Advice on First seizure after 15 years med and seizure free

Brighton

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I am looking for advice. I have been very fortunate in that I achieved a long time off valporate and being seizure free(14-15 years) I had a seizure in February and now in a dilemma re going back on medication. The neurologist suggested considering lamotragine as I have 3 kids and am used to driving and I surf and cycle a lot. However I am in recovery 13 years from drug addiction and like being chemical free. I know this is a luxury that I may be can't afford.
My questions are as follows...

Is it possible that being on a low fat diet for high cholesterol caused this after so long?
What diet would minimise risk of recurring seizure?

Does a 1 in 15 year chance of seizure merit risks of AED? What is people's experience of lamotragine?

How common is racking up that amount of seizure free time?

What would you do in this situation? As you folks know more of the facts than most of my mates and family and me!

Thanks, as I feel lucky that I haven't had any others since Feb and know it could be a great deal worse.
 
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Nakamova

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Hi Brighton, Welcome to CWE!

Is it possible that being on a low fat diet for high cholesterol caused this after so long?
It could be a contributing factor/trigger, but the bigger issue is that you have a seizure threshold that is lower than normal (in the sense that most people who go on a low-fat diet don't have seizures).

What diet would minimise risk of recurring seizure?
generally speaking, low-carb/high-fat diets can potentially help reduce seizures. In children the ketogenic diet is used. In adults, the LGIT and Modified Atkins Diets have been successful. More about the MAD here: http://www.atkinsforseizures.com/

Does a 1 in 15 year chance of seizure merit risks of anti-epileptic drug?
As they say with investing advice: "Past performance is no guarantee of future results." In other words, while the recent seizure may be a fluke, at this point there's no way to be sure of that. It's not unusual for seizures go into "remission" for many years and then suddenly return. I know the decision on whether or not to take meds is tough. If you're really not sure why the seizure occurred (no warning signs, no unusual stressors), then you might want to play it safe and try a small dose of medication for 6 months to a year.

What is people's experience of lamotragine?
I've been siezure-free on it for 6 years. Side effects at the beginning (poor sleep, some dizziness) that went away, others that have persisted (blurry vision, dry mouth and eyes). Everyone's experience is different, but you could start here http://www.coping-with-epilepsy.com/forums/tags/lamotrigine.html to read CWE threads on the topic.

How common is racking up that amount of seizure free time?
There haven't been a lot of studies to quantify this sort of thing, in part because seizure disorders can differ quite a bit from person to person. Rough statistics suggest that of newly-diagnosed patients with epilepsy, 20-30% will go into "remission" after receiving antiepileptic drug treatment of variable duration, 20-30% will spontaneously remit without treatment, and 30-40% will continue to have seizures. I'm sure CWE members will chime in with their own histories...

What would you do in this situation? As you folks know more of the facts than most of my mates and family and me!
Since I'm not fond of meds in general, my inclination would be to treat the breakthrough seizure as a fluke, and stay med-free for the time being. You would need to pay very close attention to how you are feeling -- keep a diary, and at the first sign of anything unusual play it safe and get in touch with the neuro. But that's me -- I work at home, I don't have kids, etc. I've actually tried twice to go med-free (with the approval of my neuro), but no dice., so for me, for now, the choice is clearer.

Best,
Nakamova
 

QueenieKP

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Hiya, hope it is a one off.

Don't know about diet. However, I can say from my experience I was seizure free for 10 years and off meds for 8 and once I had a breakthrough seizure I had t/c every 6 weeks as well as Myclonic seizures daily. For me medication has been a crappy but necessary evil to try and get seizure control again.

Welcome to the boards and keep us updated.

Q
 

Brighton

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Thanks I really appreciate your time and input. It took 8 months to get to see a neurologist and obviously no meds in that time but luckily no recurrence, so wait and see I guess.
 

Zolt

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Hey Brighton,

"Does a 1 in 15 year chance of seizure merit risks of anti-epileptic drug? What is people's experience of lamotragine?"

Like Nakamova, i'm not a sponsor for taking any meds if not needed. We have enough poisons to fill ourselves with already. :) After 15 yrs you only had one, i wouldn't say it a cause to jump on the drug wagon. But i'm not a doctor and only you know what is happening with yourself.

My experience with Lamotrigine was pretty bad. For the first 8 months, all went normal, seizure still happened, but then after 6 months, they started to happen less, one every 2 months instead of the regular monthly routine. Well when that happened, the seizures i had where very more intense than any seizure i had ever had. Normally my seziures would stop at the shoulders, but not with Lamotrigine. It went past and it really beat me up. So after 2 of those types of seizures and after increasing my amount to the max dosage, i was experiencing shortness of breath. Well when that happened i demanded to be taken off of lamotrigine.

