[Marciab]

Hi All,

I had my first major seizure, lasting 2 hours, 11 days ago. I've been disabled with CFS/ME since 1990. So, I've had 21 years of nocturnal myoclonus, petite mals, ataxia, "wild and crazy" insomnia and what we think are TIAs. Actually, I've had mild petite mals / staring episides ever since I can remember.

I'll be seeing a neurologist this week. I gave up on neurologists years ago because all I ever heard was that my neurological problems were "normal" for CFS/ME. ... No one ever mentioned gluten or other possible triggers back then ...

Back in 2005, I eliminated gluten, diary, corn, soy and chemicals and that helped quite a bit. I started walking normally in September 2006. I'm currently on a Paleo / low carb / low oxalate diet and I've actually been feeling "human" for the first time in many years.

I'm fairly certain that gluten was associated with my nocturnal myoclonus (NM), insomnia and ataxia. I'm a celiac (DQ2) so neuro problems from gluten would explain my reaction to gluten.

I'm not sure what's behind the petite mals and TIAs (?) but these always start out with what feels like a sharp blood glucose drop. The petite mals happen throughout the day everyday. The TIAs (?) last for an hour and drinking OJ and eating a meal never stop these. I have to shut down (lay down, eyes closed and quiet) and wait these out.

I have some ideas on what may have caused my major seizure, but I'm going nuts trying to pin point these. I KNOW I was being cross contaminated with gluten at the time because I'd already pin pointed some pistachios that gave me NM and insomnia everytime I ate them ... and I suspect that So Delicious coconut milk and probiotic drink are cross contaminated too but I'm not going to try these again to find out. But, I'm so sensitive that it's really hard to tell where the gluten may be coming from.

Frankly, I'm so sensitive to so many things (MCS) though that I have no idea what's behind this ...

FWIW .. I've noticed that when I eat Maverick Ranch steak I can taste the plastic that it's wrapped in and not the meat. I started tasting cans over 10 years ago so I'm not surprised. Um, I started getting winded more easily when I started eating these steaks several months ago, so this is a good possibility.

When I think of all the plastic in my life, eliminating it will be a huge problem. I eat quite a bit of wild caught fish from BJ's that's shrink wrapped and can only drink bottled water.

So possibly gluten or plastic ... BUT, I had just started taking some allergy meds because it's springtime here in FL. Benadryl, Claritin and Nasalcrom. Both Benadryl and Claritin made me feel like I was floating ...

SOOOOOOOOOO ... this brings me to using Klonopin. I've tried to eliminate all possible causes but I haven't slept well since this happened. I couldn't sleep last night so I tried 100 mg of Theanine and 100 mg of 5HTP which have always worked before but was still jerking myself wide awake (nocturnal myoclonus) at 3 am ... Frustrated I took .5 mg of Klonopin and slept like a log. And I'm actually feeling awake today ...

So does this mean that I've reached the point that I need Klonopin to sleep ? Would taking this during the day stop my petite mals ? Are seizure disorders progressive, even if we eliminate known triggers ? If so, what dosage would be appropriate ? I was on Klonopin at night only for 16 years for my NM and gave it up 4 years ago. Maybe that wasn't such a good idea afterall ...

Since then if I've had NM or insomnia, Theanine and 5HTP solved these.

Thanks in advance for your replies ... and sorry this is so long ... Marcia

Ps .. I found this info the other day but I can't post a link here yet so you'll have to google this ...

it's ... coping - with - epilepsy dot com and the thread is " gluten-docs-seizures-good-news"

[MelodyL]

Originally Posted by Marciab

Hi All,

I had my first major seizure, lasting 2 hours, 11 days ago. I've been disabled with CFS/ME since 1990. So, I've had 21 years of nocturnal myoclonus, petite mals, ataxia, "wild and crazy" insomnia and what we think are TIAs. Actually, I've had mild petite mals / staring episides ever since I can remember.

I'll be seeing a neurologist this week. I gave up on neurologists years ago because all I ever heard was that my neurological problems were "normal" for CFS/ME. ... No one ever mentioned gluten or other possible triggers back then ...

Back in 2005, I eliminated gluten, diary, corn, soy and chemicals and that helped quite a bit. I started walking normally in September 2006. I'm currently on a Paleo / low carb / low oxalate diet and I've actually been feeling "human" for the first time in many years.

