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Hi,

I've just joined this site today.
The forums are extremly helpful, and its so nice to learn there's great advice out there.
My experiences with my neuro haven't been very successful,as I usually get "I never heard of that before" when I begin to describe an experience to him.
Thankfully I've located a new neuro in Yale,CT that I 'll visit at the end of the month,
I had my first seizure back in August 2002,then the second in December of the same year.They were both grandmals.I was put on tegretol 800mg a day,which kept me seizure free untill april 2005,when i suffered another g.m. I then switched to 1,200mg trileptal per day.It did the trick up untill October the same year, where this time I just fainted, and jerked a little.It wasn't a full blown seizure like the previous ones. I currently take 1,800 trileptal, and I don't feel 100% safe on it.I feel sometimes a similar sensation that comes over me, prior to the other seizures.Then other weeks,I'm perfectly fine.I got my blood work done recently, and the med levels are stable and "normal".
Its great to be here everyone, thanks for listening..:)

Markus
 
Hi Marus ~ I'm glad to meet you. I also listened to the "I've never heard that before", and the "You are wrong", for many years. ~sigh~. Finally I found a neuro who listened to me.

I'm glad you found us and I hope you find a neuro too.
 
Hi Markus, welcome to the forum. :hello:
 
Re:

Hey Nancy,

Its wonderful to meet you... Thanks for your input.

Markus
 
:hello: Markus

Glad to have you here with us at CWE!
Enjoyed reading your post!
 
Hi Markus,
Glad that you decided to join us. My daughter, who is 15, has seizures. I have done quite a bit of research, and have found some great suggestions and information from this forum. I too have had my frustrations with neurologists, so it is invaluable to have the internet to learn more.
I hope we can offer you a safe spot to find the help that you need.
 
So strange..

Thankyou for the kind welcomes...

One of the famous "I 've never heard of that" from the neuro recently was related to a very uncommon type of seizure that I've also been experiencing.

Each G.M seizure I've had in the past has always been during, or just right after dinner. On all 4 occasions, I've been sitting at the dinner table, and next of all the lights go out, with little warning,then of course I hear the roaring of the sirens on the ambulance,etc, etc.

But the neuro seemingly confered this problem with the rest of his team, and nobody heard of it.
To this day, I still have such a strange feeling come over me, during or after dinner. Usually that "out of body",unreality type of spell comes right over me. It just lasts for a second or two intermittently,for about 30mins or so.
Its very scarey as I feel as though I'm going to hit the floor anytime.
I've done some tests where I'd just eat something cold,or light, and mixed foods, and it always seems to appear.

Sorry about this being so long, its the best way I can describe it..

Any thoughts perhaps?

Markus
 
Have you had your blood sugar checked? Maybe you should eat more frequent, smaller meals.

Are you tracking what you are eating with relation to the seizures?
 
Re:

Hi Bernard,

I recently had my "complete" blood work done, and everything came back normal.. I'm assuming the sugars are checked also, unless I must specify to get them tested?

I haven't really examined my food intake with regard to each meal, and how I feel. But I will pay closer attention.

Thanks Bernard.

Markus.
 
Perhaps something like this?

Reflex epilepsy is a condition in which seizures can be provoked habitually by an external stimulus or, less commonly, internal mental processes. Individuals with reflex epilepsy may have seizures exclusively in response to specific stimuli and not suffer spontaneous seizures; alternatively, reflex seizures may coexist with spontaneously occurring seizures. Reflex seizures are epileptic rather than psychogenic in nature, often manifesting epileptiform EEG changes. Reflex epilepsies may manifest as either focal-onset or primary generalized seizures.

