Of to the Neurologist

[CQ:)]

I'm currently visiting my parents this weekend & earlier this afternoon a bit after 12:00pm I apparently had a small seizure in front of my Mother.

Both my Mum & I were in the lounge room trying to fix something on the VCR. One minute I remember sitting on a poufe with VCR remote in my hand the next thing I remember I wake up and I am laying on the couch. I went to get up because I wanted to go get lunch but my Mum came over and told me to just rest for a little while as I had taken a seizure.

My Mum said she was trying to fix the VCR with one of those universal TV/VCR remotes and she saw me sitting on the poufe with the VCR remote in my hand & my hand sticking out. My Mum had told me she would get the remote in a minute but I didn't answer and I think I was glaring into space and that is when she knew I was have one of my seizures. Mum said one of my hand started to shake a little bit so she tried to get me on the floor but couldn't so laid me down on the couch which was right next to the poufe. I don't remember any of that, I keep telling Mum that I didn't really take a seizure but did wonder why I was having a nap and had a headache (I know denial lol).

I don't usualy like to run to my Neurologist every time I have a seizure because my seizures are usualy only small auras or partials & I worry that I'm wasting the Neurologists time. I usualy wait until I have had a few seizures, if my seizures become regular or if I have different seizures. I took a seizure in June, July, September, October & now Today. That's just the ones I definately know about where I knew I did weird things or had people witness me have the seizures (either in person or via msn).

I have decided that it is about time I go see the Neurologist & see if he will increase my meds or just change them. I'm going to ring up the Neuro Tomorrow or Tuesday to see when I can get in.

 

[RobinN]

Sounds like a good plan CQ.
So glad that you were with your mum to take care of you.
Do you know what you want your neurologist to do? Are you all for an increase?
Are you trying any other alternatives? Is there any pattern? It appears like you are at one a month... just about.
Sorry for all the questions... it is just how my mind works these days.

 

[Bernard]

Sorry about the seizure CQ. I'm glad you weren't injured though.

 

[CQ:)]

Sounds like a good plan CQ.
So glad that you were with your mum to take care of you.
Do you know what you want your neurologist to do? Are you all for an increase?
Are you trying any other alternatives? Is there any pattern? It appears like you are at one a month... just about.
Sorry for all the questions... it is just how my mind works these days.

Hi Robin

I didn't mind that you asked the questions .

I guess it was good that my Mum was there because I had a witness but after I took the seizure she kept a good eye on me. I just wanted to lay down and have a sleep but my Mum wanted me to watch DVDs with her. I never did get my nap & the tiredness went away.

I have a really good Neuro who is caring & worries about me especially when I have taken my small seizures in the shower. I have only been on Topamax since March last year & have been on Tegretol since I started taking seizures in 2002. I am just guessing that the neuro will increase my Topamax but he could surprise me and get me to have an EEG or change my AEDs. I don't mind if my meds have to be increased because I seem to cope with them OK.

At this stage the seizure I am sure of the cause of is the one I took in July, I am sure it was stress as my dog was booked in to be put down 9 days after I took the seizure & I was stressed about that.
My family was worried that I was using the computer too much and it was the computer causing me to have seizures as the ones I took in June & July were both on the computer. After I took the seizure in July my Dad bought me a glare screen for my monitor & I have since bought myself a LCD computer monitor. The one I took in September was while walking down the street. The one I took in October I was talking to my Mum on the phone.
I have looked to see if my monthlys fall around the same time that I take a seizure but I don't think they do.

At this stage I haven't tried any other methods to control my seizures other then the AEDs I am on.

 

[CQ:)]

I have taken grandmal seizures before but very rarely (usualy partial seizures).
Mum said my arm was shaking a little bit Yesterday which to my knowledge is the 1st time my arm has shaken when I have taken a smaller seizure.
Mum seems to think I took a paedimal seizure, wondering if my Mum is right or do you think it was just another partial?

 

[RobinN]

One more question... if that sweet pup of yours were having seizures, would you have tried diet with him/her?
You had 22 years without, what was working?
Oops... guess that was two questions.

 

[speber]

CQ, sorry to hear about the seizures! My :twocents: would be to:

• Get your stress level as low as possible
• Consider attempting an alternative treatment (such as diets Robin mentioned) as a supplement on as simple a level as you can for starters.
• Get comfortable with it (the alternative treatment), and learn how to incorporate it well into your lifestyle so you won't 'fall off the wagon'.
• Document your results fully so your doctor can be kept fully informed and react properly as well.

The first and last ones are the biggest ones IMHO...if you are TOO stressed out there isn't much anything can do for you and if your doctor isn't well informed of all your seizure activity he doesn't really know the whole story, right?

