New. Not dealing so well

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Lan

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Well this is my first forum thing, so I don't really know how this whole thing works.
I suppose I'm looking for a bit of guidance and to feel less alone in all this. Im an 18 year old girl and before my diagnosis last feb I didn't even know epilepsy existed or what it was. And now I have it I don't ever remember feeling so alone. I don't know anyone else with epilepsy and I've been to scared to tell most of my friends. My family has been great and supportive but they scare me, always fussing over me making sure I'm feeling ok when B.E (before epilepsy) they barely noticed my existence, so all I've been doing is trying to reassure them that I'm ok.
On top of this my medication (epilum) is giving me some wonderful side effects of migraines mood swings and the occasional inability to keep my food down for a few days. As a result of this I've lost a fair mount of weight which promted rumors that I'm now anorexic.
I'm just looking for some help and guidance if anyone could help that'd be great!
 
Hello Lan. My daughter is 16 and has epilepsy. It's hard not to fuss when your child has E. we try very hard not to but I Do ask her quite often if she is ok. Do you have seizure control on epilim? Perhaps if you go a while without a seizure your family will relax a bit. I know it's been easier for us since Rosie went on meds. She has been suffering with mental health probs though and lost weight probably due to anxiety. She is very upfront about having E but I don't think her friends have much understanding of it. I hope joining CWE make you feel less alone, there's some really great people here x
 
Hi Lan, welcome to CWE!

It may take a while before you and your family settle into the right balance between being protective, and being over-protective. It's great that they are supporting you, and it sounds like you are aware that their concern comes from the right motives.

If the Epilim is causing weight loss, migraines, and mood swings, then it's not necessarily the best fit for you -- ask your neurologist about trying something else. If the Epilim works to completely control your seizures, that suggests that other meds will work as well.

I hope you feel free to explore all the forums here. The members are great, and have seen/experienced it all when it comes to epilepsy.

Best,
Nakamova
 
Hi and welcome,


I had E. all my life but was not diagn. until I was 18, I now 60.

I have TLE on the right side.

It has always taken a combo to get the best control of my seizures.

The people on this forum are understanding, try to be helpful and are there for you when you NEED someone who understands.
 
Thanks everyone. I've been to scared to talk to my doctor about changing medications for fear of having more siezures but maybe since epilim works others will to but without the horrible side effects! I have an appointment with him in 2 weeks so will discuss it with him then. its good to know im not alone in this battle.
 
I've had epilepsy for 10 years now and when I was first diagnosed my family didn't want me to do anything without anyone there to make sure I didn't have a seizure. It was all I could do to go to the bathroom with the door shut because they were afraid that I might fall off the toilet!

Through the years it has gotten better. I'm having less seizures now. I don't know if you want to call them controlled or not. My family sees that I can do things alone and they can cope with it. It took a while and a good bit of different meds for me to get this way however.

Don't be afraid to tell your friends. It's better they know what's actually going on with you than to make up their own stories.

Glad to meet you!
 
I and I know I can speak for the others, that changing meds. is scary. However that is the only way to find works for you.

Is this 1st. meds. that your Neur. has tried?
 
Hi there, nice to meet you :) I'm new here as well. You are not alone any longer. From what I've seen so far...this place is great! Grab a soda and stay awhile! My first two meds did not work for me. After my 3rd trip to the ER, I threw a fit and demanded a different medication. This 3rd med hasn't worked either, but at least the tonic clonics are under control and those were the scary ones.
You will find what works for you, I'm sure. And hopefully your family will find a balance as time goes on. You should find a way to tell your friends about the E.
It's nice to meet you!
 
Hi Lan! I'm new to all of this too. I understand not liking your meds, I'm not a huge fan of Keppra, but I have to wait to see if I qualify for Medicaid to see a neurologist and talk about changing it. It is all very hard and I'm not much older than you. If you ever want to talk to someone who is still adjusting and whatnot, feel free to get in touch with me :)
I hope things get better for you soon!
 
Thank you all so much i can't comprehend to you all how gear it feels to know I'm not the only one who has struggles with this..
I know my family are only concerned its just very frustrating but hopefilly in time they will begin to relax a bit.
Yeah epilim is my first medication and it stops the siezures which is great if only it didn't come with side effects, hopefully a new med will help.
I'm considering moving out of home and was wondering also ehat your thoughts were on this, my parents aren't keen obviously but an objective opinion would be nice .
Eared2009 what's Medicaid?
 
Welcome. Lots of family members and friends are freaked out when their loved one gets E, but no one here will do that, rest assured. Do some research on meds and definitely do not be shy about telling your neuro you want to change. My daughter has been on Trileptal since she had her first sz. about 8 years ago (she is now 31) and has never had any bad experiences with it, and has great seizure control. I was on Dilantin for about 15 years (starting in 1982), Lamictal for 15 years after that, and now Lamictal and Trileptal. have I had a short stint on Keppra and Zonegran and hated them both. My seizure control is not great. I don't have the big tonic-clonic ones any more, but I have lots of partial szs still. Nevertheless, I'm willing to put up with some szs to be on meds that don't have lots of nasty side-effects. Feeling nauseated or totally drugged or suicidal is much worse than partial seizures, IMO. Be assertive with your doctors about not wanting to put up with the side-effects. Good luck! Stay in touch here!
 
Medicaid is a medical card. We're unfortunately low income, so we need some help in the insurance department.
 
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