Active epilepsy - Univeristy Student

[mnij123]

Hi all,

I am new here so here is a brief intro!

I am a University student, going into second year and I also have active epilepsy. I am on topamax and tegretol right now but we have been trying every kind of meds imaginable to try and get my seizures under control. I was 6 years seizure free but they came back last October. Initially they were just some innocent simple-partials and then now I have simple-partials, absence (i have these often, which is odd since I am an adult), complex-partial (rarely), tonic-clonic (often), and most recently atonics that often are immediately followed by a TC.

I am concerned for starting classes again in a few weeks. I barely made it through my summer terms but those were at night when my seizures are worse and I am hoping that my day classes will be better. I am wondering what others do when their epilepsy is active during University? It isn't like high school and elementary school when I am with the same people everyday. I am lucky with my TCs that I have strong auras before and often have enough time to leave the room and find a safe place, but with the atonics I have no warning and then they become TCs and I am stuck having a TC in a lecture hall of 200+ students. At this point my epilepsy is so out of control that this could easily happen on a weekly basis, if not more.

I want to stay in school for many reasons. I am just wondering how to be stay safe? What do others do?

Thanks!

 

[Crystal11]

I recently graduated college in December and am blind and hearing impaired with complex partial, simple partial and now atonic events. Sounds like a similar situation to yours. What I would suggest is to let everyone know, as in your instructors know as well as the people you will be close to such as a classmate that could be taught how to help you when a seizure starts up.
I would also go down to the student support services office and talk with a counselor about setting up services for you that might be appropriate for your needs. If you take medications, your counselor will take this information and decided, along with you if you need extra test taking time, extended time for assignments etc.

PM if you need any other information or want to ask any questions.
Univiersities usually have great services for students with disabilities or medication conditions.
Good luck with your schooling!
-Crystal

 

[mnij123]

Hi Crystal,

I am Deaf too actually, and I have high-functioning autism. I am well aquainted with accessibility services. I do have extra time on tests and stuff and I do tell my profs about my seizures. The biggest concern so far seems to be that i go off alone to have TCs which obviously isn't safe. The university thinks it is a liability issue too. TCs have very literally become an everyday experience for me recently. I have no idea how I do but I have been fighting the sheer exhaustion and still going to classes and trying to get stuff done. However, as a result I have had 911 called on me more times than I can count in the last few months. That part is not fun.

I don't have friends in my classes, I don't have that peer support at all. If I did this would be easier I think.

 

[McGill]

mnij123: First: Hello!! If there is a Student Services dept. at your university, please get in contact with them! When I went to university, there was one there who acted as a student advocate when students were having troubles with their professors for legitimate reasons. Also, mention what you posted here to the Registrar and the Administrations Office. I don't know that policies of your university, but the one I attended allowed me extra time to write tests and exams - without cheating, of course! What would have been a 2 hr. exam was a 4-hr. exam b/c of the medical problems. Please investigate this.

Also let your professors know discretely about your problems so that they'll have a better understanding that you're there to learn in spite of the apparent "inattention" caused by the absence seizures. They'll be more flexible when a student is genuinely trying to do his/her best and will help them if they are approached. They're more than willing to help out a student, but the student has to ask for help first. Been there, done that!

 

[mnij123]

As I explained, I am very much in touch with the accessibility services office. I have extra time on tests, plus breaks when I have a seizure. During tests I get so stressed out that my seizures increase by a million. During one exam I have TCs alternating with absence seizures for the entire time. I would have TC, come out of it, have absence seizures while attempting to right my exam while I was completely exhausted and not even aware of what I was trying to do, and then have absence seizures throughout that. Then about 20 minutes later I would have another TC. I have written 3 exams since my seizures have gotten that bad. I passed one, and just barely. All exams were intended for 2 hours and I wrote mine in 6. It was brutal. I have no idea how I wrote the exam to begin with. It was all multiple choice and at one point I just started circling things.

At that point I had someone with me who was able to take care of me during and after my TCs. She would make sure I didn't run into things, kept me calm after them, made sure I was breathing, made sure whatever was under my head stayed under my head, etc. Now I don't have that and the school (and me) are a bit concerned for my safety.

 

[RobinN]

mnij123 - welcome to CWE
I can only imagine what difficulty you are having at Univ. My daughter has her seizures usually at school and as you mentioned, at HS there is someone always prepared to help her.

My research has taken me in many directions while trying to help my daughter. One of the places was the learning about seizures and autism. My daughter is not autistic, however my oldest son is high functioning. There is a lot of information in parent groups and autism sites that connect nutrition to your symptoms. It is one of the reasons I because researching it. It has proven to be extremely helpful for my daughter. Not a quick fix by any means. Yet I knew that there would be no harm in trying. She remains med free.