Wow, you say it took 8 Months to see your neuro, good Lord, I'd be up in arms if i had to wait that long.

Zolt
 
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Belinda5000

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My husband had brain surgery in 1972 when he was 17 at N.I.H.
He never had another seizure.
He still has auras so he takes tranxene to control them.


Belinda
 

EC77

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Hello!

Sorry that you're returning to this. I have been in a similar boat, seizures from 18 made worse by excessive drinking. T-total, med & seizure free for 9years.

Then seizure 6 months after head injury (still not even sure whether seizure caused this) I was put on valproate but made me feel sluggish & put a lot if weight, which is not like me.

I'm now 4 weeks into the 5 month switch over process to Keppra. I was dreading it due to some of the reviews, but feel like my normal energetic self again & can keep up with the children. Also fairly new and if it works for you supposedly very few physical side effects. I was really anti meds but can't afford not to be able to drive again or risk the children having to call an ambulance when they find me unconscious. I hope you find what is right for you. Good luck. Emma.
 

Brighton

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Thanks for response. So just to be clear you went back on meds after first seizure in 9 years or you had two? don't understand bit about having seizure after head injury , sorry! Am from Devon also! Cheers martyn
 

EC77

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Thanks for response. So just to be clear you went back on meds after first seizure in 9 years or you had two? don't understand bit about having seizure after head injury , sorry! Am from Devon also! Cheers martyn
Hi Martyn

They were unsure whether a seizure after 8/9 years was what caused my head injury or whether the head injury caused the ones I had 6 months later. But from talking to others on here it is more common than we are made to think to have seizures again after a huge gap.

I was told that your brain can recover from seizures when you are younger but once you are slightly older it's not the same, as my neurologist said 'it's a case of when you have another seizure not if you have another one, if you don't go on medication'.

I still don't understand why I would have suddenly had seizures after all this time & find it hard to deal with, but now trying to find the right medication and look forward past this 'blip'.
 
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qtowngirl

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welcome brighton :)

in your teens did you get an actual epilepsy diagnosis or could they not figure it out? unfortunately if it is epilepsy it is for life, regardless of years seizure-free, brain surgery etc., reason being that our threshold is lower than normal and we are always at risk more than the average person.
it is a fact re: Emma's post "as my neurologist said 'it's a case of when you have another seizure not if you have another one, if you don't go on medication'." one of the most struggling parts of e to deal with, to accept that this is part of our life and always will be. to go 15 years free is amazing and not on the common side of things, so kudos to you! i get that this is hard to swallow (((hugs))).
myself have had e almost 20 years, and in total agreement with Emma; 4 mos. seizure-free after brain surg and feel good but if i ever wake up on the floor one of the first things i'd do is try more meds. best of luck for that to be a one-off whatever choice you make, keep us posted!
 

qtowngirl

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sidenote to belinda (i don't like changing thread topics but tried to private msg and it won't?)... re: husband not having a seizure since surgery but still has auras. i'm not sure how to put this gently, an aura is a seizure. the names are interchangeably used depending who you talk to, however, whether or not the aura turns (into a complex partial or grand mal), it is still a simple partial seizure.
have had over 1000 s.p.'s and just had brain surg, learning i had a lesion almost three years ago caused my research to flare more than usual, so this subject is not something i just throw out my 'opinion' on.
breaks my heart really as i can't imagine the feeling of ANY type of seizure, even simple, after risking my life. hugs to your husband, and imo i'd follow up your reference to 'auras' with a neuro.
 
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Why Switch to Lamotrigine?

After 11 months without a seizure on 3000 mg Keppra had a general seizure after two days without quality sleep and a stressful night. Based on what I know to be my triggers lack of sleep and stress, I'm not sure Keppra is not doing its job and kind of wondering what I will gain by switching to lamotrigine.
My only problem with keppra is some anxiety and irratabilty.

Have to say a strong mental attitude goes along way with dealing with E.
 

qtowngirl

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hi dave :)
though 3000mg is a fairly high dose, a grand mal doesn't necessarily mean you have to switch (tho it's always your choice). from my experience w/my neuro and epileptologist, if it's a med you prefer to stay on, and don't mind the side effects too much, the first choice rather than switching is upping.
having a g.m. breaks through your seizure threshold, and regardless of the trigger E med(s) are supposed to hold their own. but if you seize, they failed, which leaves one of two choices (would be rare/wrong for a neuro to leave doseage and/or meds as they are). ideally if you're not against keppra imo try upping the dose first; however if you're like 'to hell with this i want off' then lamot is not a bad alternate for many.
it does come with side effects, some serious such as rash, weight gain and major hair loss, but can also level out (i had rash and hair loss but they went away).
one of its main advantages is being a mood stabilizer, which can also be key for stress. keep us posted :)
 
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