Hiya just thought id say hello

[Jemma_x]

Hiya, well my names jemma, im 17.
ive joined here to make new friends and to get support.
My epilepsy was caused after i was run over but lay dormant in my body for nearly 6 years after which is when i first started suffering from fits, at first i was having 2-3 fits a day but when i was officially diagnosed with epilepsy and put on medication and now the fits have reduced and if im lucky i can go 3-4 weeks without one.

Hope to speak to you soon

Jemma x

[RobinN]

Hi Jemma_x
WELCOME to CWE
Even brain damage can be stabilized, so do hang on to HOPE.
My daughter is now med free and her seizures have been greatly reduced, and we hope to get them completely undercontrol this year.

[Supplice]

Hey Jemma and welcome. =)
Everyone here definitely seems nice so you should like it here.
Anyway wish you the best of luck. =)

[brain]

Jemma!

Glad to have you here in CWE! I'm curious after
reading your profile. Are you on Tegretol or Tegretol
XR? I've heard positive reports on the newer XR than
the old Tegretol itself. (I can't take Tegretol, I'm allergic
to it) So make yourself a home here!

[joey]

hello

[jazz'smum]

Hello and Welcome
you will meet great people here
All the best
Cheryl

[Jemma_x]

The older tegretol im on, it has really helped for the past couple of years but lately ive been having more fits then im used to so my nuerologist is thinking of changing my medication. he doesnt really explain much to me, he's pretty useless to be honest. could anyone tell me if its dangerous if they change my medication??

[brain]

They have a newer Tegretol XR which is an extended release,
so that people won't experience those 'humps' and it levels it
out more evenly. But however, if you are not happy with your
Neurologist or Epileptologist, you can always sit down and try
to work things out; and if that approach isn't effective, you
can always seek out for another Neurologist / Epileptologist.

Anti-epileptic drugs does not eliminate seizures 100%, although
there are individuals out there where such medication(s) do
eliminate the seizures entirely.

Question:

How long has it been since you've had an EEG or video EEG?


Seizures can change; they can go away, they can get worse,
they can remain unchanged. There are many different avenues
to look into. And it's true that some patients can develop tolerance
(resistance) to one or several medications after being on it for
such a long period of times while others it has no impact and they
can be on it forever. Everyone is unique, so everyone must be
tailored and treated in an individualized manner.

I strongly recommend that if all possible that you keep a diary, a
log, a journal - and if all possible, any witnesses that may be there
that have seen you during the seizure ("the other side of the fence")
so that the Doctor may be able to get the whole picture of what is
all going on.

I am very much a strong advocate of 2nd opinions as well, and if
you're able to, I'd recommend that you seek for a 2nd opinion if
all possible. Clicking on Head Storms Resource Center - you will
find the link below the signature line and from there clicking on the
banners will take you directly to the International Epilepsy Site if
you're from an International Country, if your Country is not listed,
you can PM me and I can obtain the info. In United States, you can
click on Epilepsy Foundation - and click on FIND A DOCTOR - and
there - you can go and find one for a second opinion and advisories.

Hope this helps!

[Jemma_x]

the last time i had an eeg was about four weeks ago, ive never had a video eeg and if im totally honest my neurologist has never mentioned them, the only other eeg i have had is a sleep deprived eeg. what happens during a video eeg??

[RobinN]

Hi Jemma... cute picture

My daughter had a V-EEG and she spent the night in the hospital and was wired up like a regular EEG. However in addition there was a video camera recording her. In the event that you have a seizure it can tell whether or not there is abnormal activity in the brain.

I wouldn't take EEGs as the end all tests that they are made out to be. Surely they can give some clue as to what is going on, but you will find out plenty of times that they do not record abnormal activity. This can be misdiagnosed and when actually there is something physically causing seizures.

Keep searching for answers if you are not controlled yet. If your are not happy with your neurologist take time to find a new one. I know that is a daunting task but worth it when you can find one that you communicate well with. Understanding is half of the battle.

One suggestion I would make is to read:
http://www.coping-with-epilepsy.com/index.php?p=books

There is so much you can do to help yourself, outside of taking medication.

My daughter took Tegretol XR and it caused vision loss. This was her first medication and the trauma that added to an already bad situation was horrendous.

I wish you well and hope you find helpful suggestions here at CWE

[Bernard]

Hi Jemma, welcome to the forum.

3-4 weeks without a seizure sounds like a big improvement from 2-3 a day! Maybe you'll find something here that helps you get 100% control.

BTW, there is a lot of good info in the threads listed here: epilepsy 101 threads

[JLynn]

Im new here too, want to welcome you here as well.
In just a few days Ive poured my heart out here so to speak,
have received some great support, information, and learned a lot
about my condition by sharing here. Some great people here to!
Jlynn

[Loudmouth]

Hi Jemma, is your neurologist an epilepsy specialist? I know that there are only 18 in the country. If your neurologist isn't being very helpful with your treatment etc, you can go to your GP and ask for a referral to another through the 'choose and book' system, hope that helps you. It's taken me 5 years to find out this information, and a lot of help and support that I do have is through this site. Does your area have any Epilepsy nurses? Some areas do, some don't (mine doesn't). If your area does, it might be worth asking either your GP or your neurologist if you could see him/her, I have family in other areas of the UK to mine (not your area, so I don't know services in Rotherham) who have told me that their Epilepsy nurse has always been a much better source of help, support and information than either their GP or neurologist. I'm glad to hear your seizures are getting less frequent with medication, and I hope things continue that way for you.

[Loudmouth]

OH for goodness sake I can't even spell the reason for my corrections properly! I give up!

[tinasmom]

Hello Jemma -
Welcome to this wonderful forum. Here is a site that will help you with getting information from your doctor. http://www.NoMoreSeizures.org
I was looking at this today and it gives you a lot of information on how to talk to your doctor.

[RobinN]

Hello Jemma -
Welcome to this wonderful forum. Here is a site that will help you with getting information from your doctor. http://www.NoMoreSeizures.org
I was looking at this today and it gives you a lot of information on how to talk to your doctor.

Problem is ... on that site, the only therapies are meds, keto diet and VNS.
Not acceptable to me...

[Meetz1064]

to CWE. You've found a really cool place to be. This is such an AWESOME home that Mr B (Bernard) has made for us here.

Bernard gave you an excellent thread to check out...the epilepsy 101 thread. Have you considered working on your diet to help control your seizures? Look at the thread in the bottom of Bernard's post about alternative therapies...that will be a good place to start, too.

Stick around, Buckeye should be here soon with some coffee. Feel free to vent, or whatever you need to do.....we'll be here.

Take care.

Meetz

[tinasmom]

Problem is ... on that site, the only therapies are meds, keto diet and VNS.
Not acceptable to me...

I understand how you feel about the therapies listed here, but it does give good tips on talking with your doctor. I hate the idea of giving Nicole meds that have such horrible side effects. One good thing is that she is on a very low dose. I need to do more research on natural remedies. I believe that if you have a good neurologist, they will be willing to try alternatives to meds.

[skillefer]

Hi Jemma! Welcome to CWE. As you can see, we're a pretty friendly bunch. Feel free to ask quesitions, vent, or just chime in. Welcome.

[BuckeyeFan]

Pull up a seat and relax here for awhile. I have the coffee brewing (or tea or cocoa). I hope you find additional answers here. I read your post on the 'Heroes' thread and it sounds like you have a great support group around you. Now you have one extends all around the world.