strict med schedule and violent seizures

[PixiDust]

Hi everyone!
Hey. questions here. I recently started to be super strict about my medication schedule, like down to the second, with my seizures becoming quite well controled. I typically have 3 seizures a day (absence) but now have only 2-4 a week. HOWEVER, when I do take it say, 15-30 min late (I know how bad that is) I have violent drop seizures. Once I was running and ended up sprawled on the side of the road. Another, I was at a field school and fell backwards, jamming my hip. I take a cocktail of Lamictal, Clonazapam and Oxycarbazipine. Anyone have any suggestions as to the violence of these?It is like my body has become addicted to the meds and has BAD with-drawl
I haven't had a drop seizure in 5 years, and now that I am being ultra strict they are back - and I don't want to go back to 3 seizures a day. Thanks!

 

[Jay1]

Everyone's situation is different. However, I will seriously suggest you to chat with AlohaBird. AlohaBird used to be on mutiple AEDs and I believe that she has reduced her medications quite a lot with changes in her diet. She is quite helpful also.

People who take cocktail of AEDs have a much higher risk of SUDEP than people taking only one AED.

 

[lnsiu]

I think you really need to look at what is happening when you miss the time with 15 minutes. The time in it self does not seem plausible, there should be something more at hand.

For example(just examples):
-Being stressed out about the time you chew the pills instead of swallows.
-the inability to keep time is in itself a measurement of daily status. Make sure you get opportunity to rest or the like.
-you eat the meds normally with breakfast, or swallows them with larger amounts of water, than you do if you are 15 minutes late.
-your stress level inhibits some of the meds to work properly.

Edit: I read some reports stating that medical suppression of mild seizures might give rise to "worse" problems. The theory at hand made the argument that meds perhaps only treats sypmtoms and not actual cause, creating some sort of buildup in the brain that then take a more serious course. I say this because this is a realistic third option. The fact that you are controlling your seizures might give rise to these larger "releases".

 

[Kgartner]

First of all PixiDust - that should NOT be happening. While it is important for many to be very consistent with medication timing, you should not need to time it to the minute or second to avoid seizures. When my daughter was 2 hours late with a medication and she had a t/c seizure, her doctor considered that to be inadequate seizure control. You need to speak with your doctor and see if you can tweak some aspect of your treatment so that you have a bit of wiggle room.

Secondly, I do feel the need to address some of the advice you've been given already. Jay1 - I do think that it would be worthwhile for the OP to check out some dietary therapies, and AlohaBird has tons of solid advice about that. It's a great idea make that suggestion! But this is not the first time that I have seen you make the connection between SUDEP and multiple AEDs, and I think that you are misunderstanding the association. Anyone with epilepsy is at risk for SUDEP - it can strike out of the blue even in people who haven't had seizures for years. However, the risk is highest in people with uncontrolled seizures, and of course it is those people who are most likely to be taking multiple epilepsy meds. Someone taking multiple AEDs with well-controlled epilepsy is less at risk than someone taking 1 med (or no meds) whose epilepsy is uncontrolled. To suggest that it is the medication that is increasing the risk of SUDEP, and not the underlying seizure disorder is incorrect, and could be dangerous if someone made a treatment decision based on that misunderstanding. Please be more careful with your assertions!

 

[PixiDust]

Insui: as for the extended periods of time when I don't take my meds. Usually what happens is that I am doing a task such as writting a paper, and will tell myself: 'when I get this paragraph done I'll take them' then get absorbed in the paper only to realize I didn't! So yes, I have always had time management problems. Stress: I definitly have WAY to much in my life! (second degree student here)
- I will definitly contact Aloha Bird-

Everyone else: thank you SO much for the advice, I had never connected it with Sudden Unexplained Death in Epilepsy. And will definitely be talking to my doctor about it. I've given MAD a try (Modified Atkins Diet) but there was no difference but hopefully Aloha Bird can give more advice.

 

[Cint]

PixiDust,

Like Kgartner said, you need to speak with your DOCTOR for advice about your increase in seizures and the amount of meds you are taking. I've been there myself. I've gone status several times, too. Not because of stress or diet, just because of the type of E I have. Also, I have met the mother whose daughter did pass because of SUDEP. The girl was only 16 at the time. Usually that is the time when SUDEP does happen---teenage years and older years of a person's life. If a person with epilepsy does pass, it is usually because of the accident the seizure caused. I know. I've come very close to death several times because of accidents I had during seizures.

