Newbie with question

[darkdreemer]

Hello all!

I have recently been diagnosed with "seizure disorder"...from what I understand, that means Epilepsy?? Please correct me if I am wrong. There are so many questions I have but so too dumbfounded at the doctor's office to even ask. I have, obviously, called my doctor back to ask these questions but he has not returned my calls.

I am a 30 year old woman with a husband and 2 wonderful children. I have had 2 seizures in the past month and half (the first ones in my entire life). The doctor stated that I had abnormalities in my left temporal lobe on my EEG. Basically, he said that either I can go on the meds or have my driver's license taken away and we can see if the seizures subside. I asked his advice and he opted for the medication. The doctor placed me on Trileptal at 150 mg twice daily and stated that he would like to get me up to 450 mg tablets twice daily.

Here are my questions...any advice is greatly appreciated.

Do I have to notify the department of motor vehicles? I live in Pennsylvania, USA - btw.
Will I be on this medication for the rest of life?
Is there a criteria for how many seizures are experienced in a certain time period before they diagnose you as an epileptic?
Should I get a medical bracelet?
Is the medication supposed to make me feel "out of it" and kind of foggy?
Is it true that the "aura" by itself can be considered a seizure?
Has anyone had any experience with family members not believing your diagnosis?

I am sorry to seem so needy right off the bat - I was diagnosed yesterday and I guess I am just nervous...

Thank you again for all of your time!

 

[epileric]

Hey DD

Welcome to the site. Here you definitely are in good company. To answer your questions:

Seizure disorders usually means epilepsy though I believe autism & couple of other illnesses might be considered seizure disorders as well.

I can't help you re. your state motor vehicle question. Maybe we have someone else from Pennsylvania here that can help.

Nobody really knows what their seizures are going to do. Usually once one has seizures they're hard to get rid of but some people have figured out what diets/activities might stop their seizures & it does occasionally happen that peoples seizures suddenly stop as unexpectedly as they started.

Usually to be medically defined as "epileptic" one must have 2 or more seizures.

A medical bracelet is everyones personal choice. Do you feel one would help you or not. You might want to check out this thread http://www.coping-with-epilepsy.com/forums/f27/medic-alert-bracelets-do-you-wear-one-1003/

All anti-epileptic drugs have side-effects but everyone reacts differently to them. The side-effects of one drug might be worse than for most people but the side-effects of another might not effect you at all. The problem is that most AEDs work by slowing the firing of neurons (since a seizure is a misfiring of neurons) so the side-effects are symptoms associated with slower neural firing like fatigue, slower reflexes, forgetfulness & ummmm, I can't remember the others.

Yes, an aura is a seizure. I know that when I read some people describing their auras here I was surprised that they described my seizures.

I was lucky because my dad was in the medical profession & recognized a seizure right away. Not everyone here is as lucky as me though.

I would also suggest you keep track of your seizures on a calendar. Also when & what you eat, when you sleep, your menstrual cycle & briefly what you do, especially if it requires a lot of exertion. You might find what is likely to trigger your seizures.

And please know that there's no need to worry about feeling "needy". So many people here have gone through what you're going through that there's a lot of understanding around here. Meanwhile get comfy here & check the place out.

 

[neilB]

Hi,:hello:

There is a link somewhere in hear with a listing of the states and the laws (some are worse than others). I'll see if I can find it. There is also a link on the side effects of various "E" medications (now if I can only find them!). But welcome and you'll find a lot of VERY helpful people here!

 

[Endless]

Hi, Darkdreemer,

Welcome to CWE!

I'm so sorry about your seizures. The time after I was first diagnosed was a scary and confusing time for me. The people in here educated me, supported me, and pretty much got me through it.

Lots of questions (which is good!), and I'll try to answer them all the best I can.

You can get the text for the driving laws in your state by going here:
http://www.epilepsyfoundation.org/living/wellness/transportation/drivinglaws.cfm

You are lucky your doctor said if you go on medication you won't lose your license. According to the above site, it looks like pennsylvania is a mandated reporting state. That means your doctor must report you if you had an altered consious seizure, with some exceptions. What type of seizure did you have? You must stay seizure free for 6 months before you get your license back. See the link for more info on exceptions to the rules.

