Popular Story Lately, it seems...

[AndrewIrish]

Well, I was on here quite some time ago talking about my suspicion that I had JME - well, it's been diagnosed, finally.

Finally got my insurance, went straight to a Neurologist and explained everything going on with me - rampant family history, the grand mal's, the everyday myoclonic jerks - it was a quick visit.

He told me I had JME most likely and has started me on Lamictal. 25 miligrams and 'titrating' is what he called it(slowly upping the dose) to 100 MG. Seems like a normal response these days.

Well, on my prescription plan Lamictal is MEGA BUCKS - so I am getting the generic filled, Lamographine, something like that?

I'm having a bit of problem on top of all this, though. Luckily in Ohio, there appears to be no laws whatsoever that would prohibit me from driving.

Yet of course, two Neurologists told me, 'ABSOLUTELY do Not drive until seizure free for 6 months.)

Problem is, I'm an auditor for a lawncare company. I drive about 100-200 miles a day. I have myoclonic jerks sometimes, which make it hard, yet I've never had a 'grand mal' or what have you, driving. It IS hard though, sometimes.

I mean, I have whole days sometimes where I feel 'on edge.' Like, the whole day, just jittery and shaky - more prone to the myoclonic jerks. It's strange.

Well, after my neurologist appointment, I handed my boss a letter stating I wasn't to drive in the hopes he would let me have an 'inside office' job at my branch for a while. He flat refused and told me if I don't drive, I don't work.

Well, today... I had one of those jittery days, nauseous, shaky, lots of jerks. I gave up driving after 2 hours in and went home, frazzled, where I am now.

Told my boss I was messed up and I have a strong feeling he's going to fire me over this. Is this legal? Anyone know? It's bizarre.

Even as I write this I just... 'feel wrong.' I'm going to start the Lamographine tomorrow in hopes it stops these 'frazzly' days.

Any advice about the job or an opinion on it or the meds I'm taking? Would be grateful.

Also on EDIT: I have to be truthful, here.

I've got a problem.

I think... I... I might have a slight alcohol problem. I mean, it's... I don't know. I'm sure I could stop, just... it's bad, what I'm doing.

Generally, and this has been my trend for the last several months, everyday I'll polish off a twelve pack after work. I mean, I can sometimes, go a day or maybe two without drinking, but never more then that. It's hard - saying I have a problem with Alcohol, I do though. I also know from reading that... and now feeling this way today like I do, that my 'bad' days are being brought on from what I consider 'hangovers.' My hangovers though usually last ALL day and have me feeling REAL messed up. It definately makes my jerks more prevalent and I feel... in danger, really.

I know I need to stop drinking period - is there any relation to 'drying out' and 'epilepsy'? I'm stopping. Last time I drank was last night - a twelve pack.

I can't handle feeling this way afterwards, anymore. It's horrible - tremors, shakiness, the jerks out of control. I know it's lowering my seizure threshold, putting me in danger.

I don't know. For lack of a better word - call me an Alcoholic. How do I just... should I just go cold turkey? Would that bring on a seizure within a few days?

I'm worried.

 

[DayDreamer]

Good Goal!

I would openly discuss all things that would possibly play with my health with my doctors. Withdrawing from alcohol is a very good goal than can improve seizure control, but it may be good to speak to your neurologist of a specific plan to take. People without epilepsy often have seizures or worse due to sudden alcohol withdrawal. Do it and your lamictal or possible depakote may work better.
Why are you restricted from driving if your consciousness is not impaired? You have grand mals, or they are in your family history?

 

[Meetz1064]

I would say

that you're right when you have said that the alcohol is causing a problem. It definitely is.

Now, I'm not sure what's out there to help you break that habit, but I do suppose you could work yourself off slowly. So, instead of a 12 pack, start out drinking 11 for a few days, then go down to 10 for a few days, so on and so forth. It will take some time, and it won't be easy. Going cold turkey in your case would more than likely set off a seizure....And, I'd check out AA.

Take up some good habits, such as meditation, going for walks, changing your diet to a healthier one. And DEFINITELY get enough sleep. A MINIMUM of 7 to 7.5 hours per night.....no excuses, no ifs, ands or buts about it.

Stick around. We'll be here for ya. There's lots of friends for ya to make, and information for ya to learn, so hang out, and check things out.