Good Luck!
:rock:

 

[kris1230]

Sorry to hear about you're seizure CQ. Make sure you update your neurologist about you're seizure, it's important so that he/she can help you the best they can. I'm also one that likes to pass up telling my neurologist about a seizure here or there and he's assured me that it's important he knows and that I'm not wasting his time. Do you keep a seizure diary?

 

[CQ:)]

One more question... if that sweet pup of yours were having seizures, would you have tried diet with him/her?
You had 22 years without, what was working?
Oops... guess that was two questions.

LOL @ asking me 2 questions, you can ask me as many questions as you like Robin
If my dog was taking seizures I would've done anything I could to try to keep him happy and comfortable while he had the epilepsy & would have tried anything the vet suggested as long as I could afford it. When my dog was alive & during the 3 years that he had the diabetes both my parents and myself used to have people tell us that we were crazy that we were spending money on a diabetic dog and giving him insulin and should just have him put down. This used to always upset me because to me he was part of the family & apart from his diabetes he was healthy and he was happy, he didn't mind haveing the insulin & worked around being blind (my parents dog helped him).

Nobody knows why I went 22 years without taking seizures, I hadn't changed my diet or done anything dramatic to make me have a seizure.

When my Neurologist changed my meds from Lamictal to Topamax he told me that one of the side effects of Topamax was that I won't feel as hungry & might lose weight. Before I went on Topamax I was a real big eater but since being on Topamax my appetite isn't as big as it was but I still eat normal food. I usualy eat what I feel like on the day whether it be a sandwich or KFC (which I don't have to often now).

 

[CQ:)]

CQ, sorry to hear about the seizures! My :twocents: would be to:

• Get your stress level as low as possible
• Consider attempting an alternative treatment (such as diets Robin mentioned) as a supplement on as simple a level as you can for starters.
• Get comfortable with it (the alternative treatment), and learn how to incorporate it well into your lifestyle so you won't 'fall off the wagon'.
• Document your results fully so your doctor can be kept fully informed and react properly as well.

The first and last ones are the biggest ones IMHO...if you are TOO stressed out there isn't much anything can do for you and if your doctor isn't well informed of all your seizure activity he doesn't really know the whole story, right?

Good Luck!
:rock:

Hi Speber

I have always had a problem with stress so I try to keep my stress level low.

A couple of years ago I was working in a job that was making me feel stressed so therefore I would end up having seizures. At the moment I don't think there is any stress happening in my life.

 

[CQ:)]

Sorry to hear about you're seizure CQ. Make sure you update your neurologist about you're seizure, it's important so that he/she can help you the best they can. I'm also one that likes to pass up telling my neurologist about a seizure here or there and he's assured me that it's important he knows and that I'm not wasting his time. Do you keep a seizure diary?

Hi Kris

I rang my Neurologist this morning and I have an appt with him on Monday 10 December @ 3:45pm.

I have an exercise book where I write down all the seizures (or funny turns) that I know I definatly took. When I see my Neurologist I give him a print out copy of my seizures which I have typed up on the computer, this way he can read through it at his own pace and I don't have to remember everything that happened from memory.

My Mum has always come into my Neurologist appts with me because she has witnessed a lot of my seizures so she can tell the Neuro what I have done (like the one I took Yesterday which I have no memory of) plus she likes to know what's going on. My Neuro doesn't mind that Mum comes into the appts, since I have been going to him for 5 years he has me sussed out and knows I don't always tell him about all the seizures so sometimes asks me if I've told him absolutely everything LOL. I always end up saying well I may have had another seizure but not sure.

 

[RobinN]

I was a real big eater but since being on Topamax my appetite isn't as big as it was but I still eat normal food. I usualy eat what I feel like on the day whether it be a sandwich or KFC (which I don't have to often now).

I guess I am not communicating correctly. That is why I dislike that word. Diet so many times means to people that you must be using it to suggest losing weight. I believe when we use it here most of the time it is pertaining to nutritional foods.

Are you aware that many food ingredients have been connected to seizures?
I don't mean to beat this into the ground, but for someone that has remained seizure free for 22 years, it seems like you might be a good candidate to try changing the types of food you eat. Sorry but KFC is certainly not on the list. Do you know it has been rated as possibly one of the highest in MSG?

Would you consider going gluten free, and casein free, and eliminating unnessary sugars, and MSG related products from your diet? I think it takes a good year to heal the intestines and the brain. Are you up for a challenge?

 

[CQ:)]

I guess I am not communicating correctly. That is why I dislike that word. Diet so many times means to people that you must be using it to suggest losing weight. I believe when we use it here most of the time it is pertaining to nutritional foods.