There are many of us in here who don't drive, and have chosen to keep our licenses and our auto insurance. Mostly because of how hard it is to get them back. What you choose to do is really up to you.

Seizure disorder... yep, that's epilepsy in some cases. In other cases it may be caused by a physiological problem - like mini-strokes. The docs usually don't say epilepsy until you've had at least seizures, a positive eeg test result, and have ruled out other possible causes. I googled and didn't find any official criteria.

Will you be on the medication for life? It depends. Some people are able to go off. The earlier you are diagnosed and treated the greater the likelihood you can go off some day. For most of us it's for life.

Should you get a medical bracelet? I wear one. But not everybody does. Look at this string for a good conversation about it:
http://www.coping-with-epilepsy.com/forums/f27/medic-alert-bracelets-do-you-wear-one-1003/

Yes, medication makes you foggy. I was on trileptal and had to go off due to a serious side effect. Look at drugs.com to see the possible side effects. Everybody reacts differently to each drug, so you won't experience all of these side effects, just some. Some people don't experience side effects at all. I want to say, though, that difficulty thinking and remembering, emotional effects, tiredness, are pretty common side effects for all AEDs.

Some side effects go away, some don't. Sometimes we have to choose between seizure control, and whether we think we can handle the side effects (if the side effects are really bad). Sometimes you have to try more than one drug until you find the right one, sometimes the first drug is a winner.

Yes, an aura is a seizure.

Your last question... it's really common to have people not believe you. There are umpteen posts in here about that very thing. And yes, at first my mom and my sister didn't believe me. Especially since I have temporal lobe seizures and they can be pretty wacky. They just thought I was mentally ill. My sister was downright hostile about it. She still doesn't believe me. Also my sister's children (my neices) think I'm nuts, though my other neices understood and have loved me through it all. But now my mom has come around. My aunt and uncle always understood, and supported me. So did my friends. So I take the compassion from those that feel it, and avoid the rest.

Hang in there. Everything gets better over time. Getting on the right meds will help.

 

[RobinN]

Hi darkdreemer - Welcome to CWE
Sorry to hear of your health issues. A bit of a shock I bet.
My daughter is the one that has had a seizure disorder so my answers will be taken from that perspective.

I do not know the driving rules in Penn, they tend to differ from state to state. In most it is my understanding that the Dr is the one that must report it. Here in CA you must be seizure free for 6 months. My daughter has not been able to get her license, because I want her to be seizure free for 1 year. She has hit the 6 mo. mark though so we are hopeful..... and she is med free.

From what I have witnessed from reading others life stories, once you begin taking meds you most likely will be on them or some form of them for life. The medical community seems to only feel comfortable treating those with a seizure disorder while on meds. Occasionally people improve their seizure threshold and can reduce or eliminate the meds. However, it is my belief that these being such strong chemicals that change brain function, your body has difficulty without them. (my opinion)

Most often after two seizures it is classified as Epilepsy. But that is only a label. Seizures are only the symptom. There is a reason your seizure threshold is lowered. It is my belief that for many (not all) cases you can work to raise your threshold back to a point where the body no longer seizes. In my daughters case it has meant making nutritional changes.

It is a good idea to have a medical bracelet. For my daughter though, I haven't seen to this point that anyone has actually used the information (or looked at it). Now that she is 18 and moving around the community on her own, they might. So I need to replace the one that we got her when she was 14. I think I am afraid that if I consider that again, it might jinx her.

Yes most medication does alter brain function. It is very strong "stuff". Some have said that feeling does go away, others can't seem to find relief. For my daughter the quality of life spiralled downward quickly. That was not acceptable to me. We tried four meds with her (one at a time) and NONE gave her seizure relief, and they ALL gave her awful side effects. That is why I looked for alternatives. I am sorry at this point in time that I accepted the meds. But I guess looking back it allowed me to at least say to the doctors we tried that route. Now you need to follow my instincts (which have proven to be right)

It seems to be understood that most auras are a form of a seizure. There have been few here that report their doctors do not agree with that, but it is still an abnormal brain function, and needs to be addressed. Just as migraines are now classified in the seizure family. There are also psychological forms of seizures, which the patient does not have control over, yet they too need to be addressed.

