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MaggieQuern

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Hi. I am new to this place. I want to get to know other people with epilepsy. Just for a background, I was diagnosed with epilepsy in November of 2011. I was so scared about everything that I stayed home all the time. I've had countless grand mals, petite mals, partial, and silent seizures. I still haven't been able to go 6 months seizure free. The longest was 5 months and I just came up on 4, but my neurologist wants to change medications, so that ended for me today. I need help. My doctor first said on my first EEG that I had some disturbances. Then when he did it again there was nothing. But I know what I'm feeling. Two summers ago he decided to send me home from a 3 day video EEG and told me to stop taking my Keppra that night I went home and to come back once the seizures started again. I was completely uneasy about that, so I ignored his wishes. I didn't go to him until this month since I couldn't find a new doctor. Now he is switching my medications and I feel like it's too fast. But he wants to do another EEG in July, so I really have to do what he tells me to do. All day I have been feeling like I'm going to have a seizure. I did have two back to back today, but the feeling in my head won't go away. I'm so scared of having a seizure because my sister will have a panic attack and won't be able to help. I have no where else to go. I feel like I have to keep this to myself. Our mom just passed away two months ago and I've come to realize that I don't have ANYTHING for seizure support. I couldn't even tell my sister that I HAD seizures today. I really just don't know what to do. Is there anyway that I could possibly make the feeling in my head go away? The aura thing? I really need some help.

Thanks in advance to anyone who responds to me
 
hello maggieQuern I'm sorry to hear you stay home all the time.I've had epilepsy for 50 years and I can't drive but I get out and I refuse to sit home and wait for my sz's.
My sz's were happening quite often all the time.I'm sorry longest you have gone sz free is 5 months. At one time I was having sz's every month or every other month and you can't allow your sz's to control your life.Have you looked for a new neuro at at university/hospital? There is one not far from were I live.
 
I don't really tend to try to stay home now. About a month ago I decided to try to get out more often. But because of where I live it's hard to go places in case of emergencies for I don't drive either. My physical therapy place, the ladies there actually want me to now check in with them. But I only have them until about 7 at night and most of the time my family is out later than that. I can normally talk to my sister about anything ,but I can't when it comes to this. Yet this is something she needs to know. She knows what to do during them ,but she would freeze up and have a panic attack. My dad is the only one I can talk to about this and he is at work most of the time. I just need people to talk to.
 
Oh and also, how often do you have them now? I'm glad they started calming down for you as far as I can tell. And yes I have looked into a new doctor but its hard to find any that take my insurance. Mainly its just a hastle and then I get stressed to were I want to start pulling out my hair and cry, okay that just made me sound crazy, which I promise I'm not, and sometimes stress can bring on some seizures for me
 
Welcome MaggieQuern

Sorry to hear about your seizures but it is great that you were finally diagnosed. It just means that now you can deal with them medically.

To be honest I think you're so lucky to have so few. I have a minimum of 1 a day now, though I have to admit I don't have tonic/clonic (grande mal) unless I don't take my meds (which never happens).

Something I have learned though is not to try & break my record of how long I've gone without seizures. I went 10 days without seizures once. Oddly enough on the 11th day when I did have a seizure I was upset for ending my seizureless streak rather than be happy that I'd set a record. My advice would be to document your seizures & when they occur but don't get caught up in constantly trying to break your previous record going without a seizure. I've learned that to be nothing but a self-imposed cause of frustration.
 
Dear MaggieQ,
The worst thing you can do is to obsess about having a seizure. That will indeed trigger you. If you read more posts here they will confirm that worrying is a trigger. I KNOW IT'S EASIER SAID THAN DONE! Believe me! You have a lot of stress right now with losing your mom, that is also adding to your stress. You have to confide in your sister, if she's the only one there for you. Right after my husband passed away I was in very bad shape. If it hadn't been for my sister-in-law, who doesn't even speak English, I would probably be dead.
So please tell her she has to be strong for You!
Good Luck!
M
 
The reason I am trying to go 6 months is because that's the law in order to drive and basically be able to get a job. I am getting frustrated because today while I was at physical therapy I started getting an aura and Jessica, my PT, had me go lay down, then my sister's boyfriend kept texting me getting mad that he was waiting in the parking lot and I wasn't there. My sister, whenever I TRY to talk to her about it, she gives me an evil look saying, "control your body or I'll have a panic attack. And I don't want you to go to the hospital because you know what happened last time we were there." She was referring to when our mom passed away. The only people I can talk to is my dad, and he is always at work, and Jessica. Which I obviously can't talk to whenever I feel like I need to talk. Although with my physical therapy place, we set up a plan for when I'm at home alone and I feel an aura, which I'm very thankful for. But just knowing this, it makes me worry.
 
Hi Maggie,
Welcome to the forum.
So sorry to hear about your Mum, the stress of losing your mum may have brought on the seizures.

I had seizures as a baby/ toddler but went seizure free for 21 years until they returned in 2012. After my seizures returned the longest I went without a complex partial was 5 months but a simple partial or aura was probably 1 month.
I had surgery in 2011 which did help control my seizures & now I just have the odd funny feeling.
 
Thank you very much. It's very likely to have helped bring them on, as well as my doctor is changing my medications. So that really doesn't help.

I'm very glad that they have gotten better for you!! That's really good news!! I'm sorry that you did have seizures though.
 
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