Let your epileptologist know what's going on in your life.

 

[Cint]

I think you really need to look at what is happening when you miss the time with 15 minutes. The time in it self does not seem plausible, there should be something more at hand.

For example(just examples):
-Being stressed out about the time you chew the pills instead of swallows.
-the inability to keep time is in itself a measurement of daily status. Make sure you get opportunity to rest or the like.
-you eat the meds normally with breakfast, or swallows them with larger amounts of water, than you do if you are 15 minutes late.
-your stress level inhibits some of the meds to work properly.

Edit: I read some reports stating that medical suppression of mild seizures might give rise to "worse" problems. The theory at hand made the argument that meds perhaps only treats sypmtoms and not actual cause, creating some sort of buildup in the brain that then take a more serious course. I say this because this is a realistic third option. The fact that you are controlling your seizures might give rise to these larger "releases".

-Being stressed out can effect seizures
-you can take your meds an hour earlier or later, depending on the meds. TALK TO YOUR PHARMACIST
-Stress levels effects blood sugar levels which can effect seizure levels/med levels. TALK TO YOUR EPILEPTOLOGIST.

Seizure beget more seizures. Therefore, if they are not controlled well, one will go on having seizures. And yes, meds only treat symptoms. That is what they are made to do. Meds will not treat the actual cause of the brain disorder. That is what brain surgery is for!

 

[masterjen]

And yes, meds only treat symptoms. That is what they are made to do. Meds will not treat the actual cause of the brain disorder. That is what brain surgery is for!

And hopefully some day neither will be necessary. I am hopeful that advances will be made in gene therapy and stem cell therapy that both surgery and/or long term medication will become a thing of the past.

 

[Cint]

And hopefully some day neither will be necessary. I am hopeful that advances will be made in gene therapy and stem cell therapy that both surgery and/or long term medication will become a thing of the past.

Me too!!

 

[PixiDust]

And hopefully some day neither will be necessary. I am hopeful that advances will be made in gene therapy and stem cell therapy that both surgery and/or long term medication will become a thing of the past.

actually, I have had a crainotomy (I know that is spelled wrong, can't figure it out and spell check doesn't know it... ) and am ineligible for brain surgery. My right half would probably not work if they went ahead with it. So right now I am trying as many alternatives as possible- including a super strict med schedule..

 

[Pinkattitude]

Hi everyone!
I typically have 3 seizures a day (absence) but now have only 2-4 a week. HOWEVER, when I do take it say, 15-30 min late (I know how bad that is) I have violent drop seizures.

Wow, if my drugs were that sensitive, I would be in deep deep trouble! Through the years, I can think of so many times when I've not be good about the time I take them. I will take them "before I go to bed" and that changes a lot from week days to weekends.

I agree with the others who have said that you need a new drug/drug regime! Please talk with your neurologist about this soon. You deserve a better quality of life than you've got right now!

 

[AlohaBird]

Insui: as for the extended periods of time when I don't take my meds. Usually what happens is that I am doing a task such as writting a paper, and will tell myself: 'when I get this paragraph done I'll take them' then get absorbed in the paper only to realize I didn't! So yes, I have always had time management problems. Stress: I definitly have WAY to much in my life! (second degree student here)
- I will definitly contact Aloha Bird-

Everyone else: thank you SO much for the advice, I had never connected it with Sudden Unexplained Death in Epilepsy. And will definitely be talking to my doctor about it. I've given MAD a try (Modified Atkins Diet) but there was no difference but hopefully Aloha Bird can give more advice.

My ears were ringing.

First of all, I have to agree with everyone who said that 15 minutes one way or the other in taking your meds should not make or break your seizure control. This is not good and you do need to talk to your doctor.

Second, I think that both Insiu and Cint had a good point that the stressing out factor is not helping any. Constantly checking your watch. That is too high cortisol/adrenaline load to be carrying around all the time.

Jay, thank you so much for having such confidence in my wisdom but really I know very little about the specifics of Pixie's case. I have never had either of those types of seizures nor have I taken any of those three meds or had a craniotomy.

Dietary strategies are great for general overall health which does lead to neurological health in my experience but it is something that happens over time. What Pixie had going on is an acute situation which needs to get under control first. A MAD style diet is a great place to start. Other terms to google are Primal and Paleo.

