Dropped this semester of college because of epilepsy :(

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Janellie8

Janellie8

New
Messages
171
Reaction score
0
Points
0
Hello my darlings!

I am doing great now that I am back home with my family :) I had to drop out of this semester of college just because my epilepsy was getting worse :( I couldn't focus on school, I was worried that I would have a seizure in class or anywhere in public. I would have intense seizures at night that would leave me feeling depressed, sad and even angry at life. I lived in a single dorm and felt lonely emotionally and physically. I couldn't take it anymore. I had to drop. So now I am home, taking a break from college. Hopefully this next semester that starts in January I will take online courses. I just feel so much safer when I have seizures at home around my family. I am glad to have people like them :)

Since my mother and I are afraid of me getting hurt while I work, we are thinking about doing this thing where I get paid each month because I cant work? I am not sure what its called. I would really love to work, but I don't trust myself yet being able to perform tasks without having a seizure and injuring myself.

Speaking of injuring, last week I had a seizure and I hit my ribs on the edge of my laundry basket. No broken ribs but its definatly bruised and I have this cool bruise that looks like a galaxy :) hahaa

Last week while I was still enrolled in college, I had a seizure at a bus stop. I was on the floor shaking and when I was finished doing my business there was a small crowd around me. I used to feel so embarrassed when I would have a seizure in public, but these people were so kind! One guy offered me food, water and even a ride to my destination so I wouldn't have to continue waiting for the bus- I was just so grateful. Even though my mom kind of was upset that I got a ride from a complete stranger, she was happy that I was okay :)

While I was in college this past month I signed up for yoga. I would say that it has helped somewhat with my epilepsy- I just felt more relaxed and not worried about having seizures. My biggest problem is worrying that I will have a seizure in public. Which makes me become isolated and depressed- that's not good! I also have done a couple of counseling work shops and I found that it has helped me let go of thoughts related to me having seizures in public. Success :)

Since my seizures have gotten worse my Lamictal has increased and now is 100mg 2X a day. Tegretol is 200mg 2X a day. And yesterday my doctor has prescribed me with this new medication... Topamax, which I have started with 25mg once a day and will soon increase overtime. Any good or bad experiences with Topamax? I am also taking medication for anxiety, which has actually helped with my epilepsy! I am less afraid/anxious of having seizures in front of people. And I feel better most of the time :)

I will see a new neurologist this November. And I am interested in the Vagus Nerve Stimulator. Has VNS worked/didn't work for any of you?

Have a wonderful day :)

Janellie
 
Janellie8

Well you had an eventful time, and worrying about having a seizure was not helpful to you at all. The thing is why worry, yes it seems odd, there is the fear of looking like a fool and being so embarrassed after a seizure. But just think about it a minuet, what have you done wrong? NOTHING, not one single thing and could you help it, No you had no say what so ever. So there is no need for you to be embarrassed, its simple its NOT YOUR FAULT, it is every body else who have the problem. So try not to worry, its easy for me to say but think about it, you have no say in any of this, if its going to happen its going to happen.

You cannot be certain you are not going to get hurt even if you do not have epilepsy, ask your mother how many times she has hurt herself. All you can do is take precautions and try not to hurt your self. So if you want to work, you work. Yes I have hurt myself so has just about everybody else that I know, I have had stitches in my hand, cracked skull there is a list like everybody here but I take precautions, still not a guarantee.

I agree with your mother about taking a lift from a stranger even if you are after having a seizure at a bus stop. Your mother is right to be upset.

There are a few people here who have VNS implants, for some it is a great help, others not so good, but I think its best if someone with experience of one tells you.
 
I've had epilepsy for 11 years and I've had a ton of seizures in public. At first it was embarrassing but you sort of get used to it after a while, I know that may be hard to believe. I have hurt myself during seizures but luckily nothing serious, just a few bruises. I think I've hurt myself worse when I'm not having a seizure!

I know if I'd taken a ride home from a stranger my husband would have had a fit! I don't think I would have ever taken a ride either had but sometimes after a seizure you aren't thinking straight so if something sounds like a good idea then you do it.

I can't work because of my epilepsy so I'm on Social Security. Is this what you could be thinking of?

When I was diagnosed with epilepsy I tried a ton of medicines over the first few years. If you can name the medicine I'd probably been on it one time or another. I was unable to have brain surgery (and I don't think I would have had the guts to if I could) and since medicine alone wasn't working my neuro suggest a VNS.

