Where's the line, What is/isn't worth it

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AlohaBird

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This pondering I'm doing was started recently by a very dear friend of mine who also has epilepsy, a much more severe and not as well controlled case compared to mine and who is on much heavier meds with much worse side effects.

When asked point blank "Which is more important to you, being able to have pizza and beer or having a non-seizing brain?", he in all honesty opted for the pizza and beer.

Now I *get it* that I have no right whatsoever to tell another human being how to live their life, but I can't help but shake my head in wonder at the choices some people make.

So I started thinking about what goes into the tradeoff cost/benefit analysis for various people when thinking about various treatment options for their E.

This is some of what occurred to me. See what you think and if you have anything to add.

Considerations :

1)How "bad" are your seizures when untreated?

I put "bad" in quotes because I don't want to get into any "my seizures can beat up your seizures" comparisons. They are all horrible but some are more debilitating than others in terms of being able to work, drive, remember things.

2)How well controlled are your seizures when on meds?

I can see that if the meds aren't working, there might be more of a tendency to be open to alternative treatment options but if they are working well there might be a reluctance to rock the boat or fix things that ain't broke.

3)How severe are the side effects of your meds?

People with great control and minimal to no side effects might not be interested in novel approaches. People with the opposite, lousy control and horrible side effects might really feel the need of an alternative.

4)Do you believe your meds cause long term side effects perhaps more subtle but dangerous over time? Does this bother you?

5)How much faith, if any, do you have that any non-pharmaceutical treatment will make any difference?

If your answer is "zero" then I guess the discussion ends there.

6)What would you have to "give up" and how important is it to you, how hard would it be?

Some people feel they can't live without their coffee. Some people are addicted to drugs, alcohol, cigarettes and feel they can't quit even though they know full well these things are killing them.
Some people just really like a nice glass of Pinot Noir now and then.

7) Individual, personal factors in your world making you more/less risk averse.

These could be things like do you have young children who are counting on you? Are you concerned with losing your job and/or driving license? Do you have a support network of family or friends?


So just as an example using my case:

1)My seizures are tc's but are not that frequent and are exclusively nocturnal. So I was able to work until I chose to quit and I still drive. Also I have never injured myself since I'm all tucked in when they happen.

2)I have complete control on meds.

3)Side effects include weight gain, sleepiness so, not that horrible just annoying.

4)Long term side effects include nutrient malabsorption and all the damage that can cause, liver and kidney overload, etc. This bothers me a lot. I want to live to 120 and still kicking it. I don't want to die of renal failure at 80 because of my meds. I was born with only one kidney so this is a major concern for me too.

5)I have a lot of faith in things I research well. I don't go for the latest thing that is "trending" at the "curezone" site.
I'm still investigating several things. Some I see a direct casual relationship to my seizures, e.g. I don't do caffeine, booze, sugar, gluten, MSG, or aspartame and try to get enough sleep and I take magnesium.
Others I see as good for my general health and therefor good for brain health, e.g.a few supplements, getting regular exercise.
Some things I've tried didn't seem to matter, e.g. progesterone supplementation and some made things worse, e.g. melatonin.

I'm willing to take a chance on trying things after having done my homework. I figure I don't have anything to lose.

6)I gave up gluten and sugar and went low carb in 2009. Went Primal shortly after that and gave up processed junk foods and chemical additives. That was easy for me. I had given up the coffee years before. That was hard but worth it. I have gone back and forth about if it was worth it to give up that last occasional glass of red wine. I'm currently booze free and I just have to remind myself of the last time I drank at a friend's wedding a few months ago to remember how much better this feels. Totally worth it. I really and truly like the foods I eat and have no desire for stuff like bread and cake.

7)I am retired with no family to take care of but I have great friends and a wonderful seizure alert dog who takes care of me. So, the worst that could happen for me if I have a breakthrough seizure is a crappy night's sleep and a sore tongue for a few days. I don't have to get to a job or get the kids off to school in the morning.


So for me the downsides of taking a chance on non-pharmaceutical treatments are minimal and the upsides are significant. Nothing to lose and everything to gain.

What goes into your personal cost/benefit analysis?
 
I have not been diagnosed yet but my PCP put me on Keppra. Keppra causes me to take a 2 hour nap in the afternoon. I am a stay at home mom (I prefer the term Domestic Goddess) with a 3 year old (but I also help my hubby who is self employed). I am worried that while I take my nap the baby will burn the house down. When I had my last seizure I hit my head and got the toilet paper holder shaped bruise imprinted on my butt. What is worse my baby getting hurt or me getting hurt? Any mom knows the answer. I will see the neurologist in 6 months....
 