I'm fairly certain that gluten was associated with my nocturnal myoclonus (NM), insomnia and ataxia. I'm a celiac (DQ2) so neuro problems from gluten would explain my reaction to gluten.

I'm not sure what's behind the petite mals and TIAs (?) but these always start out with what feels like a sharp blood glucose drop. The petite mals happen throughout the day everyday. The TIAs (?) last for an hour and drinking OJ and eating a meal never stop these. I have to shut down (lay down, eyes closed and quiet) and wait these out.

I have some ideas on what may have caused my major seizure, but I'm going nuts trying to pin point these. I KNOW I was being cross contaminated with gluten at the time because I'd already pin pointed some pistachios that gave me NM and insomnia everytime I ate them ... and I suspect that So Delicious coconut milk and probiotic drink are cross contaminated too but I'm not going to try these again to find out. But, I'm so sensitive that it's really hard to tell where the gluten may be coming from.

Frankly, I'm so sensitive to so many things (MCS) though that I have no idea what's behind this ...

FWIW .. I've noticed that when I eat Maverick Ranch steak I can taste the plastic that it's wrapped in and not the meat. I started tasting cans over 10 years ago so I'm not surprised. Um, I started getting winded more easily when I started eating these steaks several months ago, so this is a good possibility.

When I think of all the plastic in my life, eliminating it will be a huge problem. I eat quite a bit of wild caught fish from BJ's that's shrink wrapped and can only drink bottled water.

So possibly gluten or plastic ... BUT, I had just started taking some allergy meds because it's springtime here in FL. Benadryl, Claritin and Nasalcrom ...

SOOOOOOOOOO ... this brings me to using Klonopin. I've tried to eliminate all possible causes but I haven't slept well since this happened. I couldn't sleep last night so I tried 100 mg of Theanine and 100 mg of 5HTP which have always worked before but was still jerking myself wide awake (nocturnal myoclonus) at 3 am ... Frustrated I took .5 mg and slept like a log.

So does this mean that I've reached the point that I need Klonopin to sleep ? Would taking this during the day would stop my petite mals ? Are seizure disorders progressive, even if we eliminate known triggers ? If so, what dosage would be appropriate ? I was on Klonopin at night only for 16 years for my NM and gave it up 4 years ago. Maybe that wasn't such a good idea afterall ...

Thanks in advance for your replies ... and sorry this is so long ... Marcia

Ps .. I found this info the other day but I can't post a link here yet so you'll have to google this ...

it's ... coping - with - epilepsy dot com and the thread is " gluten-docs-seizures-good-news"

Hi there again.

Wow, you have certainly been on a rollercoaster of a life haven't you? Many of my friends have epilepsy and seizure disorders. My grandfather was an epileptic (but the whole family kept that a big secret and I only found this out when I was an older adult). I have no idea why but it was all hush hush. Never understood that. When my mother told me I said "why doesn't anyone mention this?" and I got this stare from her as if to say "Are you crazy?"

I will never understand that part of my family . But this was 40 or so years ago.

And my Aunt Sally who is now a thriving 87 year old and completely deaf, well she has had a seizure disorder for YEARS.

I know for years she was on dilantin and when she has her seizures, she falls down and gets two black eyes. She does not get them very often.

I once asked her "when they tested you, did you get a diagnosis of epilepsy?" and she said "no," She said she has had every test under the sun and it was all negative.

Brains scans, etc.

They never found anything. She's not going to do anything now because she plays cards with her buddies every single night and she's enjoying her 87 years on this earth.

So I wish you well, and believe me, others will come along and give you their expertise.

Take care

Melody

[Marciab]

Originally Posted by MelodyL

Hi there again.

Wow, you have certainly been on a rollercoaster of a life haven't you? Many of my friends have epilepsy and seizure disorders. My grandfather was an epileptic (but the whole family kept that a big secret and I only found this out when I was an older adult). I have no idea why but it was all hush hush. Never understood that. When my mother told me I said "why doesn't anyone mention this?" and I got this stare from her as if to say "Are you crazy?"

I will never understand that part of my family . But this was 40 or so years ago.

And my Aunt Sally who is now a thriving 87 year old and completely deaf, well she has had a seizure disorder for YEARS.

