New Nocturnal Here and Whey Question...

[staugie]

Hi All,

I am new here and have been cruising around doing research before posting. This website is fantastic.

My story: I was diagnosed last May, at age 37, with Nocturnal Frontal Lobe Epilepsy. It had slowly been building for years and there is no history in my family. It took several Harvard doctors, funny enough, years to figure out what was happening. They finally observed me one night in the hospital. I had 9 "events" before they knocked me out with Ativan.

Since then, like with many of you, they have been experimenting with meds. Keppra didn't seem to work, but they kept me on it and added Lamictal. The meds seem to work for a couple of weeks, but then I have a break-through and they up the Lamictal. Darn vicious cycle.

I am still not sure what my triggers are (other than sleep), but am leaning towards diet/hormones. I would love to cut out the meds. I am trying the GFCF, as much as my will-power allows, cut out most preservatives, aspartame, MSG, read labels like a fiend and limit sugar.

Long story short, any advice from people with nocturnal or other seizures? Diet work? I take Ativan when it's a bad night and have been pairing that successfully with Benadryl lately, as I read some data about Histamines (interesting since I have a long history of allergies). Also read an intriguing, but dated study here about whey protein and it helping with sleep/seizures. Then I read it might be linked to MSG. There seems to be so much conflicting info out there. Would love to hear people's personal experiences!

Thanks for tolerating my long first post! Any tried and true advice is much appreciated!

 

[arnie]

Hello and welcome! What kind of seizures do you have? Partial seizures? Tonic-clonics? I sort of guess that they must be simple or complex partials because I can't imagine having 9 tonic-clonics before the docs knocked you out!
Meds can be a real pain to get adjusted, and they don't always give adequate seizure control, anyway. Side-effects are always a concern, too. I don't know a lot about the specific diet stuff. I know that the ketogenic diet is used mostly for children and is kind of complex. Like most of the other treatments it is nowhere near 100% effective. I have read that about 30% of people get pretty good control with it, another 30% have a reduction in seizures, and the rest of them get no help at all from it or discontinue it for some reason. Kind of like many of the treatments for epilepsy. Long-term effects of a high-fat diet for adults is not really known, either. I know that special diets can help with many disorders (my wife had severe asthma all her life until she pretty much cut out everything white from her diet. For probably 3 years now her asthma has been completely gone! It's fantastic!) but my impression is that what happens in our brains with epilepsy is influenced by a lot more than what we eat or don't eat. Unfortunately there is still so much that is not known about epilepsy.
My standard advice to people is to keep a journal of your seizures; when you have them, what you've been eating or drinking, what meds you're taking, any special stresses in your life, whether you're sick, whatever. You may find a trigger. Or not. In 33 years I have never found any triggers for my seizures, or any real cause for them. Lots of us don't.

I'm glad you're here. Keep in touch and let us know how things go.

Cheers!

 

[staugie]

Thanks, Arnie. A diary is a good idea. They have definitely gotten better (less often, less severe, thank god), but I have yet to see any clear pattern. You might be right that I may never find an exact one.

I will start keeping a detailed diary, as much as I can.

Also, I am not sure what kind they are. They haven't told me. All I know is that for almost all of them I have stayed mostly conscious while they happen. It's like a weird buzzing sensation that sometimes I feel I have to shake out. It is generally coupled with vertigo and hyperventilation. Sometimes, when I am not entirely conscious, it feels like I slipped gears in between waking and sleeping. I panic and feel like I am going to fall out of bed. My fiance and I got a king size bed that helped with that.

 

[Cint]

Hi Staugie and welcome,

Sounds like your seizures are SP/CP. I have CP but mine have occurred at all times of the day and some at night, too. The hormones could definitely be a reason for seizures, or at least part of the reason. Have you noticed any changes in seizures at 'that time'? Sometimes estrogen can provoke seizures and progesterone protects a women from them. Any other hormonal changes like thyroid, etc?