My son is out of the house so I don't have as much influence, however he does admit he is better when he is watching what he eats. Pretty good evidence there.

You might consider that your medication is what is causing you to have the new seizures and is creating the instability that you are witnessing. Obviously it is not helping. Might you consider taking a semester off, so that you can gain control of your seizures, then go back without the added stress, and worry?

 

[McGill]

Thanks, mnij123 & Robin. mnij, you mentioned about getting so stressed out when you take or write exams. If your classwork is up to date, have you ever put the proposal to the administration to allow you to have oral exams or none at all, seeing what you go through? Often, your presence at classes shows the profs a lot and counts towards your final grade.

Robin, I hadn't heard until you just mentioned it about the type of nutrition one has and its effect on seizures. Personally, I try to follow our country's recommedations for proper nutrition, but here's the kicker: what is necessary is often beyond the means of someone who is on a fixed income. Their income is already consumed by the necessities of daily living - rent, heat, electricity, etc. Up here, we get very little financial aid from our gov't. I'm one very frugal person - out of necessity!!

 

[RobinN]

Understandable McGill - however it does not have to be a big expense. Certainly our US nutrition guidelines are not adequate if you consider new information about how gluten and casein can affect the bodies inability to absorb necessary nutrients. Sticking to a diet that was used by our ancestors 100 yrs ago, might be of interest to you. Nothing processed, or foods with additives added. Sticking to a vegetable diet with limited proteins, and taking notice of the types of carbs you are eating is certainly a beginning. This is leaning toward the Modified Atkins diet that is recorded as helpful to people with seizure disorders. Low Glycemic Index diets and the GARD, all listed here at CWE are helpful as well. Many have similar approaches, with a few tweaks here and there. All adjusted for triggers of the individual. Some approach it to heal the intestinal tract first, others are high fat (ala keto diet) and others target the sugar imbalance.

My daughters issues are sugar imbalance, hormones, and minor intestinal issues over many years. So I tend to look in many different directions for answers. There is no one size fits all. Yet there is a direct connect, and new studies are proving this over and over.
If you have any other medical issues that you never have been able to figure out, or if you never considered to be a part of the CAUSE of your seizures... think again. Google the two and see what comes up. It might surprise you.

 

[McGill]

If I understand you correctly, is a vegan diet better than what we consider as a "normal" diet? I've been eating a handful of almonds periodicaly and am beginning to look more towards the purchase of walnuts b/c of their neurotransmitter agents. I assume that I have to wean myself from the contents in the GARD diet in order to have less trouble.

 

[mnij123]

mnij123 - welcome to CWE
I can only imagine what difficulty you are having at Univ. My daughter has her seizures usually at school and as you mentioned, at HS there is someone always prepared to help her.

My research has taken me in many directions while trying to help my daughter. One of the places was the learning about seizures and autism. My daughter is not autistic, however my oldest son is high functioning. There is a lot of information in parent groups and autism sites that connect nutrition to your symptoms. It is one of the reasons I because researching it. It has proven to be extremely helpful for my daughter. Not a quick fix by any means. Yet I knew that there would be no harm in trying. She remains med free.

My son is out of the house so I don't have as much influence, however he does admit he is better when he is watching what he eats. Pretty good evidence there.

You might consider that your medication is what is causing you to have the new seizures and is creating the instability that you are witnessing. Obviously it is not helping. Might you consider taking a semester off, so that you can gain control of your seizures, then go back without the added stress, and worry?

I am on a modified diet already because of many many food allergies. Basically I eat what won't kill me! That is a lot of vegetables, some fruit, nuts, lentils, and white meat on occasion.

To be honest this is the best med combination so far. I was trying to go to school over the summer and would spend maybe at most 1 hour in class (of a 3 hour class) and the rest of the time would be spent either have absence seizures or TCs or a nice combo. It has gotten to the point where anyone who I meet gets a full run through of what to do in case I have a seizure. They have just been so brutal for the last few months.

I was seizure free for a whole two weeks. Actually as a result of me completely stopping my medications (for several reasons) and then after two weeks they came back and with vengeance. Since then it has been hard to control. The TCs have only been for a few months though.

Thankfully my TCs are fairly tame on comparison. When I have several in a day they get worse and worse each time as far as my recovery time and my movement. I have only really hurt myself twice since they started again, both times were cuts on my head and one of them was because of a stupid nurse at the hospital who wasn't watching and let me role off the bed...

Taking time off isn't too much of an option for me. I have many reasons for this but as long as I am physically able to get to class I will be there. It is just figuring out how to be safe during class...

 

[mnij123]

Thanks, mnij123 & Robin. mnij, you mentioned about getting so stressed out when you take or write exams. If your classwork is up to date, have you ever put the proposal to the administration to allow you to have oral exams or none at all, seeing what you go through? Often, your presence at classes shows the profs a lot and counts towards your final grade.