Take care,

Meetz
:rock:

 

[AndrewIrish]

Yea...

I lose memory, time, conciousness when I have Grand Mals. Yes, I have Grand Mals.

I don't have 'restrictions' in any case - no such thing in Ohio, as far as I understand. I can LEGALLY drive just fine - I just don't LIKE to and my doctors warned me NOT to because of the possibility of having a Grand Mal or hell, even a strong Myoclonic Jerk could send me hurtling off into traffic if I'm not careful.

I've decided I'm going to risk it - I've just gone cold turkey on the alcohol. If I have another seizure - oh well. I think if I make it past a week, I'm in the clear.

I don't get enough sleep either - need to work on that.

 

[Nakamova]

Hi Andrew --

The Lamotrigine should help with the seizure control, but it's a very bad idea to mix it with alcohol. Basically what happens it that each increases the other's absorption rate: The sedation effect of the Lamotrigine plus the depressant of the alcohol, both ramped up to knock you out.

In general, the alcohol could definitely be a seizure trigger (it affects sleep and digestion, causes dehydration and nutritional deficiencies, etc.), so I'm glad to hear that you're trying to stop. I would caution that if you have a serious alcohol problem, then stopping cold turkey can potentially cause seizures as your body adjusts. It sounds like you may not fall in that category yet, but I agree with Meetz above that you might want to go slow, or at least go easy on yourself by not setting expectations too high, too soon.

Is it possible that you could take a sick leave from work while adjusting to the medication? Then you could get a feel for how good your seizure control is and how you feel on a day-to-day basis.

Check in here and let us know how you're doing. Lots of good company and support.

Best,
Nakamova

 

[AndrewIrish]

A sad update to the story...

... today, I tried the pills and they had me feeling sluggish, dizzy and sick - to the point where I called in for a second day ina row to work, telling my boss I don't feel safe to drive and wouldn't be in.

So he fired me.

Now I have the daunting task of praying I get some unemployment and enrolling in 'clinics' in Cincinnati. Good thing I got this script filled just recently...

... I'm in some grade a problems.,.. is this legal? If I'm diagnosed with Epilepsy and am reacting negatively to these pills and don't feel safe to work or get to work - can they really fire me without repercussion?

This is horrible.

 

[Nakamova]

Well that's lousy, I'm sorry.

I don't know if what your boss did was legal. It was certainly unfair. You might try contacting Cincinnati Legal Aid for advice:

http://www.lascinti.org/

Re: the meds -- some of Lamotrigine's side effects will go away as your body adjusts to it. I experienced the dizziness when I first went on Lamictal, but it's not a problem now.


Best,
Nakamova








http://www.lascinti.org/

 

[MrsDSB]

hi Andrew. i know what you mean about the whole job thing. i've had 2 employers fire me but they used the excuse that i was unreliable. i was so mad. i also know how you feel about the alcohol. i have one side of the family that is mainly alcoholics...so if you need to talk to someone let me know. i've been thru a lot with them trying to get past the drinking problems.

 

[AndrewIrish]

Now THIS is a bizarre twist...

I'm not that intuitive.

I just paid for my pills earlier today and took 'em - obviously, I'm a moron. Didn't read the label, figured I was getting like physically told by pharmacist, Lamogtrine(whatever.) --- just now, I look at the bottle - it's Topiramate!!!!

I did a little research - a generic for Topamax?

Guess it was cheaper...

Also, TRULY bizarre--- boss calls me back, tells me that they're extremely understaffed(which they are) and tells me if I'm interested, I can continue working yet I'll be on a 'final warning.' Obviously, I need this insureance right now, I caved.

So I'm still working THANK GOD - also, I'm not even takin the medication I thought I was. What the hell? I'd asked the pharmacist to see if she could fill the generic for Limactin and ended up, at least as I see it, getting a different drug altogether! It's my first ever anti-convulsant I'm taking, so no drug switching, just kinda funny how doctors determine what drugs to give ya... but I'll happily take Topamax over Lamictal if there's a $100 monthly difference out of pocket...

 

[MrsDSB]

you should talk to your doctor about a drug program. here in Indiana we have a program where you send in info like tax return and pay stubs and the company, drug company i think, goes over the info and if you qualify, you can get them at a reduce price or even free. you should check it out. with me not working it realllllllyyyyyy helped getting the meds free.