Any advice/guidance/feedback would be greatly appreciated...

[salimander]

Hi! I'm a 22 year old male from Australia. I've had seizures since i was a baby but they were so infrequent that I was never diagnosed with epilepsy until my late teens, and even then I wasn't medicated. Around the time of my diagnosis, I was having about a seizure every 18-24 months. However, last year I had three seizures only a few months apart, and on each occasion I broke my clavicle (the same one each time!) after which I was put on Sodium Valproate, which I am currently taking (500mg twice a day). A few days ago I had another seizure, which means I only had 3 seizure free months on medication.

I am a university student so late nights aren't completely avoidable but I try (and often fail) to get to bed earlyish.

I stopped drinking most alcohol when I started taking the medication (On a night out I'd have only have 2-3 drinks)


My question is, am I going to have to stop drinking completely, get into an utterly strict sleep routine for the medication to stand a chance at working? Or am I just likely on the wrong dose or even wrong medication?

 

[epileric]

Welcome to the site Sal.

Personally, I would say that if you're seizures are increasing in frequency then stop drinking completely. Realize that they might get worse before they get better because you're stopping from taking something that your body is used to having on a regular schedule.

Also be aware of how much caffeine you take in. That is another known trigger for seizures.

Also remember that all anti-epileptic drugs have side-effects & the higher your dose, the more likely & stronger they are likely to be.

 

[Endless]

Salimander,

Hi, and welcome to the forum!

Sorry about the multiple clavical breaks. Is it all healed up, or do you still hurt?

Re: your questions. Any of those things could be true - alcohol or lack of sleep could be seizure triggers for you. Or, you may need your meds adjusted. Or, all three things could be true. Everybody is different.

Just speaking for myself, alcohol is a HUGE seizure trigger for me. I don't drink even one drink anymore. Never. Nada. I am now queen of the mocktail.

Do you keep a seizure journal? It would help you and your neurologist get all this figured out. They usually contain what meds you had that day, the what and when and how long of your seizures, possible triggers that day, if you had an aura before or postictal symptoms afterwards, etc. Here's a post with some pre-made journal formats:

http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

Have you called your neurologist and told him about your seizure? He really should know. He may call you in for an appointment, or adjust your meds via phone call.

Will you let us know how you are doing?

 

[Nakamova]

Hi salimander, welcome!

There's no way to predict whether you need to modify the med, your behavior, or both. Everyone has idiosyncratic reactions and sensitivities. In my case, missing some sleep or having a few drinks isn't a problem. But your situation could be different. You might start by asking your neuro if your levels of Valproate need to be checked; it's possible you don't have a stable amount in your system. Or perhaps a different med would work better. There a number of different ones out there to try if Valproate is problematic.

It's also a good idea to keep a seizure journal, where you note everything that might be a potential trigger -- fatigue, dehydration, flashing lights, alcohol, caffeine -- it could be a wide variety of things. If you do notice a trigger then you can avoid it in the future.

Best,
Nakamova

 

[salimander]

Wow, you guys are amazing. What thoughtful and considerate responses, and so quick! I am amazed. Thanks very much for your input. I think I am going to lay off he alcohol completely for a while, I shouldn't have to rely on it as part of my leisure time anyway, it's not worth it.

I have an energy drink every couple of days? That's got heaps of caffeine amongst other things so perhaps there lies a factor.

Also, two nights before I had the seizure I missed my medication? Is this likely to trigger a seizure two days later?

The clavicle is a lot better but is likely to need surgery as they think it's not healing properly.

To be honest, the only things directly surrounding the seizures are exhaustion or illness. Although this last seizure I really didn't feel THAT exhausted, just a bit worn out. I have tolerated the Epilim quite well and with the exception of hair thinning, have experienced little side effects. It took me so long to brave the drugs it's a little disappointing that they didn't work as well as I expected!!

Also is it good to be strict with med timing? Should they be as close to 12 hours apart as possible?

Thank you so much for all your help!

 

[epileric]

I would suggest keeping the times you take your meds as regular as possible. I know I'm pretty lax with when I take my meds & it doesn't seem to make a difference to me (possibly because they're time-released) but it can only help & not do any harm to take them on a set schedule.

If nothing else you'll learn if it helps.

 

[Nakamova]

The #1 trigger is fatigue, so anything you can do to make sure you get good consistent sleep is a plus. Definitely stay away from the energy drinks -- caffeine is a pretty common trigger for many of us. Infections can also lower seizure threshold, so staying healthy overall will help.

And yes, missing meds can mess you up too, even if it's a day or two later. The meds are so powerful that going OFF them can cause a seizure if it's done too quickly (sort of like ripping a bandaid off too fast and re-opening the wound). The half-life of the med and your metabolism are going to determine the best timing, along with what's easiest for you to remember. In my case, it doesn't seem to matter if I'm a few hours off either way. I also take a smaller amount in the evening than in the morning, on the theory that my metabolism is slower at night. But you may find a different strategy works better. It's also possible that your med level might need to be adjusted slightly upward if you're too vulnerable to seizures at the current dose.

 

[Endless]

Hey, Salimander,

Some people are very sensitive to the timing of their meds. Some people are not so sensitive and can be really loose about it. It also depends on what meds you are on. People on Lamictal XR can be downright relaxed about it.

Personally, I think that it's important to take them right on time. I have a little emergency pill bottle hanging together with my medic alert tag on a chain around my neck. That way if I'm anywhere other than home, I have my meds with me. I have a service animal that reminds me to take my meds on time, but lots of folks use a wrist watch with an alarm.

Would missing a dose cause a problem a couple of days later? Yep. Epilepsy drugs build up in the body kind of a strange way. Blood serum levels are cumulative over time. It builds up slowly over several days until it gets to the steady level. Same with forgetting a dose. It lowers over a few days until it hits a low for that missed dose, then goes up again. That doesn't mean you wouldn't feel a missed dose within a few hours. You would. But the effect on your blood serum levels could last for days.

 

[stephk]

hi Salimander

I personally try to be as strict about taking my meds on time as i can be, simply because if i don't then i forget them. Missing doses can be a trigger. Fatigue definetly, and stress. It will take some time getting used to everything. Just know that if you have ANY questions you can and will get answers and if you need to vent you will get hugs and good advice. Good luck, it takes time to adjust, you will get there.
steph

 

[salimander]

Yayyyyyy hugs, I like hugs I'm waiting in the drs office at the moment, and ideally I'll be getting a glimpse of clarity today... You folks have been amazingly supportive in such a short period of time, I'm blown away by your insight and care. I'd take another broken clavicle over another seizure any day, seizures suck suck suck....