Newbie just popping in to say Hi and ask few questions....

[Lil Ballerina]

Hey all, my name's Gil. Or Lil ballerina as my friends call me. I am 25 soon to be 26. I have been feeling pretty alone on the hole seizure front as i had no laptop until santa came....so I'm hoping i can make some friends here and get some advice.
I've been having seizures for the past 5years but only in the last year and half have they become really frequent and severe. I was diagnosed with epilepsy xmas last year. I was put on carbamazepine at a fairly low dose 600mg per day but over the last few months its been incresed to 1000mg per day. since its been increased the side effects have been dreadful. I feel like i'm constantly dizzy, floating and confused. I saw my GP this morning and she changed my medication to Epilim.
I am quite worried though as a lot of people say it causes weight gain....i have been anorexic for the past 13years and I'm fed by Tube.
I'm now trying to weigh up do i take the medication and it makes me gain weight and freak out or not take it and risk seizures......the answer may seem simple to you. But Im 75lbs and terrified to gain weight.
sorry if this is a ramble Im really upset at the moment.

take care
Gil xox

 

[joan]

Morning Gil** Hang in there. You will find good company, compassionate ears and information here. Welcome *

My son (19) not anorexic but has lost alot of weight since starting lamictal 4 years ago. We are addressing it but have found he has sensory processing disorders which make him not realize hes hungry and the meds dont help. It also complicates him going to sleep.

I find I can only eat when Im happy and have company. I hate to eat alone and I cant eat if Im upset. I hope you feel better.


joan*

 

[Lil Ballerina]

Morning Gil** Hang in there. You will find good company, compassionate ears and information here. Welcome *

My son (19) not anorexic but has lost alot of weight since starting lamictal 4 years ago. We are addressing it but have found he has sensory processing disorders which make him not realize hes hungry and the meds dont help. It also complicates him going to sleep.

I find I can only eat when Im happy and have company. I hate to eat alone and I cant eat if Im upset. I hope you feel better.


joan*

Hi Joan,
I have anorexia nervosa, so i am Eating Disordered but not due to my epilepsy. They think thats what triggered my epilepsy as my lowest weight was 54lbs and i had around 15seizures a day.

Im glad ive finally found a place where i can talk to people noone seems to understand unless they or someone close are going thru it.

gill xox

 

[joan]

I have a hard time holding weight. But I dont fear gaining weight either. I have been hospitalized twice due to my low weight. But I also know when Im being bad and how to fix it. I am not anorexic. Ive always considered mine, nervous energy. Im sorry youre not feeling well and I do hope you do better. Do you have folks to talk things out with? Im not sure what I can say to help but know you are a special person with a special place in the world. That you are important and count. That your feelings matter. That every day a new day with a chance for change.
hang in there *
joan*

 

[Kansas Educator]

I have been on Depakote (Epilim) for a couple months now and, if it's any consolation, haven't gained weight. Just focus on getting and staying healthy and the rest will follow. Good luck!

 

[Lil Ballerina]

Thanks I just heard from a few people that epilim makes you gain weight, but i just called my GP there and she said that because i dont take anything orally (not by choice just because my body cant tolorate solids anymore) that weight gain is unlikely, I suppose i would much rather be seizure free than worry about weight gain. I can't help but worry though its the joys of having an eating disorder that make me panic.
Is Epilim a form of depakote? I looked it up and Epilim is sodium valporate and Depakote is valproate semisodium a mood staboliser for BiPolar Disorder.
would i have best sticking out the Carbamazepine?
Sorry for all the questions, i am juct confused by the anti-epileptics and mood stabilisers.
gil xox

 

[joan]

lol* Gil, we are all confused here. Its helps keep life interesting!! ITs just a great place to throw out ideas and get alot of fed back. Ask away* SOme day we may be asking you ; ) *

joan*

 

[Bernard]

Hi Gil, welcome to the forum. :hello:

First of all, if the carbamazepine isn't working and the side effects are intolerable, you have to try something else. You won't know if Epilim/sodium valproate is the answer for you until you try it.

I undertsand that you are terrified about weight gain, but it's not a life threatening side effect like skin rashes and severe depression which are potential effects of some AEDs. I would recommend to anyone approaching any new drug to keep an open mind. You might not experience any side effects at all.

As far as you being underweight - yes, that could definitely be triggering your seizures. There are several discussions in this forum about diets, vitamins, minerals, fats/oils and other dietary compounds and their role in brain function and seizure control.

I changed from a SAD (standard American diet) to a vegan diet when I was 16. I have studied diets and health (as a lay person) for roughly 25 years now. If you eat the right foods (whole foods - not fried), your body will attain and maintain a natural weight equilibrium. I have weighed the same weight +/- 5 pounds for decades.

I hope you find some inspiration here to overcome your fears. I'm sure you will find support.

The Bene Gesserit Littainy against Fear

 

[Ruth]

Hi Gil

Welcome to our family. I am glad to meet you. My favorite place is creative writing. Just press on social groups and you press on creative writing. There you can express yourself in the way, you want to.

