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MissJessy

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My name is Jessy. I am 28 and started having seizures about 3 months ago. Medication only seems to make them worse and I am about to lose my job and health ins over them... I don't know where to even start. I just feel like giving up. Is it to much to just want to be me again? Anyone else out there feel like their entire existence has been revoked?
I am a mother and step mother to 6 amazing children, I do rescue work with some animal rescues in the area. I am trying to stay in school, I am studying to be a mortician.
 
I hope you get better!

Some generic advice...

- Go see a neurologist
- Don't be afraid to ask for different medication if the one you are on has bad side effects
- You will have to figure out a way to live without relying on a car
- Think positive (you have kids relying on you!)
- Reduce stress and being tired
- Avoid alcohol

Seizures will eventually be controlled (hopefully for a long time) and life will go back to being somewhat normal.

I've yet to find a drug 100% side effect free but Dilantin was the worst for me.
 
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Go with all of George's advice. Another thing is to avoid caffeine, it's something else that can bring on seizures.

It took a few years and surgery, not brain I had a VNS implant put in, before I could figure out what works best for me. I had been on some with horrible side effects, taken off those, and others that I barely notice the side effects of.

Even after all this I'm still having seizures but it went from having over 20 a month to about 7 a month now. The seizures aren't nearly as bad as they were before also.

It takes a few weeks before you will figure out how the medicine will work for you, finding out if you have any side effects and if it reduces your seizures. It's more or less finding the medicines that work best with side effects that you can handle.

Once you have epilepsy you are always going to have it, there is no cure. It's not like when you get the flu you can get a shot and it will go away. Some people who have been able to find medicines that will stop their seizures and others who can only find medicines to reduce their number of seizures that they have over periods of time like me.

Don't be afraid to ask for help doing things that you weren't able to do. Take as much support and help from your family and friends as you can. This can be hard at times but it's worth it in the end knowing that they are there for you.

Nice to meet you!
 
I didn't know about the caffeine thing?! Anyway, I'm really sorry you're going through all this. I was diagnosed earlier in the year and I get frustrated with it all. One piece of advice I can give you though is that if your meds aren't working then please see your Neuro/GP as soon as you can. Don't struggle and suffer. There's lots of different ones you can try. First & foremost, you need to look after yourself before you can take care of anyone else. Ask for support from anyone you think can help until at least you get things under control.

You will figure out how to make adjustments in your life, it will just take a little time.
 
Hi MissJessy, welcome to CWE!

Yes, epilepsy sucks, and it feels especially hideous in the first few months after diagnosis. Don't be afraid to push your neuro to find a medication that works better for you. And if you don't have confidence in your neuro, don't hesitate to find one who is a better fit.

Don't let epilepsy sideline you and subsume your identity. It can help to be proactive. Good tips and info can be found here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

It also helps to vent -- CWE is a good resource for that. CWE members offer tons of support and empathy.

:hugs:

Best,
Nakamova
 
Talk to your employer. They may be able to make some special accommodations for you until you find a drug (s) that work.

My son doesn't have seizures but injured his back and his employer tries to accommodate him. My employer is also very understanding when I call him and tell him I have had a bad seizure. I work alone and he tells me to close the office and go home.
 
Never be afraid to ask any questions of the neuro you see.
You never know how long it might take to get some type of control, and remember there are a lot of ppl who are ignorant to the fact of epilepsy.
never stop asking questions and looking for answers if your not controlled.
 
Welcome Jessy,

Lots of good advice to be found on this forum so you've taken an important step. Definitely establish a relationship with a neurologist you feel comfortable with, learn as much about your condition as you can and ask lots of questions. Take care of yourself. This is a lifelong illness but it doesn't have to define you. Many of us lead normal lives. I've been seizure free for over 4 years. The hardest part for me was finding a medication that worked and taking care of myself. You need your rest and and a regular schedule. You should eat at regular intervals and eat a balanced diet. Avoid stress and alcohol. This is all good advice for anyone but for us it's imperative.
I've had epilepsy since I was 17 and I'm now 56! I was finally controlled with Dilantin and was on it until recently. I'm now on Keppra XR and I feel pretty good. Everyone's different and has their own path. Welcome to CWE.
Best wishes!
Cindy
 
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