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Lauren...
no driving, no work, no school, now what?
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I was MIS-diagnosed with Juvenile myoclonic epilepsy in february 2008 after I had my first grand mal seizure. I'm 22 years old trying to get through college...and ironically I want to be a doctor. now my whole life is on pause I can't drive I can't work because I can't get there and obviously I can't go to school. I try to be strong, but with every doctors visit and every medication change it gets harder and harder. I haven't been seizure free in 6 months and all I want to know is if one day I'll be ok...is there anyone on this page that was dianosed and eventually came away from all of this ok??? It is really hard not to be discouraged and I'm sure you all know where I'm coming from, according to my doctors I'm still new to all of this and I have a long way to go and maybe that is the scariest thing of all, is coping with the idea that there is no definitive "end" to all of this...I dunno...your thoughts??
Recent Comments on this Discussion
You're totally hilarious lauren,
I will assure you that everything is going to work out*. I was diagnosed in '96 and that was on my 16th b-day!, needless to say I held a lil grudge about it once I found out that I wasn't going to be driving any time soon. After 3 different meds we finally found that depakote worked best. Better yet I can give you the gnarly news that I've been seiz free for 10 years! Now you're doin the math and thinkin bout how they told you that it'll go away after awhile. Well on that note I still have yet to see that proof, if anything I've been getting worse lately. Dunno for sure tho, seein the doc on tuesday.
My recomendation is to take all those sayings that you've heard in your life, (i.e.,everything happens for a reason, Rome wasn't built in a day, *, one step at a time, etc.), and start applying them. Seriously, I really hafta say that they helped me alot. I also started believing in karma around then, not to say that I did anything bad to get the ep lol. Far as now goes, make the best of your time! You'll be back to your daily routine before you want to, promise!
w/b if you have any questions!
hang in there bud!
hey lauren it must be hard to be new to this i couldnt imagine having them all of the time and a grand mal seizure is realy scary iv had two of them. i had my first seizure when i was 17 then had three more,then when i was 18 which is when i had grand mal seizures the nereologist didnt know what caused them so he put me on 200mg of Lamictal and i hadnt had a seizure in 3 years up until last month i had two because my doctor took me off my meds because everything looked good i had an EEG and MRI i guess that wasnt a good idea im going back on them and i havent had another one yet my nereologist did figure out that i was having temperal lobe seizures. i lost my driving privlages for 6 months at 18 it was hard but i got it back now i cant work or drive im to freaked to so now im just trying to relax i also take valarian root and passion flower tablet wich keeps me calm because i get intense panic attacks wich is a symptom of temperal lobe seizures so im just trying to ride it out so good luck i hope you figure out how to control them youll be ok this too shall pass hang in there
Lindsay
Hi Lauren,
I, like you, was misdiagnosed earlier on. My attacks were misdiagnosed as migraines until five months ago when I was referred to a neurologist who diagnosed me with partial/complex partial seizures. It's not fun when you are having 2-3 seizures on some days and trying to work. I can relate in some ways to the feeling that your life is on pause. I actually joined this site because I felt so miserable about the diagnosis. I have spent just over two years of my life giving other people bad news, and now it was my turn to receive some.
Yep that's right - I'm a Doctor. I had to take five months off work while I was started on Tegretol. I kept thinking why now? Why me? Thankfully fingers crossed I think that I may have achieved control after five months. My neurologist is also a colleague of mine and put me on a very slow increasing dose so that I would minimise my risk of side effects and so that I could slowly become accustomed to it and that worked for me.
Try and stay positive. Ensure that you have a good relationship with your neurologist and if you are not happy with the medication, then flag it up early on. When I was wallowing in self pity (and I still do at times), I felt very out of control of the situation - I was taken off work and not allowed to work until I was 'fixed', I had no control over these damn episodes, I seemed to sleep forever after them, and also I had a shocking reaction from some of my colleagues. I felt that not only had I been given a life sentence - but the very people I worked with on a daily basis seemed to see me in a different light. Some wrapped me in cotton wool - others suggested that I should perhaps leave medicine, until my neurologist told me this was all nonsense and that I should ignore it.
Some people have epilepsy and are on life-long treatment with good control, some people have epilepsy and later when they come off the treatment they no longer have seizures, other people unfortunately have a rougher ride of it
Don't lose faith. I can only assume that the system is different here in the UK but I would think that there would be a system in place to help you.
