side effects?

[sillymissy]

Would you change your medicine because of side effects? I'm on lamictal and I have pretty much all the side effects. My mom thinks we should talk to my doctor about changing but I don't want to. I only changed to lamictal a year ago and since then I haven't been able to drive. If I change again then I still won't be able to drive!
Maybe I'm young and foolish but I'd rather drive than not.

 

[Endless]

Hi, Missy,

Your mom is right, you need to talk to your doctor. Some side effects are really serious, like a rash, face or lips swelling, sores, deep depression, etc. They would be a reason to change because you could get really sick or hurt.

Other side effects your doctor may decide are a grey area - they may not cause you serious harm, but they impact your life, and it's your choice what you are willing to put up with.

This is what I found for the laws for driving with a diagnosis of Epilepsy in Illinois:

State Illinois
Seizure-Free Period - No set seizure-free period
Periodic Medical Updates Required After Licensing - At discretion of Medical Advisory Board
Doctors Required to Report Epilepsy - No
DMV Appeal of License Denial - Within 30 days

Here's the link to look up all state's laws: http://www.epilepsyfoundation.org/living/wellness/transportation/drivinglaws.cfm

So it kind of sounds like it's up to your doctor. He's not even required to report your diagnosis and status to the state. He's the one you need to convince. It wouldn't hurt to discuss it with him before making a change, to see what his opinion is. You may be risking him insisting you switch meds, and that you not drive. You know your doc, so it's your choice. If it was me, I'd go in and hear what he has to say.

 

[Nakamova]

Changing meds is no guarantee that you will find something better, but if the side effects you're experiencing now on the Lamictal are intolerable, then it's worth discussing alternatives with your neurologist. Everyone has a response in terms of side effects, and also a different tolerance level. what's acceptable for one person can be a dealbreaker for someone else. If the side-effects are tolerable to you now, but might not be 5 years down the road, that's worth considering too.

Aside from meds, have you considered alternative approaches involving nutrition and neurofeedback? For some, these can result in a higher seizure threshold, so you may want to look into them with an eye towards reducing your Lamictal dosage. You can search for info and anecdotal feedback here at CWE.

 

[sillymissy]

When my doctor first told me I could not drive anymore he said he wouldn't report me to the state unless he found out I was still driving. That doesn't make sense to me now that I see the Illinois laws...

As far as treatments besides medication, my mom is all about not medicating anyone for anything but I don't know if I trust alternative methods. They scare me a bit!

The whole situation is just bothersome. Hmmph.

 

[seizingbeauty]

I understand where your coming from on this topic.
Personally, I had no one helping with these choises. I was 19, unwilling to accept that I had a condition that needed to be medicated and that with meds came side effects. I went through a bunch of meds and side-effects, one day said NO MORE! I stopped taking my meds, stopped going to my Dr. and pretended that everything was fine. Until 3 or 4 years ago (memory hazy).
I had a T/C while playing at the park with my little one. We were seeing who could swing higher and suddenly it hit. Having my daughter nearly watch my life come to end made me re-evaluate my situation.
I went back to my doctor, I've been on Keppra ever since. In December he added Topamax, which I really didn't like! After my last visit he took me off that and now we are trying Epival. We are working together, he understands that my quality of life is important and if the meds mess with that too much then we try and find another way.
Don't give up just yet! Most on here have been through at least 6 drug cocktails before finding the right mix for each of us.

 

[RobinN]

Hi Sillymissy - I am a mom of a teen that has a seizure disorder.
My daughter tried four different meds, and the side effects were not acceptable to either of us. My daughter still does not drive, but we are finding ways to control her seizures by making nutritional changes. She is 3 months seizure free at this time, and seems to do well during her TOM when she is very careful with what she eats. Sure is better than having 6 seizures a month on medication... with all the side effects.

 

[Zoofemme]

Like others have said, it depends on what you are willing to live with. I was on Tegretol for a long time, gradually increasing the dosage. By the time I hit the max I couldn't take it anymore so for me; falling down all of the time and feeling drunk/hungover 24-7 and throwing up was too much. I tried to wait it out for 3 months but just couldn't hang anymore. It didn't give me adequate seizure control either. In comparison, Lamicatal could make me go bald and yes, I do experience some other side-effects but I could care less, the benefits I receive from it outweigh those

 

[meesher]

I looked in the mirror as I was dressing for one of my once a month visits to the neuro. Seemed like my hair line was getting a bit thin.... and I'm a woman. Darn. Then I read into the side effects (even more?) of Dilantin. Finally, an answer. One year of taking Dilantin and I am planning to SUE my neuro for giving me this med without mentioning the tooth decay, gum rot, memory loss, acid stomach, etc. I thought I was eating the wrong things! I thought my husband had gone off the deep end. And also, the neuro is from a country where men dominate. He (neuro) has told my husband that HE gets to decide when I may drive again. As if. Zoofemme, I want that squirmy frog thing. Can I make other images squirm?