I know for years she was on dilantin and when she has her seizures, she falls down and gets two black eyes. She does not get them very often.

I once asked her "when they tested you, did you get a diagnosis of epilepsy?" and she said "no," She said she has had every test under the sun and it was all negative.

Brains scans, etc.

They never found anything. She's not going to do anything now because she plays cards with her buddies every single night and she's enjoying her 87 years on this earth.

So I wish you well, and believe me, others will come along and give you their expertise.

Take care

Melody

Hi again,

I'm not surprised by your family's reaction to this. Good to hear that they're still functional ...

My family is in complete denial about the fact that I have a celiac gene (DQ2)and since they're my family they might too .. Several of them know that if they eat wheat, they'll get the runs, etc but chose to take medications instead.

I can't blame them really .. who wants to have an illness or go on a special diet ? Not me ..

I'm looking forward to hearing others experiences with this. If it turns out that I need to take a med I'm ok with it ... Actually, based on how good I feel today, this may help more than I thought ...

tc ... Marcia

[MelodyL]

Originally Posted by Marciab

Hi again,

I'm not surprised by your family's reaction to this. Good to hear that they're still functional ...

My family is in complete denial about the fact that I have a celiac gene (DQ2)and since they're my family they might too .. Several of them know that if they eat wheat, they'll get the runs, etc but chose to take medications instead.

I can't blame them really .. who wants to have an illness or go on a special diet ? Not me ..

I'm looking forward to hearing others experiences with this. If it turns out that I need to take a med I'm ok with it ... Actually, based on how good I feel today, this may help more than I thought ...

tc ... Marcia

Wow I guess denial hits a lot of people. They have been informed that you have the DQ2 gene and they don't want to be tested??

With all the gluten free products on the market, one does not have to have all those tummy aches all the time.

I don't have any of those problems thank goodness, but I know what I eat and where it comes from. I'm the type of person, if I see a plate of food that looks GREAT, tastes GREAT, smells GREAT, but..... If I even have a ghost of a chance that it might not agree with my body, I don't put it in my mouth.

I don't like getting heartburn, gas, tummy problems, the runs, constipation, etc. Life is too short to have to deal with all that nonsense.

I am very fortunate that I can eat all the greens I want, so I make bok choy every night. I saute it, I steam it, I make it all kinds of ways. I like various other greens. I like nice healthy salads, I grow my own sprouts. I eat grilled chicken, and I like my fish.

I have learned (and it took me a long time), not to eat anything processed or deep fried, or full of fat or oils.

I treat my body like the temple that it is. I'm a goddess and I treat my body like a goddess (have you stopped laughing yet???)

When I make my food I make sure there is plenty of colors on that dish. All bursting with good nutrition. So when it goes into my body, it does whatever it has to do, and the next day, it comes out the way it's supposed to come out. I drink plenty of water, and I don't do soda, no carbonation. Don't like the way I feel after drinking soda so I haven't had soda in over 5 years. Don't miss it.

I do however go to a particular website called truelemon.com

I purchase their Raspberry lemonade that has Stevia in it. This stuff is so good I haven't touched another beverage (other than plain old water) in over 2 years.

It's wonderful, refreshing and because I'm diabetic, well it does not spike anything in me. And it's natural. They crystallize the drink.

It's amazing.

I'm into sprouting. I discovered this 2 years ago and now I grow my own salads on my kitchen shelf. I grow broccoli, radish and fenugreek sprouts.

Love them.

I credit my father, who taught me to love salads.

Anyway, sorry to go off track about this stuff. But I will say one more thing. When I first learned about the benefits of sprouting, I read one really important thing. It's great for people with irritable bowel and other stomach related ailments. I don't do grains myself. I don't sprout wheatberries, or kamut or other grains like many of my sprouting friends do. I just do microgreens.

