepsy.com/forums/f22/understanding-melatonin-people-taking-too-much-14491/
http://www.coping-with-epilepsy.com/forums/f23/melatonin-experience-14969/
http://www.coping-with-epilepsy.com/forums/f23/melatonin-way-prevent-seizures-your-sleep-11485/
http://www.coping-with-epilepsy.com/forums/f23/melatonin-11352/
http://www.coping-with-epilepsy.com/forums/f23/nocturnal-seizures-11904/
http://www.coping-with-epilepsy.com/forums/f23/melatonin-epilepsy-19855/

I think it depends a bit on your age, and the kinds of seizures you have. Quiet a few studies suggest that it helps kids with absence epilepsy, but with nocturnal/temporal seizures it may make things worse:

Melatonin has been reported to exhibit antiepileptic properties in clinical trials. But, recent animal studies have demonstrated that melatonin can have the opposite effect on brain function, depending on the dose and timing of melatonin administration. (You knew there had to be a “but.”)
In other words, while high pharmacological doses are able to decrease brain excitability and suppress seizures, smaller doses of melatonin (administered at night when melatonin levels in the brain are highest), can actually increase the excitability of neurons, making them more susceptible to seizure activity.
This process may be involved with certain forms of nocturnal epilepsy. Thus, seizures can be a side-effect of melatonin.
And the relatively high doses of melatonin required to inhibit experimental seizures can also induce cognitive and motor impairments and decreased body temperature.
In addition, melatonin has been shown to cause EEG abnormalities in patients with temporal lobe epilepsy and increase seizure activity in neurologically disabled children.
Click to expand...
(From http://epilepsytalk.com/2012/11/19/epilepsy-and-melatonin-yes-no-or-maybe-so/)

I've taken it in "SuperSnooze" to help me sleep with no adverse effects. But my seizure history is only generalized tonic-clonics, and they are controlled right now, so I'm probably less likely to have problems with it.
 
Sorry you're having so much trouble sleeping, AlohaBird.

It might be an idea to get yourself tested for sleep apnea.
 
Hmmm . . food for thought. I'm taking 1 mg a night to help wilth sleep while I'm dealing with post-benzo insomnia. I can't say that it's helping or hurting nighttime seizures, or really whether it's helping or hurting with sleep. Insomnia is bad most nights, good some nights, seizures come and go, with waves of other issues, no rhyme or reason. Maybe I'll try going off and see what happens. Thanks for the informative post.
 
epileric said:
Sorry you're having so much trouble sleeping, AlohaBird.

It might be an idea to get yourself tested for sleep apnea.
Click to expand...
If anything I am sleeping better without it and no more seizures or what I call "rude awakenings", being jolted out of sleep feeling like i am going into a seizure.

I have been tested for sleep apnea and don't have it but I've noticed that when one of those rude awakenings happens, I am often not breathing. If I can get enough neurons firing in a row to make a coherent thought and tell myself to BREATHE NOW! I can often stop the seizure from going full blown tonic-clonic. Perhaps this is what my dog is trying to tell me when he wakes me up if one is coming on. Breath! Darnit! If he gets to me in time it gives me a little while longer to get my head out of the fog of sleep and get my thoughts together.
 
Last edited:
lindsayschu2 said:
Hmmm . . food for thought. I'm taking 1 mg a night to help wilth sleep while I'm dealing with post-benzo insomnia. I can't say that it's helping or hurting nighttime seizures, or really whether it's helping or hurting with sleep. Insomnia is bad most nights, good some nights, seizures come and go, with waves of other issues, no rhyme or reason. Maybe I'll try going off and see what happens. Thanks for the informative post.
Click to expand...
The thing is if you already had seizures fairly often, you might not notice the difference. For me, after years of great seizure control, this was a major anomaly.

If you do try going off it, keep us posted on the results.
 
Nakamova, you are the best!

That quote above is the one I was looking for. I did the research into this in a bit of a post-ictal fog and couldn't locate it again.
Thank You!
 
Hi
Sorry to hear your drama wth Melatonin...sometimes we learn the hard way.

My Daughter takes Melatonin 4mg every night & it does help her settle to sleep, it also as you know is more natural than those other drugs that cause sedation.
In Oz (Australia) , there's the over the counter stuff (which doesnt seem as effective) & Melatonin..Circadin which is a prolonged release type.
The Neurologist did tell me some people say it does not work for them & some do swear by it.
Also, some pilots do take melatonin to help them get rid of jet lag & enable them to get back their usual sleep routine.

The advantage is that our body produces this hormone as it is.

I'm a believer in trying out the conventional & alternative ..if it does not work well you learn the hard way.

:)
 
Thanks AlohaBird. I've been considering melatonin sups for a while- as I have terrible insomnia from my meds.

I'm usually very wary of stuff like that, but it's become so bad over the years even after reading the previous threads on here about it I was tempted.

Your thread has reminded me not to.

Thank you :)
 
Blonde Angel said:
Also, some pilots do take melatonin to help them get rid of jet lag & enable them to get back their usual sleep routine.
Click to expand...

:ponder: I was married to a pilot for 20+ years and seems like his dr. did mention it at one time, but don't think it helped with his jet lag and sleep. But he had sleep apnea, too.

BlondeAngel said:
The advantage is that our body produces this hormone as it is.
Click to expand...

And we need to listen to our bodies.
 
Some people have no problem with melatonin. If you ARE going to try it, start with a very, very small dose to see how it makes you feel.
 
Nakamova said:
Some people have no problem with melatonin. If you ARE going to try it, start with a very, very small dose to see how it makes you feel.
Click to expand...
YES! And for heaven's sake don't do what I did which is to take a little, have even more disturbed sleep for a couple of nights and then decide to double the dosage because if a little is bad twice as much must be awesome, right?
 
Hi Cint
I totally agree..
Our body provides us with info that one should never ignore... & when one is in very chalkenging unfortunate position in having a child that is not verbal one has to problem solve issues to the best way possible.

:)
 
Just to update. Got the melatonin out of my system and I'm sleeping just fine again with no seizures or rude awakenings.

I don't think we have to be against any and all supplements. But where a hormone is involved, some extra care should be taken.
 
You must log in or register to reply here.
Back
Top Bottom