Are you aware that many food ingredients have been connected to seizures?
I don't mean to beat this into the ground, but for someone that has remained seizure free for 22 years, it seems like you might be a good candidate to try changing the types of food you eat. Sorry but KFC is certainly not on the list. Do you know it has been rated as possibly one of the highest in MSG?

Would you consider going gluten free, and casein free, and eliminating unnessary sugars, and MSG related products from your diet? I think it takes a good year to heal the intestines and the brain. Are you up for a challenge?

I actualy don't eat KFC all the time, maybe once every 3-4 weeks for lunch (sorry if this contradicts my last post). The main reason I used KFC as an example was because since I am from Australia & alot of our foods are different to the American food so I thought it was probably the main food you would recognise.

Can you please tell me what you mean by casein free?

I will admit I have never looked at my diet and what has MSG in it & what hasn't because that stuff usualy goes over my head but I guess I'm up for a challenge :tup:

 

[brain]

I have taken grandmal seizures before but very rarely (usualy partial seizures).
Mum said my arm was shaking a little bit Yesterday which to my knowledge is the 1st time my arm has shaken when I have taken a smaller seizure.
Mum seems to think I took a paedimal seizure, wondering if my Mum is right or do you think it was just another partial?

That's what I've been experiencing lately,
Simple Partials on my right side; right arm
and right leg.

It's too weird.

My right hand and right foot would shake and
then zoooooooooooom - my entire right side
would flare up (generalize) in a flash so quickly
all the way up to my head where it flops to the
right.

But just before it starts, I get a very quick aura
all of a sudden, really depressed, I panic, I have
to go to the bathroom (but don't really need to
go), and then boom it hits me. And like a flash,
it's all over. That's the fastest seizure I've ever
had. But it takes me hours to sleep it off, because
if I don't, I'm all out of sync and disorientated or
really irritated.

This is the first time in my life I've witnessed my
own seizures. And it's freaked me out. Too eerie.
I've already talked with my Doctors, and it's already
been witnessed by Medical Personnel.

*sigh*

Enough already. (This is a result from the June
2007 Cop Pursuit, where Steve & I were the
2nd and final victims from the fleeing felon which
destroyed and totaled our car, and both of us
were injured.)

 

[Bernard]

... that stuff usualy goes over my head ...

 

[RobinN]

CQ - I doubt I can spill the beans all in one post, but hopefully I can give you something to chew on.

Casein comes from cow's milk products, and is largely absent in goat's milk.
Along with gluten grains (wheat, barley and rye), soy and corn, they cause the distruction of the villi (which are like little fingers in our intestine). These villi absorb the nutrients that our brain needs to function. If they are detroyed then the very important vitamins and minerals that our brain needs to function is lost.

The one thing about casein that caught my eye, is that this is used to make adhesives (glues). We have a very popular glue here that is used in most schools and it has a cow on the package. I did some research and the company has since been split into two separate companies, but glue products from one and milk and cheese products at the other. Simple stomached animals are not capable of breaking down the glues. Cow milk is the number one "gut" damaging food. Wheat is number two.

Gluten grain, cow's milk, Soy, Corn are the primary allergens. All other foods are secondary. After the intestine is damaged the other foods can "leak" into the blood stream that starts an immune reaction in the body. (That's for another lesson)

Now to jump a bit....

Glutamic acid (MSG.... think any manufactured flavoring, salad dressing, soup flavoring) is a known trigger of seizures. It is an additive in food products along with apartic acid (aspartame...think sodas, and sweets). Excessive glutamate can lead to overstimulation of neurons (e.g. seizures, reduced pain threshold, sleep disorders, and emotional disturbances) or neuronal death (e.g. ALS).

You might be eating differently than some folks do here in the U.S. but I can guarantee that you are most likely getting these ingredients in your food products. They are hidden in about 40 different names. It can take weeks if not months for the intestines to heal, and then even longer to allow for the brain to heal. I believe you owe it to yourself to try this.

I also would suggest that you read this page, as it explains it better than I do.
http://www.dogtorj.com/
I have had to reread it about a dozen times though. I take one paragraph at a time to understand what he is saying, as many of the concepts were new to me. It has been worth the time to understand how the process works.

Ask questions because there is no reason to stay in the dark about your health.

 

[CQ:)]

That's what I've been experiencing lately,
Simple Partials on my right side; right arm
and right leg.

It's too weird.

My right hand and right foot would shake and
then zoooooooooooom - my entire right side
would flare up (generalize) in a flash so quickly
all the way up to my head where it flops to the
right.