Usually Ativan is an add-on med for emergencies. I've used it when my Keppra or Topomax wasn't working. I once was told by my epileptologist not to take Benadryl as that can potentially bring on a seizure. For more info:

http://www.epilepsy.com/epilepsy/provoke_otc

Do over-the-counter (OTC) drugs affect seizures?

A few medicines that you pick up off the shelf at the drug store can potentially increase the frequency of seizures in people with epilepsy, or even cause first-time seizures. The most common one of this kind is probably diphenhydramine, the active ingredient in medications like Benadryl, which is used for colds, allergies, and to promote sleep. If you have epilepsy, you should talk to your doctor before you use it.

 

[arnie]

Here's a decent explanation of seizure types. I have both simple and complex partial seizures. I've had some tonic-clonics, but fortunately my medicine (lamictal) controls those!
http://en.wikipedia.org/wiki/Seizure_types

 

[Belinda5000]

There doesn't have to be epilepsy in your family for you to be diagnosed with epilepsy, it's called idiopathic seizures if there is no cause.
You can have more than one type of seizure and they can change your seizures.
Anyone can have nocturnal sz's. I've had plenty of them over the years.
It might take awhile to find a med or meds to control your sz's.

If I don't get enough sleep I will start having sz's, I can't stay up all night with out seizing.

 

[N Sperlo]

Hey staugie.

Welcome. The title caught me. I use Whey.
I have had simple and complex partial seizures as well as a couple tonic clonic.
I'm had some major issues with sleeping and they ended up being simple partials. The doctor was able to make them stop with medication and I sleep like a baby now.

I wanted to mention that in my case, the Whey has never appeared to effect any of my seizures weather they be nocturnal or during the day. You may be different, though. All our experiences with epilepsy are different.

 

[MAB]

Hey staugie.

Welcome. The title caught me. I use Whey.
I have had simple and complex partial seizures as well as a couple tonic clonic.
I'm had some major issues with sleeping and they ended up being simple partials. The doctor was able to make them stop with medication and I sleep like a baby now.

I wanted to mention that in my case, the Whey has never appeared to effect any of my seizures weather they be nocturnal or during the day. You may be different, though. All our experiences with epilepsy are different.

I usually have a whey drink each morning and it has no effect on my seizures. It has helped me lose 12 pounds though.

 

[staugie]

Thanks everyone. This has been very informative. I would definitely lean towards having mostly simple and complex partial seizures, with some tonic clonics when it was at its worst. (When I was sleeping and not conscious, my fiance almost called 911, seeing me convulsing and eyes rolling up into my head.)

I think hormones have something to do with it, but not in the traditional way. For example, I am mid-cycle, but had a bad week last week. However, I have always had issues with hormones, i.e. started puberty early, had years with a "pregnancy mask" on my face, though never pregnant (it provided for a nice tan, though!) and my mother had estrogen positive breast cancer, caught early, thank god.

Because of this, I have done some research on what foods promote estrogen in the body; there are quite a few. Soy, alcohol and, of course, hormone-infused meat/milk products are all bad. After reading labels, you start to realize soy is in everything. I also love thai food and sushi, so I wonder if that affects me. I try to cut out soy sauce when eating the latter. Also, I have realized I have been eating late meals lately due to work. I read somewhere not to eat within three hours of bedtime to promote better sleep (due to stimulation of the vagus nerve, which runs from the stomach to the brain). Last night, I obeyed it to a tee, and had the best night's sleep all week! No ativan required! However, I took a short nap around five, after a late afternoon snack, and woke up shaking/buzzing/hyperventilating. I really can't help but feel it all ties together.

Lack of sleep is a definite trigger for me. That too is a vicious cycle... lack of sleep, bad seizing... bad seizing, lack of sleep.

Great to hear about the whey! I have been looking for a high protein/low sugar breakfast. I also am wondering it will have beneficial trytophan/long-term sleep effects. Hopefully it will help with losing some pre-wedding pounds too!