Aloha from Molokai

[AlohaBird]

Hello Everyone,

I am so glad to have found this forum. I stumbled across it while researching the benefits of moringa which grows here on Molokai. Someone at the local farmers market is selling the stuff and I thought i would give it a try. I'll keep you posted on how that turns out.

So far I've been able to reduce my meds by half by going on a ketogenic diet while still maintaining full seizure control. :woot: The only times I slip up are when I do something stupid like not get enough sleep or eat/drink too much sugar or caffeine.

Does anyone else have seizures only when they sleep? That's the kind I have.

Robin

 

[Bernard]

Aloha Robin, welcome to the forum. :hello:

Sadly, the Moringa seeds which we've sprouted over here (south Texas) haven't managed to grow very much before being eaten by local pests. Still trying to get a tree growing past 1' tall or so.

 

[AlohaBird]

Thank you, Bernard

This is a wonderful forum with so many helpful supportive people. I wish I had had something like this when my seizures first started.

I think the Moringa tree needs a little more tropical climate to flourish. Texas may be a bit too arid. It grows like crazy over here.

I've only been on the Moringa capsules for a few days so too soon to say anything definitive about seizure control but I do notice that I am sleeping really soundly which is especially important to someone with nocturnal seizures.

 

[Fedup]

AlohaBird

Welcome to CWE you will meet good people here like Bernard who set up this site, sit back and get used to the place and ask all the questions you want, people will try to help.

 

[AlohaBird]

Thank you, Fedup

Has there ever been a thread or sub-forum here just for people with exclusively nocturnal seizures? These seem to be a different kettle of fish in some ways from many other seizure disorders.

 

[Fedup]

AlohaBird

Exclusively for nocturnal, no and I will be honest I hope that never happens. The main difference is when it happens, if you take the time away there is no difference. Mind you in saying that every seizure is different for everybody even if they are Tonic Clonic, I myself have Grand Mal and they are nocturnal, I have had them all my life probably like you have had them. But my Grand Mal is different from yours, yes there may be similarities but they are not the exact same. I learn a lot from others here talking about there seizures, some nocturnal, some not but the thing is the seizures not the time they happen. Sorry but that is my thinking.

 

[AlohaBird]

Good points and I agree that I can learn from people who have seizures any time of day or night.

That said, there are a few things that people who have nocturnal seizures have to deal with that others don't and a few things that aren't as much of a problem.
E.g. I don't have to worry so much about getting hurt (unless of course I fall off my bed).

On the other hand I have had to deal with the hassle of getting my driving license back even though there is zero chance I will have a seizure behind the wheel.
Also, being afraid to go to sleep was one of my biggest problems when I first started having seizures. I did all kinds of stupid things to deal with this including self medicating with alcohol to go to sleep and then lots of coffee to wake up after a not so restful night.
I don't know about other people with nocturnal seizures but I sometimes get pre-seizure auras that will wake me up with a violent start. Several of those in a night can make for some serious sleep deprivation.

These are the kinds of things I would like to swap stories about and learn from with other people who have nocturnal seizures.

 

[Fedup]

AlohaBird

I can see what you mean, tell me one I have to deal with that you do not have to deal with or the other way around, as for hurting yourself I could not disagree more with you. I have split my head, split my forehead open, tore ligaments and muscles, tore my shoulder and more. Do not forget I have nocturnal seizures

I drive and I am married so you see nocturnal seizures do differ among us. The part about zero chance of a seizure behind the wheel is wrong and I am living proof of that. There is always that fear of going to sleep for everybody, the fear that you do not know what is going to happen to you is one of the worst but then again there are a lot of people without E who have the same fear and even people with E who do not have nocturnal seizures.

We all did stupid things, even me, I do not think drinking a bottle of whiskey helps when you take medication but I learned the hard way. The restless nights with the nightmares do not help. I do not get the pre-seizure auras but I know others that do, I do not get to wake up to a violent start, I get to wake up when its over gasping for breath and looking to see what damage I have done this time.

We can swap stories about nocturnal seizures anytime you like, that is no problem.

 

[AlohaBird]

Yikes! Torn ligaments? The worst I get is some really sore cramped up muscles. Sometimes I wake up and they are still in spasm, like a leg cramp that will not go away. I guess I should consider myself lucky.

I have had seizures for 30 years and never had one while awake. Are there people who have both?

Perhaps because mine are exclusively nocturnal, the fear became so concentrated all around going to sleep so I compensated by staying up later and later (and partying harder) in order to put off the inevitable.

