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Teeny

Teeny

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Hi All,
My name is Christine, but I have been called Teeny all my life. I am 39 years old. I was diagnosed with Epilepsy (simple partial seizures with secondary generalization) about a year and a half ago..(odd). According my Nero, i was born with it possibily. She also says that I am not coping with it very well and need to find others that I can talk to about it. SO, even though I try not to talk about it or even acknowledge that I have it.. I will give it a try. When I was younger I would have odd shaking in my hands, day dreaming, lots of dejavu and dizziness. I was told that it was Vertigo. Never was tested until I was 37. My first EEG came back that I had Epilepsy. I have always just dealt with the "shaking" and dizziness, even fainting. I thought that it was normal with "vertigo". Anyway, loooong story shorter. I now know that I have it. :/
I was first put on Topamax for about 10 mths. It helped my migraines alot! but it wasn't doing much for my seizures. It actually made them worse for a while. Then once we found the dose I needed I became a zombie. I also had heart palpatations, night terrors, nose bleeds, ears ringing, major weight loss form 140lbs to 116 in about 3 mths. I had bone and stomach pain. It was terrible. Well after refusing to take it anymore, I am now on Lamictal. I just started it. I was also given B-12, folic acid and citracal to take. The dr says that I need it. I had a hysterectomy when I was 29 and no hormone replacment. I am a single mom of 2. I work, I drive (because I can feel my seizures come on) I refuse to be stopped by this, I will not feel sorry for myself. I do what I need in order to take care of myself, but I also choose to pretend I don't have it. I feel like I am in a daze and just going by what the dr. says. I don't like talking about it because it makes me mad. So this is my story and now I am done talking about it. Thanks for listening
 
Hello Christine,
You shouldn't drive your seizures could come on at anytime, they can change so your not coping well able your epilepsy.A simple partial seizure can always turn into a toni-cclonic sz (grand mal) You say you don't like talking about because it makes you mad epilepsy can happen to anyone.I've had epilepsy 50 years but that's life but if you have a seizure and don't feel it come on you can hurt your yourself or someone else.
I've never driven. Your in denial.
 
Teeny

You are very welcome to C.W.E. You have to accept you have it and it is not your fault, the thing is just because you were diagnosed with it means you now know the problem this does not mean it rules your life, quite the opposite.
 
Hi Teeny

Welcome. I jumped in here over ten years after I was diagnosed. I like being able to talk to these here folks. Deja-Vu and dizziness is very common during simple partials and the feeling is very familiar to me.

I am controlled and I live a very normal life and I hope you are lucky enough to do the same.
 
hi teeny, and welcome to the best place.

i understand alot of what you say, you're not alone. i wasn't in actual 'denial' after diagnosis, but didn't really 'take it in.' i knew i had epilepsy and took my pills, went to appointments and took tests, but something about it stayed surreal, for almost 5 years.

then at 11 days shy of 5 years grand-mal-free i woke up in a ditch, surrounded by cops and first aid, fire truck with lights up on the road. that day did it. turned my thoughts and feelings pretty much 180, realized just how dangerous and at risk our life is. unfortunately E is incurable, so the sooner one accepts and deals with the reality the better, pls take our word on that. acceptance and moving forward can actually, tho scary at first, be quite soothing. it's facing something that has changed your life, and if you take control of it rather than it of you it brings much self-strength.

taking charge of our epilepsy and its issues is quite healing... mentally. pretty much nothing worse than feeling out of sorts and in fear all the time. for almost 20 years i too have suffered from simple partials with secondary generalization, and it is one part of the condition that has a silver lining, aka having time to get somewhere safe.
re: driving. did you lose it for a year after diagnosis? or 6 months? i assume you've been grand mal free during that time so legally got it back? i have two thoughts on this;
as long as you're abiding by the law (which means telling your doctor about every grand mal as well as not driving until cleared to), it's all good.
i do however disagree with belinda. while yes it's true that a seizure can turn into another at any time, that does not mean it WILL. i'm allowed to drive with simple partials with the trust that i'll pull over, the law states no driving if they're complex or grand mal. if you're legally allowed, and you follow that 'pull over' rule there is nothing wrong with that. we have to have somewhat of a life, and those of us legally allowed to drive with seizures under control have every right. sorry for anyone that was never given that option but that does certainly not belong on our shoulders.

the only dif between us is that i was misdiagnosed with ptsd the first 9+ years after my first simple (at 15). diagnosed with E after g.m.'s started at age 25 and i never put the two together. unfortunate, b/c that day of the one and only grand mal driving I HAD had a simple, going up the hill, but thought it was a ptsd attack so kept driving (were scary but had never affected my consciousness). bam, grand mal within about a minute, and had i been diagnosed properly i would have pulled over in time.
point being that simple partials give us that option, and as long as we use it we're doing the right thing. ;) ironic as life is, i found out not long after it was seizures and never ptsd... then never had another grand mal while driving.
life never ceases to surprise us, that's for sure.

