Hi Guys, Help and guidance needed!

[CJSeattle]

I'm new to epilepsy and still learning about it. I am in the process of testing and doctors don't know yet what exactly IS causing my seizures.

I had my first when leaving my internship one day. I was walking down the street and I started to get really shaky and felt like I couldn't walk. The last thing I remember is being on the phone with my boss. She said she could hear me making weird noises and a woman in the background saying "OH my god she is on her face should we flip her over?" She called 911 and the next thing I know i'm on an ambulence. Oh, and the kicker was someone stole my purse while I was having the seizure!

I have since had 5 others in a 2 month period. 4 of which being in the past 2 days. I am just scared at the point. I have a very supportive family, but they won't let me be by myself for a second! I used to be very independant and loved my alone time.

Any words of encouragement?

 

[gr33nr0se]

i know exactly how you feel, i was just recently diagnosed and had a very similar experience. my family is also very supportive. some important things to remember is that its ok to be upset but stay positive and remember that your family knows you are frustrated. it is very hard to lose independence all of a sudden, and its hard on everyone. remember that everyone cares. also remember that you are not alone. you have plenty of support on this site. i have found that out. its hard to go through this but remember that it gets easier. my dad wanted to put an intercom in my room at night and i was like "NO WAY, IM 16 YOU CAN'T DO THAT TO ME!" so we made a compromise and i now have a curtain at night instead of a door for my nocturnal seizures. its a very vulnerable situation but it gets easier. if you want to know how similar our first seizure was, go to my description, its kinda funny feel better and i hope things get sorted for you

 

[Endless]

Hi, CJ,

Welcome to CWE!

The time right after diagnosis can be really confusing and scary. Your family doesn't want to let you alone because they are scared and worried about you. Once you are on the right medication and the seizures are under control this will probably ease up some.

I remember all the tests feeling a bit like a marathon. They are necessary, though, to rule out physical ailments that could be a root cause. If they don't find an identifiable cause, you aren't alone - over half of all the people with seizures don't know why they get them. All the tests and histories were negative.

Does the doctor have you on medication yet? If so, which one, and what dose are you on right now? Usually doctors have you ramp up slowly on anti-seizure medications. Depending on the drug, it could take weeks to months to get up to the desired dose.

In the meantime, it's important to start keeping a seizure journal that records your daily medications, what seizures you have and when, possible triggers, how you felt afterwards, etc. Here's a string with links to different seizure journals:
http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

Hang in there. All this really does get better.

 

[CJSeattle]

Thanks so much guys. It really does give me hope to hear about other people that have or know someone that has Epilepsy.

I am considering starting some sort of Seattle support group or trying to be involved with knowledge about the topic. Any ideas?

 

[RobinN]

It might take you some time before you can figure out what is causing your seizures, but just be reassured that you went ... how many years prior to your first seizure, and what you want to do is get your body back to that state of health... if possible. I call it raising your seizure threshold. For what ever reason, yours has been lowered. It might occur for some over time. Food sensitivities can do this, as did my daughters blood sugar imbalance.

Now that we have a better understanding how nutrition plays a role in seizure disorders, my daughter has not had a seizure in 7 months. We are not out of the woods yet, because we have to figure out why her hormones are also a bit wacky. Both can increase the chances of having seizures.

So you have to look at a lot things, and the best way to do this is to keep a seizure calendar. Mark any thing you think is relevant on the day it occurs. If your eating habits are questionable keep a diary of your food intake. Sometimes there is a connection between the time you eat and the time you feel off kilter. You will also want to have your vitamin and mineral counts be checked.

I do want to share that I wish we had not started my daughter on meds as a first therapy. I wish I had known then about nutrition what I know now, and how it can effect brain function. The last 4.5 yrs might have been different. However, no conventional doctor will use this as a first therapy.

Good luck with all the tests and I hope you find the support you need here.

 

[Nakamova]

Hi CJSeattle, welcome!

It can take a little while to find the right med/dosage to control seizures. And for some folks the the control comes via nutrition and being aware of triggers, as Robin mentions above. When I was first diagnosed, I wish my neurologist had talked more about specific triggers, and perhaps tested me for nutritional deficiencies. If you can find a primary or secondary cause to your seizures, that can be a plus in many ways.

My seizures are currently controlled by meds, and I live an independent life. So take heart! The seizures may feel scary, but having the support of your family, and looking for information here at CWE and elsewhere are great ways to start coping.

Here's a place to start for a local support group: http://www.epilepsynw.org/

Best,
Nakamova

 

[ColmanMac]

Hi CJ; As the others say, immediately after diagnosis can be a pretty scary time. It certainly was for me. Those who cared for me (family, friends & colleagues) didn' want to leave me alone and, in a way, I didn't want them to as I couldn't come to terms with what I'd been told, was scared witless and didn't know what to expect or where I was heading.

What made things worse was the benighted, thoughtless & shit-for-brains people who would treat me like I had leprosy or something. Yet, slowly and surely, it was that way of being treated that brought me around to the idea & determination that I wasn't alone, that good folk like those on this site actually existed for me & to help me in any way they could - and all that ws required of me was to return the favour!

In a perverse kind of way, after suffering many years of E, the one experience that made me come to terms with my "condition", like a man possessed, was the brain injury I suffered as a result of my E becoming unstable, more intensive & exacerbating.

Following time in ICU I was required to spend around a month in High Dependancy where my instructions were to lie still, do absolutely nothing and enjoy the time being generally prodded & poked to ensure I wasn't going to "die" on the table again.

It was that time that brought me to terms with the good things about being E - and there are good things because it's not the end of the world. I looked around, saw all that I still had in terms of family, friends, job even and realised that if anything I was richer for the experience.

My fellow Es were the experts I needed & those to whom I went for advice & learning - not the Doctors. What's the point of asking a Consultant who has never suffered E when I can speak with an expert, like me, about their experiences & who has been there, done it & got the tee-shirt?!

Take it from someone who was so close, a couple of years ago, to pushing the self destruct button & shaking hands with the Grim Reaper, you wouldn't believe. At the risk of sounding condecending or full of "bs", your life isn't over because of this. Mine didn't end. If anything it began the day the hospital decided they could cope with me no longer & kicked me out!

There's a post, somewhere, entitled "Unclean, Unclean". See if you can find it, have a laugh & get back to me if need be.

Col.

 

[Connie Tech]

CJ-

Get a great Neurologist--should be lots in Seattle. Take your meds like you should, sleep well, eat well, decrease/no alcohol and finish your schooling. Keep in touch!!