Of course, I didn't realize it at the time that depriving myself of sleep was only compounding the problem.

 

[Fedup]

AlohaBird

You should try to use a knife when you have a torn ligament, not fun. I get the cramped muscles as well. I presume there are people who have both types of seizures. I have had seizures for 50 years now. I think you mean I should consider myself lucky and I am.

Mine are exclusively nocturnal as well but that does not mean it cannot happen that you have one during the day or something. I think my seizures may be changing as I get older. I did the partying part and lack of sleep, playing poker till the next morning and all that, your right it does not help.

I do not care what kind of seizure you have, you cannot say one is worse than the other or that they are the same and I have meet enough doctors who thought that. They are stupid.

 

[AlohaBird]

Mine seem to be changing as I get older too. (That could be a thread unto itself). How are yours changing?

At least my change is for the better. I think the hormonal changes of menopause have helped. I know that a lot of children grow out of their epilepsy as they hit puberty. Mine aren't gone but they are less frequent and they seem to be less intense as well. I am sometimes able to maintain consciousness throughout the whole thing which is worth it because my brain feels less foggy the next day.

I guess there are as many types of epilepsy as there are people who have it. It is interesting to learn about all of them.

 

[Fedup]

AlohaBird

Yours are changing as well, that is good, although you seem to be doing better than me at the moment. Mine seem to be getting more intense and there was a time when I could say November to March were the worst months for me, not so much any more.

You maintain consciousness, is that hard on you. Which would you prefer the consciousness or not remembering. The brain is kind of foggy with me as well but its not as bad as it was and a few hours sleep and I can get up but my body does be so warm I go outside even in the cold just to feel the air I do not notice the cold.

 

[AlohaBird]

I'm sorry your changes are not positive ones. I too find the winter months to be the hardest. Moving to Hawaii seems to have been a really positive development in my seizure control. I think the Vitamin D is important.

Going unconscious is easier in the short run, not having to deal with the pain and the thrashing around. But I find, in the long run, I am better off holding on to consciousness if I can. I have less oatmeal brains and also less chance of munching on my tongue that way. As I'm sure you know, a sore tongue can last a long time and really get in the way of everything important in life.

 

[Nakamova]

Hey AlohaBird, just wanted to say howdy and welcome!

Let us know how the Moringa works for you. I've also found that magnesium helps me sleep (parituclarly in the SuperSnooze supplement, so perhaps worth a try if sleep issues persist. I've had both nocturnal and daytime tonic-clonics, (though they've been controlled by Lamictal the last 6 years.).

Best,
Nakamova

 

[AlohaBird]

Thanks, Nakamova.

I've had trouble in the past with trying to supplement magnesium and ending up with digestive issues. I found one that is a trans dermal that you spray on that seems to be working really well. It's the Life-flo brand sold on Amazon.

 

[Nakamova]

Yes, some Mg brands are easier on the digestion than others. I like magnesium taurate and magnesium citrate, both of which have high aborption rates and are less likely to mess with your digestion.

 

[MMRocks]

Did you know you have to have a certain level of potassium for magnesium to work? And that you have to have magnesium for vitamin D to be made and distributed?

AlohaBird do you find that living in Hawaii helps your seizures? If yes, do you think it's because of the climate, ocean, or low human population?

 

[AlohaBird]

Yes, all of those have to be working together which is why I like getting my supplements in the forms of real foods like this moringa powder and such instead of synthetic tablets.
My favorite potassium supplement is picking a banana off one of the trees in my yard.

Living in Hawaii is paradise for me and it seems to be helping my seizures too. I live on a very sparsely populated island with clean air, clean mineral rich water which filters down through all that lovely volcanic rock before becoming out water supply. All the produce is grown in that rich volcanic soil and tastes like there are nutrients popping out all over the place. Then the grass fed animals also take in all those nutrients. And there is wild caught seafood everywhere and wild game meats like venison. So I am eating really well. And it is just the ultimate low stress culture. If something doesn't get done today, no worries, it will get done tomorrow or the next day and it doesn't really matter. There are no freeways. Heck, there aren't even any stop lights on Molokai.
The other great thing given that I have nocturnal seizures is that getting to sleep is really easy here since it gets very quiet and very dark at night.
And the world's largest Epsom Salt bath a.k.a. the Pacific Ocean is right there whenever I want. Vitamin D treatments are free most every day just by walking around outside.

It would be a really interesting experiment to move a group of people with epilepsy to this environment and see how many improved.