I am new today looking for individuals who can help me cope with this condition

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DJB031207

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I started having seizures shortly after having 3 brain surgeries due to an A.V.M. rupture on Christmas morning of 2008.

I have the grand-mal seizures everytime I have one it's usually followed immediately by a second grand-mal seizure the aura I get is a bad smell and an instant feeling of nausea that usually is followed by severe vomiting. I live in fear everyday from this condition anytime I get a smell or involuntary muscle movements I instantly become scared beyond belief, I live alone with two small children and never know what may trigger one and it's really having an effect on my life. I'm currently taking two seizure medicines Keppra(6000mg daily) and Dilantin(500mg daily) both generic bands.

If this is something I have to deal with the rest of my life how do I cope with the fear how do I overcome this?
 
Hi DJB031207
Welcome to the forum,im sure you will find a lot of the answers you seek here,take care!!!!
 
Hi, im also new today and im glad i read your thread.

i have grand mal seizures and i also live in constant worrie every day.
i am also on keppra but i take 3000 a day.

recently i have been diagnosed with anxiety and panic attacks because of my epilepsy..which was wierd because i have known about this for 7 years now. i went to my nuerologist and i spoke with him about what are the side affects of keppra.. he told me keppra does some funny things to differents people and he has now lowered my dosage to what it was before. 2000. i have only been lowered a week but i do feel some changes and i will also be put on a anti depressant within the next week. it may be something you want to look into because i couldnt even go to the gas station without panicing, its really taking over my life. i wish you the best of luck
 
Welcome

You've come to the right place. I've never seen a place on the internet or anywhere else with more support for any problems whether medical or emotional.
 
Hi DJB031207, welcome to CWE!

I'm am sorry you are having to deal with both the seizures and the anxiety about them. I wasn't sure from your description which was causing you more concern right now. (I know, they both suck:( ) For the anxiety, it may be worth contacting your regular doctor to discuss treatment options such as counseling. It can help to be proactive, and deal with the anxiety before it arrives -- for example, take regular breaks throughout the day to depressurize, breathe and clear your mind. As little as half hour can make a difference. For some people, writing or talking about it can help too -- it seems to help the anxiety exit the system. Do you have a friend or family member who can check in with you on a regular basis? And it might help to develop a comforting routine for when the auras hit -- maybe have on hand something that smells nice, or a favorite photo or image to look at, or a soothing song to listen to. And you should feel free to log on here and vent -- CWE members are good at listening and understanding!

For the seizures, you should talk to your neurologist about trying a different med to improve your seizure control. There's a possibility that the meds are contributing to your anxiety. Keppra in particular can affect mood, so it may be making things worse. The fear/anxiety may also be part of the aura, so one way or another getting better seizure control would lead to fewer auras, fewer seizures, and less anxiety associated with either of them.

Keeping a seizure journal might help to identify stressors that are triggering your seizures. Fatigue is the #1 trigger, but they can be anything that causes physical, physiological, or emotional stress. Some folks have found that certain foods or diets are problematic, or certain times of day, or certain temperatures. Some are triggered by sounds or flashing lights. It's not always possible to isolate a specific trigger, but the journal can still provide information that can be helpful when you are trying different meds or different dosages, or tracking side effects.

I hope you can get some peace soon, and I'm sending a big hug to you and your family.

Best,
Nakamova
 
Hi, DJB,

Welcome to the forum!

Epilepsy is scary. There's no way to sugar coat it. And your seizures are severe, so I understand why you are afraid of them. I'm not going to say you get used to them, because we never do, but we do find ways to accomodate them - move our life around so that the seizures affect us in the least possible way.

We can make the fear better. Counseling is one way. Medication is another. Reasoning with one's self is another. Having a plan to make yourself and your children safer during a seizure is yet another.

You mentioned you have auras before your seizures. Do you ever feel intense fear, like terror, before your seizures? I describe it like being a deer in headlights. Someone else in here described it as how you'd feel if you jumped off a builidng and you were half way down. That is a kind of aura, too.

The reason I am asking is one day I noticed I was afraid all the time, and that I was afraid of everyday things - the phone ringing, sleeping, stairs... And I wondered why. I finally put it together. Every time I had a fear seizure my mind thought I was afraid of whatever I was doing or looking at at the time, like the phone rining, sleeping, etc. The reality was that I wasn't really afraid of those things, it was the seizures.

Pretty soon I was afraid all the time, of practically everything. It caused a lot of anxiety. I was kind of a basket case. I don't talk about this much because it still bothers me to think about it.

Anyhow, I started de-programming myself. Every time I heard the phone ring and I was terrified I'd say to myself, "its not the phone, it was a seizure. I'm okay. I'm safe." I did that for everything I was afraid of. It helped. I'm not afraid of the phone or going to bed any more, or the other 1000's of things I was afraid of. My fear and anxiety levels are way down.

You have small children. How old are they? What is your plan for when you have a seizure? We have people in here with children ranging from 1 month to 16 years. They've dealt with seizures and children for a lot of years. One man needed a stroller that didn't roll away when he had a seizure. (We found one) I guess the point is, let us help with a plan. Once you have one, you'll feel better.

Small children... I have to assume you aren't driving. How are you managing?
 
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