I actually sort of already have the option of oral exams. I am Deaf so I communicate with American Sign Language but I have interpreters for my exams and one of my accommodations for exams is having them interpreted. So that means the interpreter signs the questions and I can sign my responses. Normally I opt to write myself. Multiple choice is hard for me though because they use these tiny little scantron sheets where you have to fill in little bubbles. I will sign my answers for those most of the time because they are just too tiny for me to focus on. My normal exam procedure looks something like this...

I am in a private room (a full sized classroom) with two interpreters, I have a pillow and a clipboard and I sit on the floor for most of the 6 hours. I write as much as I can before I have the first seizure (normally 15-30 minutes in). I lay down, have my seizure, wake up, regain something that seems like a normal mental state and then write as much as I can before it happens again. Normally I finish just as my 6 hours are up. It sucks.

 

[Meetz1064]

I am

one of those who is assisted by diet, although I do take meds also. (I have 4 types of seizures, and the t/c's are extremely violent.) I am a celiac patient as well, which means I am on a stricter diet than the GARD diet...which also sucks beans.

McGill, you don't necessarily have to wean yourself from the GARD diet...you can still use it. If you would like to add the walnuts to it, feel free to do so. Adaptations for each person are fine.

Vegan diets may also work as well. I believe one member is on a raw food diet...if memory serves me, her screen name is LuvMyTwins. You might want to send her a private message.

MNIJ123:

I do commend you for everything you're going through, and I wish I knew what else to tell you to do. You seem to be doing everything right.It's very striking to me, how similar you are to my youngest son. The only difference is that he doesn't have E.

Here's a couple of ideas though: Have you ever considered that you might be photosensitive? That some type of light/light patterns are setting you off? Also, have you seriously considered keeping an E journal? I have a great list of what you ought to put into it, if you'd like to see it. Some people are even triggered by the movement of their bowels.....some by hormones.......

Best of luck. And welcome to CWE. You've found a great place to land here.

Take care.

Meetz
:rock:

 

[mnij123]

Yes, I have put much thought into lighting. I find natural light to be physically painful when it mixes with artificial lights, but it doesn't seem to trigger my seizures. I have experiemented with lighting many times and I don't think I am photosensitive.

I do keep a journal, my neurologist recommonded it. One thing i have noticed is that when I am engaged and stimulated I have a lot less. In class, when I am just watching my interpreters I seem to have more absence seizures. I think it also has to do with the dim light and how much I have to strain to see in a dim light lecture theater (I also have low vision).

 

[McGill]

Meetz, I'm not on the modified Atkins nor the Gard diets. I was simply asking for some information, which I surfed the 'net for. I'll probably have to start with 1or 2 items at a time.

 

[Bernard]

Hi mnij123, welcome to the forum. :hello:

Try to make some friends in each of your classes. The best solution obviously is to get the seizures under control. Maybe this will help:

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Added:

... In class, when I am just watching my interpreters ...

So you are accompanied by someone to your classes? You might educate them on the proper responses should you have a seizure in their presence.

 

[mnij123]

So you are accompanied by someone to your classes? You might educate them on the proper responses should you have a seizure in their presence.

They are aware but it isn't their responsibility and I did rely on them last term and it put a lot of stress on them and we are trying to avoid that this year. The school talked about sticking someone with me to just deal with seizures but I am not sure what i think about that or what will actually happen.

 

[skillefer]

Well, make sure that your taking care of yourself. Eat right, get plenty of sleep, and schedule things so that you don't have too much stress. this might mean cutting the number of classes you take at a time. Make sure your professors know abuot your seizures and what they look like so they don't freak out if you have one in class. Also, you might want to consider a service dog.

 

[Crystal11]

mnij123- I am sorry to hear about your sieuzre happening during a test. I've had that happen two or three times. I was lucky and my testing center let me come back to finish them.
I use interpreters too. They were trained for deafblind and they always could tell when a seizure would happen. It was crazy- they would ask "Are you feeling okay? You look pale." Then I knew if Umbro stood up and put his head on my leg, that a seizure would happen.
I had all of my tests in Braille since large print is too hard to read. Give me headaches and my acuity is 20/2400. (normal vision is 20/20-20/10)
Anyways- do you use VP? Let me know- we could visit using sign/ASL that way.
I really hope that your seizures improve or your meds work out better for you.
I also have complex partial seizures with atonic if missed meds. But today I had another one even though I started Keppra XR a few days ago. Frustrating..

Anyway- let me know about VP if you use one or not- maybe we can visit in person over VRS. I use Sorenson.

Crystal and her guide Umbro