Photosensitive epilepsy is the most common type of reflex epilepsy; seizures occur when an individual is exposed to visual stimuli, usually flashes of light of a particular frequency. In other reflex epilepsies, seizures may be provoked by auditory, olfactory, or vestibular stimuli. Reflex seizures also may occur in response to more elaborate stimuli or mental processes. Examples of these include reading epilepsy, musicogenic epilepsy, or seizures induced by cognitive processes, such as mathematical calculation.
Click to expand...
http://www.emedicine.com/neuro/topic687.htm

http://www.ilae-epilepsy.org/Visitors/Centre/ctf/reflex_seizures.html
The seizures induced by stimuli in sensitive patients are not different from spontaneous seizures in other subjects and thus reflex seizures are often classified according to the stimuli that trigger them rather than by the type of seizure that is triggered. Some earlier classifications and the publications on which they were based described “simple” and “complex” reflex epilepsies. The complex reflex epilepsies were characterized by seizures triggered by relatively elaborate stimuli whose specific pattern is the determining factor in seizure evocation.
* Visual stimuli
* Flickering light - color to be specified when possible
* Patterns
* Other visual stimuli
* Thinking
* Praxis
* Reading
* Somatosensory
* Proprioceptive
* Eating
* Music
* Hot water
* Startle
Click to expand...

Don't these doctors know how to use a search function on their computers? All I did was put in Seizure eating and there are many articles written up about it. Perhaps you could print out a few and discuss it with your doctor.
 
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Hi Markus: Glad you found the board and nice meeting you. Hope your new nuero will be alot more helpful than your old one. Looking forward to getting to know you. If you live in NYC why not go to NYU and see Dr Orrin Devinsky. He use to be my Dr. or Dr Labar at Cornell?

Riva
 
Re:

Hey Robinn,

Thanks for all the helpful tips.
I'm sure the info you provided would be well known to a neuro, not sure why it wasn't brought up.


Its nice to meet you RIva.. I'm so happy to be here.
Looking forward to keeping up to date here!!
 
Robinn,
how are feeling on Trileptal??
I getting a "tipsy" state, one hour after intake, depending on how much food i've consumed.
 
Hi Markus,
I am not the lucky one taking it. It is my 15 yr old daughter. This is her fourth med, so we are going very slow with it. We began with 75 mg, once a day and now are at 75 mg., twice a day. Her neuro wants it up to 150 at night this week, but I want to wait until she takes a very important test in figure skating. The neuro "says" she will be fine by the time she takes the test, but after watching her on the other drugs, it takes some time for it to kick in with her. It could cause her to have issues that would be dangerous. I don't see where another week will matter.

She has had no seizure in two weeks so I am hopeful. No major side effects yet but we are only half of the therapeutic dose. Some may fault me for not following what the Dr is asking, but I am the one that lives with her and monitors each change.
 
Markus said:
I'm sure the info you provided would be well known to a neuro, not sure why it wasn't brought up.
Click to expand...

You would be surprised at how often neuros don't know anything about neurofeedback, the latest diets, CBT and research on supplements like magnesium, omega 3 fatty acids, etc. It's a rare doc that knows everything IMO.
 
To me it is inexcusable in this day with the power of the internet.
Here is someone coming in claiming he has seizures when eating. Sounds different, but okay lets check. All I had to do was put in two words and a bunch of pages come up. That neuro could do the same and then either research more or claim it is all hogwash.
Really no excuse in my mind.
 
Markus said:
Robinn,
how are feeling on Trileptal??
I getting a "tipsy" state, one hour after intake, depending on how much food i've consumed.
Click to expand...

Trileptal is Tegretol with Oxygen.
(Robin is a caretaker with a person who
has Epilepsy).

I can't take Trileptal or Tegretol - I'm
allergic to BOTH!
:mad:

Tipsy is one of the reactions I get after
taking it, along with dozen other things,
from sound effects to head explosion.

If it's an AED and starts with a "T" ...
I ain't touching that pill!

:mad:

It might be that you're experiencing the
side effects:

TRILEPTAL - SIDE EFFECTS

Scroll half way down and you will see the
list of all the side effects of Trileptal.

Hope this helps

 
These occurances were brought up in the last meeting with the Neuo. He didn't shed much light on the subject, so therefore he's classed as having zero info on the topic. Its a pity, especially trying to reply on the professionals.

Many thanks for the link on that Med, its very helpful.
 
Re:

Thanks so much for that link!!!!
There is so much info on it..
I'll be reading it for a week!

Have a wonderful weekend everyone.:):)
 
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