Ps. Good luck with medical school. I know you'll get there ;)
Hope-
Simply reading that you are doctor has answered about a half milllion questions that I had. I wasn't even sure if i should pursue medicine anymore in fear of the stress it was going to put on my body. It is my number one goal in life so obviously I will be pursuing it no matter what. Thank you for replying, i appreciate it.
I'm glad I was of some help to you. Have you identified any obvious triggers at all? I can only give you my own experience, but everybody is individual. Stress of a busy day, a packed "Emergency Room" and lots of very sick patients have no effect on the seizures or their frequency for me. Sleep deprivation, working 12-14 hour shifts with little breaks, and the jet lag feeling of night shifts or finishing at 2am - these are the things that caused my seizure control to go off big time. There are things that you can do to try and minimise this - way in the future for you I know. First of all, it may be potentially avoidable depending on the speciality because not all specialities will mean horrific hours. Remember to look after yourself. Take breaks, remember to eat (yes you can forget!), and if you are doing nights then try your best to sleep during the day. ALWAYS take your meds - when your shifts change, your tired and all messed up you can easily forget. Sleep deprivation can trigger seizures and from my experience that was the biggest trigger. If you find that you still have poor seizure control I know that in the UK you can work on a flexible training scheme which is pretty much 9-5 and you can do that in any speciality.
I know that is way way ahead in the future, and I hope you enjoyed that mini lecture ;) but what I'm not trying to say is that it is certainly not the end of the world. Also, apparently I was probably seizing all through med school according to my neuro (I was diagnosed with migraines back then) and I studied and passed fine! The biggest barrier would be your self-confidence. The reason why I joined this forum was because ultimately I felt crap and I wanted to speak to people which also had these bizarre experiences. Just because you understand epilepsy, and have patients yourself with epilepsy does not mean that the diagnosis is any easier when you're diagnosed with it yourself. Dont let it ruin your confidence. My neurologist tells me that there are "lots" of doctors with epilepsy who are well controlled.
How many seizures are you having ? Have they all been grand mals?
Lauren I was partially in your situation. But I was also lucky. I am 38 and was diagnosed with Complex Partial Seizures last May. I wasn't able to drive for at least 8 months. Nor was I even going to attempt to drive. I didn't want that risk on my mind if I wrecked again and hurt or killed someone. When I found out I was having them I was actually driving at the time when I wrecked out! I was lucky because no one else was involved in my accident. It was just me and I came out of it ok.
The frustration you are feeling is something that we have all felt and all have had to deal with. I've been threw 3 med changes and several dosage increases. It's not fun and can be really frustrating. I can honestly say this becuase I will be calling my Doctor tomorrow becuase I am am having slight seizures more frequently now and I will find out what he wants to due next. It may be another med change or another increase to my dosage. I won't know until I hear back from him tomorrow. Also be completely honest with your Doctor and also with yourself. Do what ever it takes to make sure you get this all under control.
What I can say is just keep knowing that once this all gets controlled you will have some normalcy to your life again. It's just gonna take some time. As the others have suggested check with your school and see what they can do for you. I'm sure they have to do something to help you get the education you want to get.
Also just know that this is a place you can vent and find answers to what you are looking for.
Good Luck!
I am going to be honest with you. I have had seizures for 10 to 11 years. I can't drive, lost jobs due to my seizures, can't be trusted to go anywhere by myself. Yes now I still can't drive, I don't work ( I am on disability, which sucks), my family still checks to see where I am going when I leave the house. I do get frustrated but I look at it like this: I rather get a ride or walk than drive when I can hurt myself or someone else, I rather be at home right now than at work when people don't understand what I am going through ( I will find a place where people understand, I did before), and my family is slowly understanding I am responsible enough to know when I am not feeling good to stay home not to go outside where I can fall out and hurt myself. You have to realize yes I do have epilepsy but it doesn't have me. I don't drive, I don't work, and I don't go to school. Now what? I will go walk, go catch the bus, or get a ride to get to school when I am fine. I will get to school yes it may take some time but I will get to school, that is what I want to do and that is what I am going to do. Don't say and don't feel WHAT NOW! It is WHAT NEXT AFTER I DO! It is hard to deal with seizures yes but you deal with so you can deal with anything, I mean ANYTHING. We deal with the pain after the seizures, the forgetfulness, the frustration, the embarassment, the time on waiting on the meds to work, etc. Believe me you can do your thing and do it well. I know you can and so do you. All you need is that push and like I maybe some chocolate (or something that is sweet in your frig or cabinet) lol You take care and know you are more stronger than you know or you wouldn't have made it this far. Just believe in yourself :)
Hi Lauren, I read your comment and felt compelled to write a response, as we are both similar and you are considering a medical career.