:hugs:
 
Hi Teeny and welcome to our forum,

Sorry to hear of your diagnosis at your age. It is difficult to deal with at any age. I was diagnosed at age 22. So I have lived with Complex partial seizures and Tonic clonic, both starting with simple partials. I have two grown children that grew up witnessing many, many seizures of all types. I tried to educate them and their friends about E, just to be safe in case of emergency, which did happen on several occasions. So I do hope you stop pretending that this brain disorder does not exist. Kids need to know what to do.
Here in the U.S., we do have laws which vary from state to state. A person needs to be seizure free for a certain period of time, regardless of the type of seizures, so please be very careful. I had a break-thru CP seizure on Xmas eve while driving. Thank god on one was injured. And I will NOT be driving for a long, long time. I talk about it to help me deal with the anger. So maybe you should! Being angry is not good for you!
 
Hi Teeny,
Welcome and I totally understand where you are coming from. I have been taking AED's since I was I guess diagnosed at 20. 30 years ago. I'm still really confused by a lot. I got on here to try and find answers. Had things pretty much under control until a year ago and I started with tonic seizures. I have changed meds. Was on Dilantin. Now taking levetiracetam (keppra). I have lost a lot of weight and stay depressed moody and easily irritated (anger). Lost one job in past do not want to lose another so I come to wrk and don't talk about it. My family really doesn't want to talk about it either. After starting keppra no more problems but I just really sometimes don't feel like I have a problem or do I just keep taking this stuff that makes me feel as it does. I even wonder if being on the Dilantin for 30 + yrs might have started the trouble a year ago and if so. Then maybe I really could do without meds.

Sorry for the long story but I do understand your feelings. My husband left and my two kids are grown and on there own. Not going to end up a burden on anyone. Had a nurse in the ER tried to make my daughter feel bad about me living alone. I do just fine on my own.
 
Hi, and I get it. For several decades i had simple, temporal seizures with absences all the time. And crashing cars when i would be absent for just a few seconds. I also never, ever talked about it until the last few years and then i started having tonic clonics randomly. I am here to share and learn. I love it. this is a safe place and you will not be judged. I hope you find comfort soon.
 
Welcome Teeny,
This place is awesome! We all know where you are and have been there. Speaking for myself, just do what YOU think is right for you. No one knows your body better than YOU!
But do accept reality and try to deal with it as best you can. It is a tough road but you can do it.
M
 
Thank you to all of you. I appreciate it more then you know. I think I may be able to do this....talk about my E. Its going to take somtime but you've all helped me! Thanks. Ps. And yes, i am legally driving ��
 
Hi!
I'm new here too, but I know about the whole medication making you a zombie thing- I was diagnosed at age 4, so I know it all! Stay away from Dilanton (I couldn't deal with tempetures over 90 faregheit) Ask your Doctor about Vimpat and Clonazapam. They are the newest and best. I went from zombie to alert within a week. What is your dosage on Lamictal? Oh, as for friends- it's okay to tell them, if nothing else you will get to know who your REAL friends are!
 
hi teeny,
ok as a veteran i'm going to agree and disagree with a few things here (btw, am soooo glad you're finding cwe helpful, i totally get it, it made an entire world of difference for me joining here and opening up).

doing what you think is right for you. yes! but only to a certain degree. answer a few things here:
-was, and when if, was your license taken away? did your neuro tell you why and for how long? standard is a minimum of 6 months, some states/countries are a year or better. also, when we're diagnosed we're off the road, that's standard regardless. so if it's been awhile you got it back? ok, but now you've changed meds all of a sudden. what did ur neuro say about that?
standard in ANY country when changing meds is off the road for awhile, some are the traditional seizure time, some are depicted by your neuro, but at the very least is a month or more. what did they tell you?

-'stay away from dilantin but ask about vimpat and clonazepam.' woahhhhhh!!!
this is a complete personal opinion and not fact in any way. tbh if you were able to google
coping with epilepsy members' thoughts on vimpat
Click to expand...
you'd find quite the opposite. tho dilantin is one of the oldest epilepsy drugs on the market (phenonbarbital, dilantin, and carbamazepine the top three oldest), it still has helped the lives of MANY. yes it has long-term side effects, but how is that known? b/c it's over 60 years old and there's research to no end, that's how.
vimpat has only been in north america about 5 years... which is NOTHING compared to 60 years. and MANY people have come to hate it for it's unbelievable side effects. though i am one of them, i'd still never tell you to 'stay away' from something.
tbh i don't compliment it, ever. but, it is true that it works for some like magic with no side effects, so like anything, trial and error. i disagree completely that vimpat is among the best, and the main reason i say it very 'out loud' - b/c it's the majority.
not to say it won't work for you (ratio between seizure control / side effects is different for all of us), however, pls dont 'believe' the idea that 'newer is better than older.'
sure... vimpat cut my simple partials down by a few a week. BUT. i felt like a looped-out drunken retard that could only work half days before having to go to bed. if i didn't go to bed, i walked into the wall. on a LOW dose. and this is a common comment, not just mine. lowering the seizures was nice, but tbh. after surg i was on three drugs and had to start getting off one and hands down my choice was the big V.
 
