hello to everyone! iam a newbee

[charwva]

all of my craziness begin awhile back, having seizures but did not know what they were. august 2010 took a fall from a seizure 4 stitches on the right side of the head. mri. ct.scan and blood work i have a large brain tumor on the left side can not be removed due to location. doc.appt. mri. etc, here iam. iam also bi polar manic depressive and have sleep apena. what is tough ,no one to talk to that understands or has been through this. my partner at times thinks iam faking or making stuff up. i take dilantin and kepra ,which iam learing is causing me problems. it would be wonderful to find out iam not CRAZY!! anyone out there that understands or just wants to chat?

[epileric]

My seizures are also on the left side of the brain & can't be removed because they're on the hypothalamus. I was born with that lesion yet it took 39 years for them to find it.

I know that feeling of not feeling like the rest of people. That doesn't necessarily mean you're crazy though.If you hang around here you'll definitely see more & more people that you can relate to & vice versa.

I personally decided that I was crazy a long time ago yet I like it here

Mwahahahahahah.

[Nakamova]

Hi charwa, welcome!

I'm sorry you're having to deal with the brain tumor and seizures that it's caused. But I'm glad you've found us! There's plenty of support and empathy to be found here at CWE. I hope you feel free to explore the forums and post or chat.

Best,
Nakamova

[valeriedl]

I also cannot have surgery because of where the problems are in my brain.

My neurologist gave me a Vagus Nerve Stimulator. The way that I describe it is it's sort of like a pacemaker for my brain. It's an implant in my chest that is hooked on to the vagus nerve. It sends a pulse up to my brain every so often, the neurologist sets the timing and the strength of the pulse. If I am having a seizure it has a magnet that you rub over your the implant and it will send up a pulse and stop the seizure, or bring me out of it quicker.

Before I got it my seizures would last about 15 minutes or longer and were really bad. Since I've gotten the VNS they only last around 5 minutes and are nothing like they were before.

You can't have an MRI however if you get one, which in my opinion is the only down side of it. I still have to take meds but this has helped me alot.

Talk to your neurologist about your meds. If you don't think they are helping you then he should find something else to put you on.

Talk all you want on here, you'd be supprised to see how many people are dealing with the same issues that you are.

[travel bug]

Hi charwva

I had a similar experience - a seizure leading to a brain tumor diagnosis. My diagnosis came after only one seizure which, fortunately or unfortunately, was severe enough to freak my dad out (and he doesn't freak out easily) causing him to call 911. But I was lucky and didn't get hurt otherwise.

May I ask if you've had a second opinion? Sometimes doctors who aren't used to dealing with tumors may think they are inoperable whereas doctors who have more experience can safely remove some or all of the tumor. The first neurosurgeon I saw didn't even want to do a biopsy due to the location of my tumor. Later, one of his colleagues sent me to an especially skilled surgeon because he felt that in the long run, I would be better off getting as much tumor removed as possible. Because of the surgery, I have a better prognosis, and as a welcome side-effect, my seizures are fewer and farther between and much less severe.

That may not be the case for you, but it's always a good idea to get a second opinion. And you have an excellent brain tumor center in the next state. Duke University has what many consider to be the best brain tumor center in the country.

Sorry you have so many other things on your plate to deal with. Goodness knows Keppra makes some things worse even if it works well for seizures.

It sucks that your partner doesn't get it. I often feel that my sister and others think I'm making a big deal out of things when in fact, I try to play things down just so they won't feel uncomfortable. But unlike you with your partner, I don't have to deal with the situation every day.

Anyway, NO, you are not crazy!

Hugs!

[Endless]

Charwva,

Welcome to the forum!

You aren't crazy. You just have seizures.

Keppra can cause bipolar. So can seizures. So can sleep apnea. It is so important to get the sleep apnea under control. It can make the seizures MUCH worse. As in, Much MUCH worse.

As for your partner - many of us in here, including me, have non-supportive family members. So you've got lots of company. Sometimes family needs time to adjust to the diagnosis, just like we do. My mom came around in time and is now very supportive. My sister still thinks I'm a nut. Having a doubting family member come along to a doctor's appointment sometimes helps.

Hang in there.

[tase37]

very sorry to hear about your brain tumor... I just wanted to say a big hello to you!