But just before it starts, I get a very quick aura
all of a sudden, really depressed, I panic, I have
to go to the bathroom (but don't really need to
go), and then boom it hits me. And like a flash,
it's all over. That's the fastest seizure I've ever
had. But it takes me hours to sleep it off, because
if I don't, I'm all out of sync and disorientated or
really irritated.

This is the first time in my life I've witnessed my
own seizures. And it's freaked me out. Too eerie.
I've already talked with my Doctors, and it's already
been witnessed by Medical Personnel.

*sigh*

Enough already. (This is a result from the June
2007 Cop Pursuit, where Steve & I were the
2nd and final victims from the fleeing felon which
destroyed and totaled our car, and both of us
were injured.)

My seizures have usualy been small and usualy started of with the funny feeling in the head or the really strange dream.
In the beginning once the feeling or dream had gone away I thought the seizure had finished but then I realised I was still in the seizure for a coupl of minutes. From coming on this site I've started to realise that the funny feeling or strange dream is the aura & the rest of the seizure is a partial.

Before my Mum saw me sitting there with the remote I had the strange dream (guess that was the aura). Next thing I know I was waking up on the couch.

Because my hand only shook a little bit is it possible that I probably still had a partial seizure then?

 

[CQ:)]

CQ - I doubt I can spill the beans all in one post, but hopefully I can give you something to chew on.

Casein comes from cow's milk products, and is largely absent in goat's milk.
Along with gluten grains (wheat, barley and rye), soy and corn, they cause the distruction of the villi (which are like little fingers in our intestine). These villi absorb the nutrients that our brain needs to function. If they are detroyed then the very important vitamins and minerals that our brain needs to function is lost.

The one thing about casein that caught my eye, is that this is used to make adhesives (glues). We have a very popular glue here that is used in most schools and it has a cow on the package. I did some research and the company has since been split into two separate companies, but glue products from one and milk and cheese products at the other. Simple stomached animals are not capable of breaking down the glues. Cow milk is the number one "gut" damaging food. Wheat is number two.

Gluten grain, cow's milk, Soy, Corn are the primary allergens. All other foods are secondary. After the intestine is damaged the other foods can "leak" into the blood stream that starts an immune reaction in the body. (That's for another lesson)

Now to jump a bit....

Glutamic acid (MSG.... think any manufactured flavoring, salad dressing, soup flavoring) is a known trigger of seizures. It is an additive in food products along with apartic acid (aspartame...think sodas, and sweets). Excessive glutamate can lead to overstimulation of neurons (e.g. seizures, reduced pain threshold, sleep disorders, and emotional disturbances) or neuronal death (e.g. ALS).

You might be eating differently than some folks do here in the U.S. but I can guarantee that you are most likely getting these ingredients in your food products. They are hidden in about 40 different names. It can take weeks if not months for the intestines to heal, and then even longer to allow for the brain to heal. I believe you owe it to yourself to try this.

I also would suggest that you read this page, as it explains it better than I do.
http://www.dogtorj.com/
I have had to reread it about a dozen times though. I take one paragraph at a time to understand what he is saying, as many of the concepts were new to me. It has been worth the time to understand how the process works.

Ask questions because there is no reason to stay in the dark about your health.

Hi Robin

Thankyou for the information and the link.

Everything that you told me about cutting out sugars, going Gluton free & MSG free finaly sunk into my silly head late last night.

When you have been suggesting about changing my diet do you mean the GARD diet? I have seen the GARD diet mentioned on this forum alot but haven't looked into it yet.

Will I need to speak to my neurologist about the diet
1st or do I just start the diet myself?

Thanks again for everything

 

[brain]

This might help you understand it better

My seizures have usualy been small and usualy started of with the funny feeling in the head or the really strange dream.
In the beginning once the feeling or dream had gone away I thought the seizure had finished but then I realised I was still in the seizure for a coupl of minutes. From coming on this site I've started to realise that the funny feeling or strange dream is the aura & the rest of the seizure is a partial.

Before my Mum saw me sitting there with the remote I had the strange dream (guess that was the aura). Next thing I know I was waking up on the couch.

Because my hand only shook a little bit is it possible that I probably still had a partial seizure then?

I created a thread (I shortened it)
Read it - this might help you understand it more:

SIMPLE PARTIALS & COMPLEX PARTIALS

 

[Bernard]

Will I need to speak to my neurologist about the diet 1st or do I just start the diet myself?

The GARD diet has not been studied in a medical/scientific manner and your neuro likely won't know anything about it. If your neuro is keeping up with latest information, s/he should know about the LGIT and modified atkins diets.

The GARD diet is easy enough to try on your own should you be so inclined, but I would discuss it with the doc to at least let them know what you are doing - and keep a journal to track what you are doing and any changes that occur.