Many report that family has been an issue for them from time to time. I found that the general public only knows about seizure disorders from the movies. There is a lot of improvement needed in educating the public. The way I have dealt with this is to not focus on what others think. If it was positive, and moving me toward answers, I will listen. If it was negative, I said thank you very much and moved on. I have continue to research and learn, but it is hard to find others with the same scope of knowledge to discuss this issue and brainstorm answers. That is why a forum such as this is so valuable.

Your best friend will be your journal. I use a blank calendar. I think I will scan this and put it on Rebecca's story (found in my signature of this post) It will give you an indication as to how I record the activity.

This is getting long... but what you have to remember is that you went for 30 yrs, 2 pregnancies without having seizures. For some reason your seizure threshold is lowered. It could be an "abnormality" though that can not be found on an EEG, so that would give me reason to suspect his information. (yes there are doctors that know not what they speak). If you have had an MRI, then you might see an abnormality. My daughter has one on her right frontal lobe. It is called a "birthmark". Some doctors point to that, others say it is not causing the seizures. So I moved past that and said OK it might increase her chances to having seizures, but she was seizure free for 14 yrs of her life. What can I do to improve her daily life activities to raise her seizure threshold back to where it was before the first seizure. I kept coming back to nutrition.
Low blood sugar has been a target of mine, and it has made all the difference in the world. However it doesn't stop there, because one needs to ask why is the body responding this way. What can I do to improve the situation. It makes sense to me to give the cells what they want, and that is the best nutrition possible in order to find the energy needed to function. Unfortunately meds alter this process.

I know you will receive a lot of info here to digest. Take your time, and make yourself at home.

 

[darkdreemer]

Thank you all SO much for your kindness! I have answers for some of your questions, but I also have more questions to some of your questions! LOL

My doctor finally called me back and stated that what I have is called Partial Epilepsy with Impairment. Now, I am not afraid of google and I do have a firm grasp on medical terminology (so I like to think)...and basically what this tells me is that I have partial seizures (meaning involving only one part of my brain but not insinuating that they cannot cross to other regions) and sometimes I lose consciousness.

I have had an MRI as my mother has had several brain aneurysms, but there was nothing remarkable.

Endless - I too have temporal lobe seizures and out of the two I have had, they were both EXTREMELY different from one another.

I am very thankful that the cloud has finally lifted from the medication I took this morning, but I am sure it will be back tonight and tomorrow morning.

Thank you for all of the resourceful links!

If I am reading your posts correctly, is it safe to assume that this medication may not stop my seizures? I may have to try others or play with the dosage??

I have to be honest with you, despite the differences in both my seizures - there was one similarity....they are scary and uncomfortable and I would rather never have another one!

It makes me feel better that I am not the only one having issues with my family but at the same time saddens me that it has to be this way. My mother-in-law swears that because I take percocet for my migraines and I took one (for a migraine) shortly before my first seizure, that this was the cause for me "fainting" for 5 minutes! She believes I need a second opinion and another EEG! It makes me so irate that some people are just so ignorant.

RobinN - I truly believe that the seizure in which I only had the aura, I knew it was coming and somehow willed it to stop on my own. It was the same feeling I had prior to my first seizure but not as overwhelming. Also, I do have hypoglycemia and the ambulance tech did say that my blood sugar was slightly low, however their version of low is 70 and that is where my sugar is on a daily basis. I don't begin having physical symptoms until it goes at least below 60. Plus, I had just eaten prior to that and was waiting for my food to digest.


After this LONG post - I just wanted to thank everyone again and I look forward to becoming a contributing member on your forums!

 

[Endless]

Hi, Darkdreemer,

Most people go off a medication and try another due to the side effects. Sometimes the medication won't stop the seizures, even at a high dose. In that case they do try another drug, or have you on more than one drug. Whenever possible they try for monotherapy, which is one drug at a time.

You can have an "aura" and never have a stronger seizure, like a complex partial (loss of consciousness) seizure. Sometimes it just doesn't progress to that. Mine do that quite often.

Yes, temporal lobe epilepsy is varied, and strange. The CPs upset me after the fact. I don't like the idea that I don't know what I was doing or where I was for a period of time. The SPs sometimes scare me, especially the fear seizures. Those are more like all-consuming, deer-in-headlights terror. Some of it, like Jaimas Vu, I'm completely absorbed in being puzzled, so no fear. I'm so completely imersed in it I don't even think "it's a seizure." That comes afterwards.