I'm 23, a college student with a BS in life sciences and now I'm training to be a nurse. I got diagnosed with E last year, during my "year out" - I had abnormal EEG and allergic reactions to low dose Lamotrigine that brought me out in a rash.
There is an improvement to many E cases can get a reasonable level of seizure control. You need the right medication for YOU - don't be afraid to change doctors if that is what it takes. In my opinion, and other professionals I have spoken to, your level of seizure control is not really acceptable. I know sometimes it is impossible to get it perfect, but almost always a level of functioning should not be out of the question.
It is 14 months since I had a seizure and I have been taking Keppra. They have even said to me that I can repeat my EEG and if it has settled down I can begin to slowly come off all medication (as long as I can stay seizure free for 24 months). I am studying and taking placements in the hospital alongside other doctors and nurses. When I did my first degree I was not having seizures so I was working quite a lot in the evenings. This is the only sacrifice I have made because I don't have the time and I want to keep my life as stress-free as possible to settle it down.
I'm sorry to hear you're having a bad time of it, but maybe start looking into alternative Neurologists. Some are prepared to take a chance and some are not - but the idea is to strike a balance between seizure control and side effects, and it sounds like this is not being done for you. Unless you have been through everything else before.
I live in London so have access to subway transport, but is there no way to live within walk/bus ride to your school?
Lauren! I have spent the past year looking for you! Your tag line is something my 21 year old daughter describes her situation for the past 2 years. She was going to University and during her summer break after that first year she had two grand mals. By March 2007 she was having more than 300 seizures a month! Since then she has had two brain mappings, two surgeries to remove 80% of the right frontal lobe, a VNS implant, moved to a wheelchair and a hospital bed for safety and will by the grace of the gods receive a service dog hopefully next month. Even though she is taking 4 anti-seizure medications she is still experiences 50+ seizures a month.
Hon, she was on her way just like you were and then you both hit a wall! One that isn't just made of wood but concrete! I remind her of the phrase she has always loved and is now a tattoo on her ankle... "Carpe Diem"... Remember to seize the day!
She has many dreams and it sucks that the path chosen changed and now is rocky as hell. But the path does continue and meeting personal goals, whether large or small, will get you there! Back to remembering her dreams of a good and long future.
As I said, I have been searching for someone who shares my daughters ideas, views, age, similiar situation, etc. If you would be interested in talking to her please email me at kthorpe2007@yahoo.com
Hang in there. Kim
I started having tonic-clonic seizures when I was 17 (now 29) & my doc didn’t seem worried about them and my DL because they were at night. Every time I went to that office I was scared to death that they would take the only thing that gave me the power to run from all the craziness. I was completely exhausted every day & made it difficult to hold a job or even a friendship with those that did not understand. Please, DO NOT give up! I had my surgery 12/07 & everything is a bit scary now that I have to live in reality..lol.... The possibilities are amazing, just as for me, there may be a chance you can walk away from it all - except for the experience.
If you want to talk...
jellybean957@hotmail.com
I appreciate everything you all had to say - Muffie - I'm going to call my schools disability office today and see what they will do to work with me...I don't know what I would do with out this site...it's keeping me sane knowing there are people out there that can relate to me.
I was in the Navy when I came down with the big E and they discharged me. I started college. The no-driving thing sucks, especially when there's no buses. Then I discovered something called general public transportation available to seniors and disabled people. It's those funky looking bus/van things that almost every community has, rural and urban. You can only use them if you're a senior or disabled. They pick you up at your house and drop you off at school, then they pick you up at school and drop you off at home. Downside, you've got to work with their schedule. Upside, you can go to college. Even if the GPT isn't available, there's carpooling. There are bicycles. There are dorms.