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What goes into your personal cost/benefit analysis?

Now that is a good question. I employed a similar frame of reference when creating the (my) chart of alternative treatment options. It's not easy to quantify how attractive a treatment option may be for everyone, but I tried to assess some relative factors anyway (and everyone who reads the chart is welcome to agree or disagree, but at least, my hope is, it gets people thinking about these things).
 
Now that is a good question. I employed a similar frame of reference when creating the (my) chart of alternative treatment options. It's not easy to quantify how attractive a treatment option may be for everyone, but I tried to assess some relative factors anyway (and everyone who reads the chart is welcome to agree or disagree, but at least, my hope is, it gets people thinking about these things).

:agree: And I have looked thru that site many times when going thru my difficult to control seizures. So I'll just leave my answers there. My life is definitely worth more than a stupid beer. If I don't take meds, I seize and could die.
 
This is a very good point.

So, for you, if I'm understanding you right is, yes, the meds "work" but the side effects are severe enough that, because of needing to take care of your child, you might be open to exploring something other than meds.

I had thought of needing to take care of a child only as a reason why someone would opt for the 'road more traveled" of taking the medication. This shows me that the opposite can be true as well.

Thanks for sharing this.


I have not been diagnosed yet but my PCP put me on Keppra. Keppra causes me to take a 2 hour nap in the afternoon. I am a stay at home mom (I prefer the term Domestic Goddess) with a 3 year old (but I also help my hubby who is self employed). I am worried that while I take my nap the baby will burn the house down. When I had my last seizure I hit my head and got the toilet paper holder shaped bruise imprinted on my butt. What is worse my baby getting hurt or me getting hurt? Any mom knows the answer. I will see the neurologist in 6 months....
 
Now that is a good question. I employed a similar frame of reference when creating the (my) chart of alternative treatment options. It's not easy to quantify how attractive a treatment option may be for everyone, but I tried to assess some relative factors anyway (and everyone who reads the chart is welcome to agree or disagree, but at least, my hope is, it gets people thinking about these things).


Exactly. My thread here is meant to be a more subjective, individual analysis.

Several things score a zero on your chart for efficacy because no "gold standard" large trials have been published.

Also it's hard to average out the various factors as if they were all equal for any one person.

For example, as Cint says, she has a very real danger of dying if she loses control of her seizures so , for her that factor is going to weigh more.

For me, with one kidney, I feel I have a greater risk of serious health damage in the long run from the pernicious side effects so, for me, that factor weighs more heavily.

So this is less about statistical averages and more about personal stories.
 
I should add that I would take meds if I had another seizure or I was actually diagnosed. The more I read the more I realize I could have psychogenic seizures. And I question if it's OK to take meds without diagnosis for 6 months. I still hope I can see somebody sooner.
 
I am happy for people who can chose pizza and beer over a non-seizing brain. I sincerely wish I could.

What matters more for me? Easy question. I would give anything for my son's brain to be seizure free. But I cannot compare this to pizza and beer, these really are to trivial in my situation (no offense please...) so let me consider more essential things. But the difference is: I'm not considering for myself as someone with epilepsy but for my child, being a mother.

Suppose I had the choice: my son could stand and walk / sit on a couch without falling of / could talk and converse / could express his needs / could write and read / would need no diapers / could wash and dress himself / could ride a bike / could sleep in a normal bed instead of a 'cage' / could go to a normal school / would have friends to hang out with him / would grow up to be an independent young man / would have a girlfriend / would become a husband / would become a father / etcetera...

OR

my son would have an epilepsy free brain and no seizures... (despite his brain damage and handicaps)

I would choose the last option without any hesitation.

Out of all limitations, all his severe handicaps, all the care he needs, our completely adapted life, all people staring at him and pitying us, the Lennox Gastaut syndrome for sure is the greatest influence on my child's and family life.

At the age of 2 - 5 my son had hundreds of seizures a day, he has had absences, tonics, clonics, tonic-clonics, myoclonics and complex partials. Over 10 medications did nothing for his epilepsy but he suffered all possible side effects. His EEG was disturbed with a LGS pattern for 99-100% even when we saw no seizures at all. We were desperate to see him suffer, we lost all contact for a while, we had to give diazepam or clonazepam so often we feared it wouldn't work anymore.