It's a really neat hobby that I found at my YOUNG age!!!

lol
Melody

[Porkette]

Hi Marciab,

Welcome to the forum. The long lasting seizure your discribed is known as a status seizure which means the seizure lasted for more than 15 min. this type of seizure can cause brain damage if they are not under control. Just like you I've had petit mal (absence) seizures for over 30 yrs. and at one time I took klonopin to help control my seizures but it wasn't strong enough for me, I do remember that it made me very tired. Lack of sleep, stress, chemical imbalances in the body, bright colors, loud sounds, drug and alcohol abuse along with genetics, or traumtic brain injury are the main things that trigger or start epilepsy. It can also happen from difficulty at birth. I saw many neurologist over the yrs. and I didn't get that much help until I started going to an Epilepsy Center and seeing a Epileptologist (Dr. specializing in epilepsy) You can usually find an Epilepsy Center at a University Hospital. After I saw my Epileptologist life got much better for me. I learned about taking vitamin B12 once a day to help calm the nerves, I had brain surgery to help reduce my seizures and I learned about the ketogenic diet which is a diet high in fat but low in carbs and starch foods that will help reduce or stop a persons seizures. You can also have a DNA test done to find out what meds would help you with your seizures and have the least side effect. If I may ask do you use a cell phone? If you do be very careful because this can cause more chemical and neurology problems which can lead to more severe seizures. I found this out from my Epileptologist because at my job a lot of staff were using cell phones and when I was near them it would cause me to go into a seizure. This is known as being cell phone sensitive and there's nothing that can be done about it. I wish you the best of luck and May God Bless You!

Sue

[Marciab]

Originally Posted by MelodyL

Wow I guess denial hits a lot of people. They have been informed that you have the DQ2 gene and they don't want to be tested??

With all the gluten free products on the market, one does not have to have all those tummy aches all the time.

I don't have any of those problems thank goodness, but I know what I eat and where it comes from. I'm the type of person, if I see a plate of food that looks GREAT, tastes GREAT, smells GREAT, but..... If I even have a ghost of a chance that it might not agree with my body, I don't put it in my mouth.

I don't like getting heartburn, gas, tummy problems, the runs, constipation, etc. Life is too short to have to deal with all that nonsense.

I am very fortunate that I can eat all the greens I want, so I make bok choy every night. I saute it, I steam it, I make it all kinds of ways. I like various other greens. I like nice healthy salads, I grow my own sprouts. I eat grilled chicken, and I like my fish.

I have learned (and it took me a long time), not to eat anything processed or deep fried, or full of fat or oils.

I treat my body like the temple that it is. I'm a goddess and I treat my body like a goddess (have you stopped laughing yet???)

When I make my food I make sure there is plenty of colors on that dish. All bursting with good nutrition. So when it goes into my body, it does whatever it has to do, and the next day, it comes out the way it's supposed to come out. I drink plenty of water, and I don't do soda, no carbonation. Don't like the way I feel after drinking soda so I haven't had soda in over 5 years. Don't miss it.

I do however go to a particular website called truelemon.com

I purchase their Raspberry lemonade that has Stevia in it. This stuff is so good I haven't touched another beverage (other than plain old water) in over 2 years.

It's wonderful, refreshing and because I'm diabetic, well it does not spike anything in me. And it's natural. They crystallize the drink.

It's amazing.

I'm into sprouting. I discovered this 2 years ago and now I grow my own salads on my kitchen shelf. I grow broccoli, radish and fenugreek sprouts.

Love them.

I credit my father, who taught me to love salads.

Anyway, sorry to go off track about this stuff. But I will say one more thing. When I first learned about the benefits of sprouting, I read one really important thing. It's great for people with irritable bowel and other stomach related ailments. I don't do grains myself. I don't sprout wheatberries, or kamut or other grains like many of my sprouting friends do. I just do microgreens.

It's a really neat hobby that I found at my YOUNG age!!!

lol
Melody

Hi Melody,

I'm impressed with your diet ... .. I'm on the Paleo / low carb / low oxalate diet out of neccessity.

I really can't blame anyone for not wanting to go on the GF diet. Especially anyone who's older and still functional. What's a little Imodium now and then if it means you can eat what you want and enjoy going out to eat with all your friends ? I'd give up my diet in a heartbeat IF I wasn't risking my life ... This seizure taught me that ...

Part of the problem could be that they can't see themselves as needing to go gf either. I've been very sick and disabled since 1990, so their impression of a celiac is me ... and they also see that the GF diet didn't cure my illness.

Granted, they are VERY careful about eating any gluten around me ... ... I try to be nice and allow it in my house but they won't bring it in ...