Pixie, the biggest piece of wisdom I could give you right now is to find a way that works for you when it comes to stress management. Take a yoga class, do some meditation, do some deep breathing exercises, get some exercise (any exercise), get out in the fresh air, get some sunshine, and most of all get some sleep.
I know college students tend to think of sleep as optional. It's not.

 

[PixiDust]

Hey guys - in specific Aloha Bird-
I spoke to my epileptologist, and he said to start the MAD diet. AGAIN. I have tried it before, and all it did was drain my energy. So, any suggestions as to the best way to do the MAD diet which I may have missed, or alternatives? Again, thank you everyone for your support

 

[lnsiu]

Change most fat to coconutoil. Burns faster and is a good alternative to carbs.(besides, there seems to be some other benefits...)

Drink more fluids. This fatty diet seems to consume more water? Not sure if I imagine this or there is a metabolic change?

Being this tired really sucks. I guess the body needs some time to adjust? Excersise is no problem, but mentally it is really really slow. So I feel for you, studying and all.

 

[PixiDust]

I take it you are using MAD? I'll put these into my diet. I'm trying to eat lot more fruits and veggies, and more fluids will be no problem. Hot as heck here. As for being tired? I read that when the body changes from fat reserved energy to protien energy, it takes a while for the body to adjust... as you said. So I will have to find a 'jump start' that is not coffee. Which, will be a problem, as I live off it during finals.... green tea I guess!

 

[lnsiu]

I'm not sure what diet I'm on actually, but very little carbs and a lot of fat. I guess I'm more than a few grams above 20g carbs daily? I've been trying to change all fat to either olive oil or coconut-oil, but like you said it is very tiring.

Exercise seems to raise the blood-sugar level, or so it feels, so if it is possible for you to exercise, a quick run could possibly also clear the mental fog a few hours?(seems complex, and dependent on many factors, read for example here: http://www.diabeteshealth.com/blog/why-does-my-sugar-go-up-after-exercise/)

I think I will try to measure more precisely what I eat. Not sure what is recommended, but I will probably use wolframalpha.com to get average nutrition facts and measure one or two days to get a sense of fat/protein/carb proportions. A query for "banana" would give average nutrition facts. A bit like google but scientific.

Is there other ways to precisely measure food nutrition values? Some app or something? I guess poor data is the most likely way to fail MAD. One banana is 27g of carbs for example.

 

[PixiDust]

There is an app from Atkins Diet it's self (phase 1 is the MAD diet). Free to download. It helps you keep track of what you are eating, (you can actually scan it in) measuring/amount, if you stayed on track that day, week, month, ect....there is nothing this app doesn't do but make the sun rise. As for nutrition facts... i didn't explore that part. I'd check it out.
Yes, it is possible for me to exercise, there are several gyms, running paths, ect around here. Exercise actually clears my mind in a relaxing way, you know a yoga kind of thing except you sweat.

 

[PixiDust]

I would also talk to a registered dietitian who works with the MAD diet. My dietitian didn't know how it worked, so she spoke with a colleague who did. Things worked out okay, though the best part was I could ask her questions which a typical website doesn't have the answers to. This way, you can get your nutrition information plus more.

 

[lnsiu]

Hmm, didn't find any promising app, but noticed it is possible to make very precise calculations i wolframalpha.com.

I make my own smoothies and drinks + some odd dishes, so wolframalpha seems very handy.

I can type queries like:
300g banana + 300g strawberry + 1dl coconutmilk
100g meat + 1dl rice + 50g lettuce + 1 egg

I can already see I'm a bit high in carbs, and what to blame.

 

[AlohaBird]

Hiya Pixie
That drained energy feeling is known as "the low carb flu". It is a sign that you are transitioning out of being a primarily sugar burner into being a metabolically flexible what Mark Sisson (of Mark's Daily Apple) calls a "fat burning beast".
The LC flu varies in severity and duration depending on how much you were into the sugar for how many years but standard transition is about two weeks.

Things that can ease the transition. Make sure you are getting enough water and electrolytes. Going low carb causes you to shed extra stored water in your tissues but a lot of electrolytes get "flushed" so to speak as well.

Also make sure you are eating enough food in general. Going LC takes the edge off your appetite so it is easy to forget to eat.