My neuros have been trying to convince me that I can't go to college for years because I have generalized intracticable epilepsy. That means that I have grand mal seizures and petite mal seizures (or whatever they're calling them this year), they have no idea why, and medication doesn't control them. I picked up my first bachelors in May of '08, I'll get my second in May of '09 an I'll start grad school for my PhD in August of '09.
It's tons harder with epilepsy than without, but it can be done. It meant changing my major a few times until I found one I could do well with. It meant tweaking my career plans. It means seriously managing stress through diet, sleep, and exercise. You know caffiene? Don't do it. It's a college student's best buddy, but it's an epileptic student's enemy. You don't get sleep, you have more seizures. Caffiene at the wrong time and the body isn't going to sleep. I've been to a large state university and a small one. They both went out of their way to work with my disability. In one semester, I took all of my tests through the disability office's testing center because I was afraid of having seizures and disrupting everyone else.
The neurologist's job is to make you stay home where you're safe and can't get hurt. The medical profession sees your epilepsy very simplistically. You're sick or you're cured. If you're not cured, you're sick and must make sure that you're safe, taken care of, and do your best to work with them to become cured. That's the paradigm of allopathic medicine, of which neurology is a part of. The problem with that is that it's very easy for them to inspire fear and strip away confidence and ability to live out a good life despite obstacles even though they only want to help you.
Between the doctor, the college's disability office, and yourself, you can decide how much you can take on. Maybe you can't carry a full course load like you used to, but if you can take two or three classes a semester, you're doing something about your future while you're working on controlling the epilepsy. It took six years for my first degree, including a few summers, because I had to pare down to 8 credit hours a few semesters. I couldn't handle more and expect to get good grades and take care of myself.
It can be done. It can be done now. It can be done forever, even if your epileptic situation doesn't improve a lot. What it takes is for you to decide what you want to do and then to find a way to accomplish it. It may require a lot more flexibility than you like, but life is like that for everyone, not just people with epilepsy. For me, I had to give up computer science and physics for sociology and english. The math was too stressful to learn, no matter how much I love it. I like sociology. Not as much as physics, but it's still a good place to be. I still read books on physics, but the stress isn't there anymore and neither are the seizures. After that, it was a matter of taking on classes slowly, two the first semester, then four a semester after that is my stress limit. You'll have your own. Working with the college's disability office is important and keeping your professors informed of what's up is just as important. Unfortunately, I couldn't say "I'm disabled, you have to accommodate," and leave it at that. They had to know what to do if a seizure happened. Seizures were public events, and they had to keep the class calm. They had to know what was going on when I missed class, missed a deadline for papers or homework, or, most importantly, why mid-terms and finals were guaranteed to set off required ADA accommodations. I did all of this while maintaining a part-time job of 20-30 hours per week and being a wife and mother. I'm 36 years old.
Talk to your school and find out the public transportation available to you. Once you've got that info, then visit your doc and see what s/he thinks about you trying a few classes out this semester.
i started having seizures when i was 20 and in school. i actually had to take some time off at the time because the school i was attending did not offer internet courses at the time. but now im finishing up my education with just one yr to go because i have spent the past 2 yrs taking classes online. i wasnt able to drive for 3 yrs because just when i thought i had my seizures controlled i had another one and my dr started this policy that for every seizure, you lose ur license for 2 yrs. i have only been back on the road and able to work since this past june and finally feel completely free. i know things seem almost hopeless now, i felt trapped and as if i had lost my identity because i could no longer do the simple everyday things for myself. and being a very independent person, that is by far the hardest thing i have ever been through, worse than the seizure itself. now seven yrs after i first found out that i was epileptic, lifes good and if it wasnt for the occasional pain in the ass EEG and daily meds, i wouldnt even know i had seizures. it is important to get a great dr, you go through a lot in the beginning because of the initial shock and realization that life will be different, so you need a dr that will grow with you. i have become very close to my neuro over the past few yrs and couldnt have asked for a better person.
your life is not over, niether is school... online classes are very much an option and better than sitting around the house doing nothing, believe me i spent a lot of time doing that before i started back to school. if u think u cant afford it because of not working you dont have to pay back loans until you grad... unfortunately im going to have a few of those to pay back... but it will give you a sense of accomplishment in ur time of feeling dependent.
tomorrow it's going to be 6 mths w/o a sez.Now I can start the wheels in motion to drive again. I don't know how long that's going to take but I can start.I'm 54 and I have to go through to whole thing like I'm a teenager again. Don't ever give in and don't ever give up.