I'm sorry about your loss of consciousness - it means no driving.

 

[darkdreemer]

Yea...I am not sure how that works. I read the information in the link you provided but am not sure what is going to happen next...will my dr tell the department of transportation? Should I tell them? Will I just get a letter in the mail saying I can't drive any longer? Do you think my dr is crooked and won't tell the DOT?

It sounds bad, but I am not sure I want to ask him for fear he will then be obligated and I will lose it when I may not have had to...that is bad, isn't it?

I did look through the exceptions and I do not fit into any of them. My seizures came out of the blue and the EEG was abnormal.

 

[epileric]

It sounds bad, but I am not sure I want to ask him for fear he will then be obligated and I will lose it when I may not have had to

What you have to realize is that if you black out you do have to. The horror that can be caused if you black out & hurt not just yourself but your children if they're in the car & other drivers & pedestrians.

Also, if you get into an accident & don't tell & it comes out that you knew your insurance can cancel all coverage, even if it's not your fault.

 

[darkdreemer]

Yea...the more I think about it, the scarier it is. I think it just really hasn't sunk in yet (the whole epilepsy thing, I mean). I have only had one loss of consciousness seizure and one aura seizure...I guess it just doesn't seem like it is that prominent in my life.

 

[epileric]

I've had small seizures all my life. I've always been aware of what's around me & I never lost consciousness (or so I thought). One day I was walking down the sidewalk with a bus stop way in front of me. I had a very short seizure, just a few seconds. When I came out of it I had already passed the bus stop but had no recollection of it. I later learned that I do black out but part of blacking out is that one often isn't aware of the black out. The scariest incident for me was when I came out of one & was in the middle of a traffic intersection.

I'm aware now that I do lose consciousness but also that I may not be aware of it. Watch that the same isn't happening to you. If you lost consciousness once it's more possible that you could have the other time too.

I know it must be awful getting used to that thought. Having had seizures all my life I wasn't too upset when I realized what was happening though I can't say I was thrilled either.

 

[Endless]

You always have the option of JUST NOT DRIVING, no matter who you tell or what steps you take. Stick your license and keys in the back of a drawer. You could call and ask an attorney and find out the requirements and what you should do, if you are uncertain. The epilepsy society has legal resources.

http://www.epilepsyfoundation.org/epilepsylegal/legalinfoctr.cfm

Not driving stinks.

 

[reuben12]

I guess everyone has different ideas about the driving. I am new to it as well, and while I didn't report it officially (as for me it's a minimum of a year to get it back), I don't actually trust myself to drive. If for no other reason, I find that the altered level of consciousness from the drug side effects would make it entirely unsafe for me to drive.

I have parked my car, and changed my insurance to more of a parked vehicle mode (just told them I'm going to carpool for the winter). I gave my keys to a family member so that I didn't just jump in and try to drive one day while I was out of it (again, just from the drugs alone I'm afraid I would do something stupid). I gave them explicit instructions not to give them back for at least 6 months, and we will have to see how things are going by then. It's my understanding that it might take me that long to get things under control and get confidence back that I'm safe.

I do find it funny that everyone seem to think it can't be epilepsy, it must be something else. As I was a fit active male in my early thirties everyone just figures it has to have some cause other than just seizures starting. It's shocking the things people toss out there thinking it's a better answer than epilepsy. Like when they start trying to convince you you have MS instead of E as if that would make you feel better LOL

 

[darkdreemer]

I do appreciate all of your input!

I think the thing that gets to me is just that I have only had two seizures and they were both rather mild...as far as it goes that is. It just doesn't seem like it can be "E" to me. Obviously, there must be some explanation but that one just seems so permanent and ominous...no offense meant to anyone.

Reuben - I have only had one person disagree with my diagnosis thus far, but after that I am very hesitant to tell anyone else in my family. It is hard enough for me to swallow without them criticizing and patronizing it. How many seizures did you have before they diagnosed you? If you don't mind me asking...

I do not drive very often. I work from home and my husband is a stay at home dad. There is often no need for me to drive, despite the fact that it is stressful for me since we sold my sedan and purchased a lifted jeep.