 

[Hand of Blood]

i would love t change my meds! but right now i been free for a year and im so scared too. but the side effects are soooo bad i should prob be changing, also docs wont let me

 

[meesher]

I keep reading that some seizure activity can be stopped with diazepam. Diazepam? That is the evil Valium from the 60s! I cannot live my life in black and white with most of it in gray. I do not remember the last year at all. Snippets here and there.Skin all dry and crepy, blurred vision (who needs new glasses?) teeth rotting, gum rotting, no concentration, dizzy, "drunk-like" feeling; tinnitus in my ears and shooting pains in my chest. Neuropathy in my left foot. Wakes me up on the few nights I actually sleep. No, this will not do. The neuro has never (in one whole year) told me about any of the aforementioned; never suggested dilantin blood levels---never told me that Dilantin can elevate my blood sugars--but never checked for THAT either. He is the best neuro in 100 miles. WYF?

 

[valeriedl]

I've been on several different meds through the years and have been taken off them because they weren't working well or because of the side effects. I haven't been seizure free in the 9 years that I've had epilepsy. I think the longest I've gone was 3 weeks. My normal is usually at least 4 a month. Here in PA you have to go 6 months seizure free and I haven't even come close to that yet. I don't even know if I'd feel ok driving when I was aloud too or not. I don't know when a seizure is coming on so I don't know to pull over.

I've just learned to live with the fact that I can't drive. Easier said than done I know.

One of the meds I was on, sorry I don't remember which one though because as I said I've been on so many, I was taken off from the side effects it was causing.

I didn't want to eat, I just wasn't hungry, or even get out of bed, all I did was sleep. My family actually brought food into the bedroom for me to eat and make me eat it. I lost so much weight on that med so the neuro took me off of it when he heard what was happening.

I was on another one where all I wanted to do was eat. I'd wait for my husband to go to bed and eat a half a gallon of ice cream (not joking) then hide the empty contaioner in the garbage so he wouldn't see that I did it. I gained a ton of weight on that one. I think he just lowered the dose and I started working out so I'm doing much better.

I'm on keppra and have the extream moodness from it. I'm also crabby alot. That's just something that I've learned to deal with.

Talk to your dr about the side effects that you are having on the med and see if there's something that can be done about it.

 

[meesher]

Appt. with neuro tomorrow. Am titering off Dilantin AND Vimpat without medical help. First, I got tubby; now I am too thin. Going to try Diazepam (Valium) regardless of Neuro's opinion. The half gallon of ice cream sounds wonderful, but I am in vomit mode right now, so I am only eating dry kiddie cereal. Did you have your blood levels of med checked regularly? Apparently this is crucial, but my neuro never once mentioned it. Having that done tomorrow morning (fasting blood sugar should do it--and give me dry heaves). Have been seizure free for the Dilantin/Vimpat year, but would rather be dead.Keppra made me so combative that my husband and I almost killed each other. The ONE thing I do well is spell: not "aloud" but rather "allowed". Aloud means speaking audiby. Allowed means having permission. Not Webster definitions, just my short cuts. I Googled ALL the known "epilepsy meds" all have horrid side effects. I had my one lousy seizure when hub was yelling at me, ending in hospital in status epilepticus. Wonder if my seclusion with the scramer of a husband has anything to do with it. When I have a "good" day, it is because I forgot to take my meds on time. Good means I actually cook, and make my bed, change my jammies and sometimes, even take a whole bath! This is living in black and white, or sepia. Color life only returns when I forget my meds. The only way I would take Dilantin and Vimpat is at night, and then I would not sleep! Michele

 

[C0urt]

got off keepra for the side effects.
was dangerous for myself and others so it seemed to be best to get off of it.

 

[meesher]

Driving while you know you have epilepsy is a crime. If you do drive, and you hurt/kill anyone, you will NOT be excused. Indeed, you should, and will be, charged with VOLuntary manslaughter, if not pre-meditated murder. You knew you had epilepsy, just as a person who drinks alchohol and drives knows s/he knows s/he drank and then drove, you are guilty. Check your state's laws: drinking and driving is illegal as hell, and when you harm or kill someone else you do not just get an expensive ticket: you go to prison. Imagine having epilepsy in Prison. Lovely idea, no? Just the very fact that you have been prescribed epilepsy meds and have them in your blood stream, which will be monitored, means that you "knew or should have known" that you were a public menace.And if you are a minor, you will have the lovely promise of being incarcerated in juvenile hall until you are 21, and THEN transferred to a prison for adults. STOP DRIVING.

 

[kitty]

in australia if you have epilepsy you are allowed to drive under some expemtions for example people who have sezure only while they sleep or JME if they are controled are allowed to drive on the condition upon awaking that they wait a set period determined by there neurologist if they have had no jerk seizures with in thay time frame (those siezures lead to grand mals and all JME have them before grand mal and it only happens upon awaken) epilepsy associastion has worked closely to try and allow some epilespy to have some freedom to drive