Hopefully, they'll learn more about this as time goes on and try it for whatever ailments they have ...

I was into sprouting but gave it up cause I kept getting mold in mine. Any ideas ? I'm thinking that I really needed to clean the containers a lot better ... I grow Kombucha and can tell you that this stuff is hard to kill ... Granted it's bacteria + yeast and not mold but I would imagine mold can be just as resilant.

I'm feeling a little shakey today so I'm trying to take it easy ... it's amazing how one HUGE seizure can scare the crap out of you ...

I started taking .5 mg of Klonopin for sleep two nights ago and it's working great ... but ... I wonder if it's making me feel this way ?

tc ... Marcia

[Marciab]

Originally Posted by Porkette

Hi Marciab,

Welcome to the forum. The long lasting seizure your discribed is known as a status seizure which means the seizure lasted for more than 15 min. this type of seizure can cause brain damage if they are not under control.

Just like you I've had petit mal (absence) seizures for over 30 yrs. and at one time I took klonopin to help control my seizures but it wasn't strong enough for me, I do remember that it made me very tired.

Lack of sleep, stress, chemical imbalances in the body, bright colors, loud sounds, drug and alcohol abuse along with genetics, or traumtic brain injury are the main things that trigger or start epilepsy. It can also happen from difficulty at birth.

I saw many neurologist over the yrs. and I didn't get that much help until I started going to an Epilepsy Center and seeing a Epileptologist (Dr. specializing in epilepsy) You can usually find an Epilepsy Center at a University Hospital.

After I saw my Epileptologist life got much better for me. I learned about taking vitamin B12 once a day to help calm the nerves, I had brain surgery to help reduce my seizures and I learned about the ketogenic diet which is a diet high in fat but low in carbs and starch foods that will help reduce or stop a persons seizures.

You can also have a DNA test done to find out what meds would help you with your seizures and have the least side effect.

If I may ask do you use a cell phone? If you do be very careful because this can cause more chemical and neurology problems which can lead to more severe seizures.

I found this out from my Epileptologist because at my job a lot of staff were using cell phones and when I was near them it would cause me to go into a seizure.

This is known as being cell phone sensitive and there's nothing that can be done about it. I wish you the best of luck and May God Bless You!

Sue

Hi Sue,

Thanks for replying ... I still have to look up status seizure. But the part about brain damage is concerning, of course. With all my neuro problems I'm sure that I already have some . Not that I wanted to add to it ...

That's interesting that you were taking Klonopin to control petite mals. I can't believe I didn't think of that myself ... duh ... or at least try taking Theanine.

I'm on .5 mg of Klonopin for sleep now but I'm not sure what the neurologist I see will recommend. I have to say though, I'm sleeping like a log and waking up feeling energized.

Funny you should mention difficulty at birth. I was born with the cord wrapped around my neck and my mother always attributed my neuro problems (blackouts and spaceyness) to this ... My background better fits that of someone who's been intolerant to gluten their whole life. And IMHO this seizure reflected just how sensitive I am ...

The day of that seizure I'd only had 4 hours of sleep due to allergies. I was also taking Claritin, Benadryl and Nasalcrom more regularly than I ever had. The Claritin and Benadryl make me feel loopy so normally I avoid those but I had to have them ... THe Nasalcrom didn't affect my brain and seemed to work the best. I've tried that again and seem to be ok ...

If I'm not satisfied with this doc I'll move on to seeing an specialist. Thanks for the tip ...

I'm on B12 . in fact, my numbers are over 1000 now. Have you heard of adenosyl B12 ? I think it's helping my muscles function better.

"I had brain surgery to help reduce my seizures" .. I may be asking you about this later so if you get the chance can you point me in the right direction here.

I'm on the Paleo diet but couldn't do the ketogenic ... bleh ... the oils killed me .. but I'm missing a gall bladder ... are you on the ketogenic diet ? FWIW .. I always thought this helped some people because it eliminated gluten. I can see how fats play a role in this too though. I take fish oil and eat plenty of other healthy fats but I'm paying more attention to this now.

I want to look at the DNA testing too ... you certainly have given me a lot of great info ... thanks again ...