In 2007 I had the surgery to put it in. After I had it put in my seizures reduced a lot. My seizures are usually only partials with maybe one tonic clonic a year. Before I got it I was having at least 20, usually more, partials a month. Since I've gotten it I'm only having on average 7 partials a month. They aren't as bad and don't last as long as they did before. My tonic clonics have stayed the same. I am still taking meds along with it.

My neuro told me that just because I was going to get the VNS it would mean that I'd stop having seizures and wouldn't have to take any medicine, which you see I am still doing both. We found a good combo of meds and I've been on the same one's for about the last 3 years with no change.

After you have the surgery it's not going to start working as soon as you have it put in. It takes a little time to figure out what settings it needs to be put at. Over the years the settings may still need adjusted if your seizures start increasing, which can happen. If you will still need to take meds it may take a little bit of time to figure out what meds and dosages.

If you feel a seizure coming on you, usually a simple partial, will use the magnet and rub it over the VNS. It will help stop you from going into seizure. If you are having a seizure someone else can use it on you and it helps bring you out of the seizure quicker.

It has a battery in it that makes it run. Depending on what your settings are will depend on how long the battery will last. The higher the settings the shorter the battery life. In 2013 my second VNS was put in because the battery had died. My settings are set pretty high. They replace the whole VNS not just the battery. (I am right about this?)

It does come along with a few side effects but I don't know if everyone get's them. Some of the ones that I have are coughing and burping but I'm it's not like I'm doing it every hour of every day. It can cause some people to snore. There are many threads on here that talk about it and their web site is http://us.cyberonics.com/ so you might get some more information about it from those.

The VNS works for some people, even better than it does for me, and it may not work at all for others. If you read some of the threads you will see.

I sort of compare it to medicine in a way. It's something that you don't know if it's going to work for you until you try it. If it's not helping it can be turned off but it cannot be removed. If you have one put in you will not be able to have an MRI, wither it's working or not, because you will have metal in your body.
 
Hi Janellie, It's too bad that you had to drop a semester, but I hope you will be able to get things under control a little more and get back into the game. As for vns info, here is a thread I started that has my personal journey with the VNS, and a fair amount of information from other people as well, so you might want to check it out, if you haven't seen it already:
http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/

Also, I recommend that you go to https://seizuretracker.com/ and start a seizure record for yourself. If you already have a diary of your seizures, go back and enter as much info as you have so you can begin to see any patterns.
I've gotta get going on the day now, but we can talk more later, OK? Best of luck to you!
PS, I think you were talking about disability benefits. In my opinion it would make sense to not apply for that at this point. You are financially OK for now with your parents, and, even though it's not legal to discriminate on the basis of a disability, that might be a label that you would not want to pin on yourself right now.
Onward!
 
Last edited:
Fedup,

I want to thank you, you have given me some confidence. It is not my fault at all, I just have to live my life and if I have a seizure then so be it! There is nothing I could do but keep my spirits up :) Thank you!

Hugs,
Janellie :)




George, Thanks man ;)
Hugs,
Janellie :)




valeriedl,

Hey! This link you have provided me with has given me so much information I am so excited to show it to my parents! :) I am glad you had a positive experience with the VNS! Thank you so much for telling me your personal experiences- that really helped.

Hugs,
Janellie :)




arnie,

Hey arnie! I actually read your thread :) I remembered you posted a thread about your experience. From what it sounds like, you have the VNS turned off and have turned to meds instead? And I actually track my seizures in my phone on a notes app, but this site seems more useful, thanks so much!

Hugs,
Janellie :)
 
Hey Janellie.

That is unfortunate, but you have your head in the right place and are staying positive. Stress may be a big trigger for you, so staying away from it should really help. You do what you feel is necessary to do that.

I've known a few people using topamax. My wife took it for headaches and was allergic. She was having sever mood swings. Imagine that while she was already being treated for bipolar disorder. :roflmao: Just watch those side effects as usual.

Good luck and stay positive.
 
N Sperlo,

Yes stress is definatly a huge trigger for me! But thankfully I am back home where I feel safe :) topomax is also is also used just for headaches?

Janellie :)
 
Yea. My wife is actually on an AED for Bipolar 2 and then they gave her the Topamax for the headaches. Man, that was a mess. LOL. AEDs are often used for other uses. I like to look at them as constantly being experimented with.
 
Ohhhhh! I didn't know that they could be used for other things as well. Hope ur wife has everything taken care of :)

Janellie :)
 
Yeah, Janellie, my vns is turned off. Didn't really work for me, as you saw. I have been on meds all the time, but I just managed to tweak things so I don't have either side-effects or seizures!
 
You must log in or register to reply here.
Back
Top Bottom