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Ok, to qtown girl and anyone else.
I have NOT had my liscense taken from me. My nero said that he has to tell me that legally I should not be driving, BUT he didn't think that I was harm to anyone at this time. HOWEVER, I usually drive to work (5 mins from home). My boyfriend drives everywhere else. So please stop pressing me on this issue. I know I should not be driving at all. Also, my nero is the one that changed my meds. They weren't changed all of a sudden. He again told me that I should not drive for 6 mths after a seizure. So I know all of this and deal with it in my own way. I will obey the law to the best of my abilities. I do HAVE to work in order to get my meds and take care of my family. Thanks for the info on the other meds. It may be helpful in the future.
 
Teeny, Welcome to CWE. I'm sorry if you think people are harassing you, but many here have suffered accidents as a result of seizures while driving after having their licenses suspended and know first hand the danger of it. Yes not having a license is extremely difficult but people can and do find a way to cope. According to the law, if you have had a seizure in the last 6 months, you are in fact driving illegally (which is what your neuro was telling you). Your location says portsmouth so i looked it up:
If you have a mental or physical condition that may impair your ability to safely operate a motor vehicle, even temporarily, you must provide DMV with a medical statement from your physician, physician's assitant, or nurse practitioner. Some of these conditions include:
Level of consciousness
Seizures
Vision changes
Impairment of judgment
Loss of motor functions
DMV's Seizure/Blackout Policy, established by our Medical Advisory Board, states that a person must be seizure-free or blackout-free for at least six months to establish medication and regain proper medical control before driving. If a person is currently licensed and DMV is notified that the person has experienced a seizure, loss of consciousness or blackout, DMV will suspend the person's driving privilege for a period of six months from the date of the last episode.
DMV will evaluate the medical information to determine if a driver's license may be issued or restricted.
Click to expand...
http://www.dmv.state.va.us/drivers/#medical/spec_restrict.asp

If you were to have an accident as a result of a seizure, particularly if your neuro has documents with you stating when your seizures are, and or other people witness them, you are very likely to not be covered by insurance, and you could lose everything. Not to mention the possibility of hurting yourself, your children or others. Scary. If you know you should not be driving at all, then why would you risk your and your kids lives and the lives of others?
 
well put chmmr.
also to add (and no my dear we're not trying to upset you, these are vital pieces of information with epilepsy, this is simply to help)- if one is driving when still within the 6 months and you get caught (i've heard DMV can be pretty ugly), your doctor has the right to take away your license for life.
and if it's not that bad, they can say however long they want. or, make it indefinate until they feel safe one is going to follow the law. it's hell, but is what it is.
i wouldn't risk it my dear, for your own sake.
 
Lots of great info, you guys! One thing I would add about the newer meds: When my neurologist tells me about them he usually says that he would not recommend them for his patients unless they really wanted to try something different. He would rather let a few more years go by and a few thousand more people experience the side-effects before he gives them to his patients. I like that attitude, especially since there are so many AEDs that have a well-known history and track record.
 
chmmr said:
Teeny, Welcome to CWE. I'm sorry if you think people are harassing you, but many here have suffered accidents as a result of seizures while driving after having their licenses suspended and know first hand the danger of it. Yes not having a license is extremely difficult but people can and do find a way to cope. According to the law, if you have had a seizure in the last 6 months, you are in fact driving illegally (which is what your neuro was telling you). Your location says portsmouth so i looked it up:

http://www.dmv.state.va.us/drivers/#medical/spec_restrict.asp

If you were to have an accident as a result of a seizure, particularly if your neuro has documents with you stating when your seizures are, and or other people witness them, you are very likely to not be covered by insurance, and you could lose everything. Not to mention the possibility of hurting yourself, your children or others. Scary. If you know you should not be driving at all, then why would you risk your and your kids lives and the lives of others?
Click to expand...

Does this mean if you only have simple partial seizures you can't drive? My neuro has never said anything about me driving or not driving.
 
nope, that's not what it means.
simple partials do not bring any loss or change of consciousness, so it's not considered a driving risk. however, they can turn into another seizure at any time, and if that happens the loss of license is expected, and is the law.
 
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