I do use a cell phone. In fact I gave up my home phone about 4 years ago and just use one now ... I don't seem to react to it though.

thanks again ... have a great day ... Marcia

[MelodyL]

Originally Posted by Marciab

Hi Melody,

I'm impressed with your diet ... .. I'm on the Paleo / low carb / low oxalate diet out of neccessity.

I really can't blame anyone for not wanting to go on the GF diet. Especially anyone who's older and still functional. What's a little Imodium now and then if it means you can eat what you want and enjoy going out to eat with all your friends ? I'd give up my diet in a heartbeat IF I wasn't risking my life ... This seizure taught me that ...

Part of the problem could be that they can't see themselves as needing to go gf either. I've been very sick and disabled since 1990, so their impression of a celiac is me ... and they also see that the GF diet didn't cure my illness.

Granted, they are VERY careful about eating any gluten around me ... ... I try to be nice and allow it in my house but they won't bring it in ...

Hopefully, they'll learn more about this as time goes on and try it for whatever ailments they have ...

I was into sprouting but gave it up cause I kept getting mold in mine. Any ideas ? I'm thinking that I really needed to clean the containers a lot better ... I grow Kombucha and can tell you that this stuff is hard to kill ... Granted it's bacteria + yeast and not mold but I would imagine mold can be just as resilant.

I'm feeling a little shakey today so I'm trying to take it easy ... it's amazing how one HUGE seizure can scare the crap out of you ...

I started taking .5 mg of Klonopin for sleep two nights ago and it's working great ... but ... I wonder if it's making me feel this way ?

tc ... Marcia

Marcia:

Since you know about sprouting, take a look at one of my videos that I have on youtube. I was asked to make a short instructional video on how I soak and how I put in the seeds. I HAVE NEVER HAD MOLD PROBLEMS. Been doing this over 2 years now. I have other videos up and you can link to them after viewing this one (just in case you wish to get back into sprouting).

http://www.youtube.com/watch?v=2TJLkqG2-L8

This is very easy to do (especially using the tray system that I use). They stack one on top and take up NO space while they are sprouting, and will most certainly improve your health. Why not think about it.

Take care.

Melody

[Porkette]

Hi Marcia,

Just like you the cord was wrapped around my neck at birth and for yrs. they thought that's what caused my seizures but it wasn't until I had a wada test where they give a shot and half of your brain goes to sleep and they test you that I found out that what really caused my seizures was trauma when my mom was pregnant with me. My Grandfather passed away and the trauma of his death effected my mother causing to many brain cells to form on the right temporal lobe and they never went away this in turn caused scar tissue and started up the epilepsy when I was 10 yrs. old that was 39 yrs. ago. I would be more than happy to tell you about the surgery any time you want any info. feel free to ask. I'm on the ketogenic diet but I'm not following the guide for it each and every day. I have found that staying away from nutra sweet (aspartame) was one big help. I used to buy diet soda all the time and I noticed a big increase in my seizures when I spoke with my Epileptologist he told me that nutra sweet will cause more electrical activity in a persons brain which can trigger seizures for many people. Cell phones can do the same thing because your in the 900 megahertz frequency and some people end up having seizures, brain tumors, and it has been proven that using a cell phone will shrink a persons hippocampus and this is the area where a persons short term memory is as well as learning. I can see a lot of my family and friends repeating questions to me and they are very forgetful it's almost like having alzheimers. One thing I forgot to tell you to do is to get a calendar and write down each time you have a seizure. Write down the time of day/night the seizure happens along with a discription of the seizure. If you are still having your monthly cycle be sure to right down when you start and stop your cycle because hormones are changing which can trigger seizures for many women. This is known as cateminal seizures.
In regards to getting DNA tests done take my word a lot of Drs. will say they don't do this or they have never heard of it but that aren't telling you the truth because it's been done for yrs. The Drs. just want to make extra money perscribing meds for a person. I will tell you that use of cell phones can also change a persons DNA. To get more info. about seizures just type in Epilepsy Foundation of America or call this number if you live in the U.S.
1-800-322-1000 and you will reach the Epilepsy Foundation and they will send you info. in the mail. Here's wishing you well and May God Bless You!

Sue

[Marciab]

thanks Melody

I'm on the run but I'll look at this later ... I love the way FRESH sprouts taste ... TC ... Marcia

TADA ... this is post number 10 for me ... now I can post links ...