Hi Lauren,
I can really relate to your post because when I was twenty two I was diagnosed with epilepsy and in college. I had no license, no job, and for the first time in my life I found school a challenge. It was very difficult to say the least. I wish I could say that there is an "end" to epilepsy, but as far as I know, there is not. Like many other conditions, it is a chronic condition that is managed, not cured. Of course, this does not mean that you will never be seizure-free. It just means that in order to get and remain seizure-free you may have to take medicine, visit the dr., etc. After several years of experience with seizures, my only advice is to make sure that you are going to a dr. that is appropriate for you and has experience with treating epilepsy. And, make sure that you are doing all that you can in life...get the support that you need to reach your goals. Epilepsy does not have to be the end. You are the same person you were before your diagnosis. You may just have to work a bit harder to achieve your goals and the independance that you want. How many seizures are you having, and what kind are they? Have you contacted the epilepsy foundation in your area?
Thanks for your kind words I appreciate your response. I have tons of support luckily, from my family and friends. I just hate relying on them for rides and etc . I am a fiercly indepenent person, so I feel nearly debilitated right now. Anyway, the main reason I cannot drive or continue my life right now is because I have myoclonic seizures during my sleep therefore I do not get adequate rest which results in simple partial seizures during the day. I am currently on 250mg of topomax. I was on Lamictal I developed a nasty rash at 200mg and had to be weined off 25mg a week. I haven't contacted the epilepsy foundation in my area, what will that do??
Lauren I know exactly how you feel... I was diagnosed with Jacksonion Epl when I was 12, and barely had any seizures whatsoever (1 per 3-6 months), then when I hit my second year (age 19) at Uni things got out of hand and i was re-diagnosed with complex partial epilepsy from the right frontal lobe. I was in my 3rd year of engineering (1 to go) and then had to change directions as I became a occupational health & safety hazzard...... Anyhow I switched to Business Management - but really want to do Event management now, which is a big doubt as I will prob scare of any potential customers if & when... I was on Tegeratol for years, but then started getting really nauseous, then switched to Keppra - got MAJOR mood swings, and now I'm on 500mg of Lamictal / lamatragine....and not much help.
Point is, I've been through this the last 3.5 yrs and am now on my way to consider surgery in November. Hopefully that is the answer to my prayers, and I hope that you can find something to hold onto... Look into your local council. Our Goverment has a scheme where you get $2 taxi rides to your nearest shopping centre and half price fairs in general if you qualify (disability pensioner) - It just gives you a bit of freedom & independance and a chance to get out of the house.
wow $2.00 taxi?!? that would be awesome I don't even know where I would inquire about that though. where do you live???
The epilepsy foundation can provide you with information if you need it, especially about drs. in your area. I was under the impression that simple partial seizures do not affect a person's cognition in any way. Therefore, wouldn't it be possible for you to drive while having simple partial seizures? Just a question on my part. I know it is really difficult relying on someone else for transportation, and hopefully your situation will improve soon.
I know exactly how you feel. I was diagnosed with petit mal seizures my sophomore year of high school, right before I could get my driver's license. I was miserable. Who wants to ride the bus to school their whole junior and senior year of high school? Needless to say I got rides and did get my license. However, I was seizure free for awhile so my dad bought me a car, not even a month later i had a seizure while driving and i hit a telephone pole and flipped the car. I didn't know the car was upside down until I got out. I have no memory of the car hitting the pole and flipping over. Thankfully I'm ok and I walked away from it, but since then I havent been able to drive. I did hate high school but I survived. I'm not 20 and I couldn't be happier. I still don't drive but I don't need to. I go to school and work in the city and I love it. I walk everywhere or take the trian. i dont' need to count on anyone anymore. Now i'm scheduled to have surgery on Sept29 to hopefully get rid of the seizures, but even then i don't plan on driving much very soon. Besides, look at the bright side, gas is expensive, insurance is expensive, cars are expensive, when you have other options it's not really that big of a deal. Good luck though and I hope things get better for you.
Angie