It says join, but you just put your message in at the top. That is how you join.

Feast

 

[epileric]

Welcome Gil

You'll find the people here to be very welcoming & friendly but most of all there's lots of good support & advice from different viewpoints.

 

[Kansas Educator]

Ballerina........... Epilim and Depakote are exactly the same medication -- sodium valproate. The reason it has different names is because we live in different countries. In the U.S., it is called Depakote and in the U.K. it is called Epilim from what I understand. Sodium valproate is used for both seizure control and bipolar disorder because both disorders are the result of a similar "excitability" action/reaction in the brain. Others on this forum could tell you much more about this than me as I am relatively new to it all. My neurologist told me that, while quite a few people do gain weight on it, he has seen many others that do not. Bernard is right about the health benefits of sticking with whole foods. At 53, my weight is very stable and healthy as is my diet. Unfortunately, that wasn't enough to keep the seizures from occurring in the first place but I am convinced that they are less frequent because of it.

 

[Ruth]

Hi Kansas Educator

I like Ballerina, she is a very friendly person. Am I affecting any "excitability" she might be having? I have one son who has bipolar disorder, so I am very well about it. He did not lose weight because of it. We have so many side effects with our seizure disorders. I sent a personal message to her encouraging her for a poem she posted. She is really talented. Her poem was really great.

 

[Ruth]

Hi Epileric

I have found that everyone is friendly. I feel comfortable here. I do know how to do a few things, but eventually I will learn more. One problem is that I am overweight. We all have things to share. I welcome everyone who comes to Coping With Epilepsy. It is a great place to be.

 

[brain]

Here's a suggestion

:hello: Gil

Welcome to CWE, and I wished I
CAN gain weight - instead I'm loosing
it, someone here is stealing it! (Eyes
some specific CWE men in here...)
*laughing*

But please do make yourself a home
here, and do not be so fearful of gaining
weight; there is nothing wrong with that
except it's natural for women to feel "vain"
because after all - that is where they
specialize in: "attractiveness", for men
are 'lookers'.

Moreover, it's not doing any good for your
health likewise, so is it really worth it? Go
ahead and pig out! Enjoy it! As it's been
said - "Life's short, Enjoy it while you can".

But just because you can eat like a pig
does not mean you have to overdo it! Learn
to eat a balanced diet - if you have to do like
what I do, eat 3-4-5 small meals a day (by
breaking it all down, for I cannot handle a
big meal myself for it will trigger problems
for me). Talk to your Doctor about having
a Dietitian to come out and discuss with you
of how to eat more sensibility; this would
overcome your fears and yet, you will begin
to feel much better about yourself and more
in "control". AND a bonus, it may very well
reduce the seizures but it sure will be for
the betterment for your own well being!

Why do I imply this? When one eats properly,
they actually function better and feel much
better overall and generalized (as a body as
a whole). Your Doctor will know specifically
what is lacking (via your own chemistry
and hematology) and what will be needed
so do not be afraid! What I even eat, even
frightens a lot of people, but it is all because
of what I 'lack' in my own chemistry and
hematology, I have to make up for it!

Hope all of this above helps and one thing
I know .... YOU CAN DO IT AND YOU CAN
MAKE IT!

:tup:

 

[Lil 1]

I did not gain weight on Tegratol. I gained a few lbs 6 months into it, but it was because I heard that eating more fats would help prevent seizures and used it as an excuse to eat poorly. After switching back to a healthy diet I dropped the few pounds I gained as well as several more. I think that everyone's experience will vary. I would be more worried about the other side effects... I loved the tegratol, but it took a long time for me to get out of the "honeymoon" phase. I felt dizzy/sick for quite a while. I was a little upset when the doctors decided to change my medications to Lamictal, but it seems to be going great.

 

[alivenwell]

Welcome!!!

I hope we can help you find your way through the complexity and difficulty of your situation. It can be consoling to simply know others are going through the same hardship as you are experiencing.

For me, stress has been such a huge factor. It's stressful to feel lonely. There are simply some days when I live in my own world and avoid the stress. Personally, I find great company in my dog. She doesn't care about the epilepsy. She just wants companionship, food and a walk.

Since you're so young, you're at an advantage to try medications or diets that may work. Some medications are fairly new and work quite well. Personally, I recommend a good stress management technique that works for you. We practice laughter in here. It helps us all defy the hardship of this disorder. Some of us are rather warped and it's not related to epilepsy or our medications.

 

[skillefer]

Hi Gil! Welcome to CWE. As you can see, a friendly bunch. The first thing you need to do, is get your seizures under control. Now...you said that your doc had connected the weight loss to the seizures. It sounds like, by losing a large amount of weight, you basically changed your brain chemistry. So..if you use a med to control the seizures while you get your weight up, then hopefully, it will give your body some time to heal itself. I hope the best for you and will keep you in my prayers. In the meantime, feel free to vent in the padded room, chime in, or just ask questions.

 

[Ruth]

Hi Skillefer

I see your questions have already been answered. Great answers I learned as well.

Welcome to the family. We will give you all of the support you need and answer all of the questions you have.