 

[reuben12]

Luckily my friends and family have been very supportive, although there are a few family members that might never be told. Well I kind of skimmed over that as it doesn't relate too well to your situation. Mine kind of came on quick with 20+ seizures in the first 12 hours. I'm coming up on my one month mark now, and with meds I'm down to a few a week. Well, a few batches a week I guess. I was released from the hospital the first time as undiagnosed, potentially epileptic, but on readmission the next day they tossed the label on.

All these things make it clear that I have no choice to drive, but the med side effects themselves were the main reason I had made that choice in my mind. I guess I'm just the type of person that won't drive if I've even had a drink, so no way I could justify it with the way these drugs are making me feel.

p.s. I'm 33 now with no previous history, so I relate to a lot of the stuff you mention. It's hard to wrap a mind around this stuff out of the blue. I'd also call mine mild, but persistent. Well, except for those days on kepra, that was some scary stuff LOL

 

[huskymom]

Hello and welcome!!

I am pretty sure that all of us have had the same thoughts and questions when first found out about our epilepsy. I am 50 (hard to even type that number) and never had any issues until I was 48. Ended up going to the doctor when my memory failed all the time and couldn't keep a thought straight. After my EEG, which came back abnormal, and a few other tests, that was that. Now on 3 different drugs, and they seem to be working for the most part, but still have some break through seizures. I still drive, none of mine have had altered concieness (sp). Mine are mostly at night, but am finding some daytime things happening lately. I won't drive if I am feeling poorly. I have a question for you....after your seizures, do you have that "run over by a bus feeling"? I know when I wake up and have had one during the night, all I can manage for the day is to get to the couch and basically just sit there.

I wish you the best! You are with good company!

 

[darkdreemer]

Huskymom - Yes, I do get that feeling. I usually just kind of sit there blankly and stare off into space. I have tried to work immediately after one and it was extremely ineffecient (to say the least).

 

[Nakamova]

Hi darkdreemer --

The driving question is a tough one. In my case, I have tonic-clonic seizures, so uncontrolled seizures can be risky. Here in Massachusetts, you're required to be six months seizure-free before resuming driving. There's no requirement for the doctor to tell the state DMV, and I certainly haven't reported to the DMV myself.

Over the ten years since my diagnosis, I've learned that I respond well to medication. The times when I've gone off meds (under doctor supervision) is when I've been careful to avoid driving. But when I'm on meds, post-seizure I haven't always waited the full six months before driving again. I've never had a seizure while driving, but I've also purposely limited the amount of driving I do in general (home office, live near public transportation).

Since you have only recently been diagnosed, you might want to play it safe until you get a sense of how your seizures behave and how you feel on medication. I know it can be a hassle not to drive, and a risk to do so.

 

[Endless]

Hi, Reuben,

Your family suggested MS? Do they know the odds of someone having MS are 1 in 750? The odds of someone having epilepsy is 1 in 100 (1%). About 7 times more than MS. If you know 100 people, odds are you know someone with Epilepsy.

Great idea about the insurance. I hadn't thought of changing it to zero miles per day. I'm going to change it today.

 

[Ann T.]

Hi, Darkdreemer:
RE: Driving & your small seizures
Welcome! You are definitely in great company! Now, what I'm about to say may be rather blunt, and I sincerely apologize in advance to both you and CWE members. I'm giving you something to chew on/think about: I beg you not to be in the driver's seat when you are with your 2 small children because, if you happen to 'zone out' (what I call my seizures), you could put both your life AND their lives in jeopardy. I drove (in the driver's seat) with my sisters, 'zoned out', and they promptly took my license away. When I tried to re-new my license, the DMV officially took it away with 1 question: "Do you have a medical condition that would impair your consciousness behind the wheel?" It was extremely harsh to get it taken away, but I had an OMG mini-moment with the Man Upstairs: "Oh wait, I could spend time in jail for vehicular injury/manslaughter. Plus, I'd have to deal with all the legal issues that go with it!" To top everything off, I'd never forgive myself ever. Sooo...I balance my family's schedule with my schedule, and it's worked out fine since 1993. Take care, darkdreemer, and I hope I wasn't too harsh. If so, please let me know.