Fortunately he responded well on the ketogenic diet. The number of seizures decreased, his EEG improved, but he still has seizures, mostly tc's and t's. We didn't need to give him diazepam or clonazepam for years now. But this diet is hard to do, it costs a lot of time and limits my son to eat many things he would like to eat and drink.

I still have nightmares and sleepless nights, fearing he won't be waking up one day. My husband sleeps with my son downstairs at least 4 day's a week. And we both have new worries about his future now he is age 16.

So what's worth it? Anything.
 
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I have a friend who has a son (now 62) who has had epilepsy for 50 years. He was hit by a car at age 12. He has had numerous shunts, had to relearn everything, lost partial use of his right arm, and has an IQ of about 80. He has been seizure free for six years now. He is good natured, and overall has been ok. He is married to a daughter of a "Dear Abbey" type columnist, and is financially set. A cost/benefit analysis never crossed his mind, I think. He lives too much in the present.

Without medication, there are times when my brain is just soup. This is why I wonder how people on AED's can do so well mentally. The last thing I need is a channel blocker to slow down an already malfunctioning brain. The only thing a channel blocker would really help me with is my heart palpitations and arrythmias. (I may need to revisit that issue in the future.)

My brain has kept me alive, so that is my benefit. Things felt seriously wrong when I was on medications. My hyperreactive physiology contributed to this. I have known that part for years. I remember the last time how my body reacted to a tetanus shot, or the last time I iced my knee after surgery. It cooled my whole body down for hours before I knew it. I have to have a functioned brain because I understand my body better than anybody else.
 
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I should add that I would take meds if I had another seizure or I was actually diagnosed. The more I read the more I realize I could have psychogenic seizures. And I question if it's OK to take meds without diagnosis for 6 months. I still hope I can see somebody sooner.

Now this would make a very good addition to the list of factors to consider above. Being left hanging without a real diagnosis for a long time. The advice that is always given to talk to your doctor is very sound but it's not always feasible depending on where you live and what health care plan you have. Sometimes people manage on their own for a while by necessity.
 
Personally, I take the medicines prescribed by my doctors. When I was younger and on Depakote I took the meds but I remember being more hesitant about it. When I was younger, I had focal seizures only. Now that I have more serious generalized seizures, and after breaking my shoulder because of it, I see the value in taking my medicine religiously.

1)How "bad" are your seizures when untreated?
Personally I'm not sure this question matters that much. In my case, I had very minor, almost benign focal seizures that caused me no real distress. I also happened to have a doctor who saw this and took me off medication and allowed me to have a normal life by learning to drive and become more independent at the same age as most kids do. My point though, is that my seizures very rapidly and unexpectedly turned into generalized seizures with major consequences. I never would've expected to be unconcious on the floor of my apartment for nearly 1.5 days, psychotic, and with a broken shoulder after having the worst (tonic clonic) seizure of my life. Seizures can change and having minor seizures can eventually lead to more serious seizures if untreated. This is my point.

2)How well controlled are your seizures when on meds?
In my case, I am lucky that 2000mg of Keppra twice daily has stopped my general seizures (and for the most part, my focal seizures, although I've still had a few here and there).

I can see that if the meds aren't working, there might be more of a tendency to be open to alternative treatment options but if they are working well there might be a reluctance to rock the boat or fix things that ain't broke.
Absolutely. I know what a ketonegenic diet is, but I have no desire to put myself through the effort of going on a diet for the possibility of maybe controlling my seizures without medication. Of course, I suppose the possibility exists that Keppra could stop controlling my seizures, or that the control I've experienced thus far is an illusion and I've just simply not had any more seizures for other reasons.

3)How severe are the side effects of your meds?
In my case, I hardly notice the so called "kepprage" that so many people speak of on this forum. I don't see what the big deal is all about. I feel mostly the same way about Depakote and Saphris, which are also "heavy hitter" medications in the side effect department... Aside from being allergic to some medications, I rarely experience side effects from medication.

4)Do you believe your meds cause long term side effects perhaps more subtle but dangerous over time? Does this bother you?
Of course taking any medication will effect your liver and the rest of your body. But if you weigh the advantages against the disadvantages, you'll probably find you're on the winning end of the spectrum anyway. For critical aspects of this, your doctor will request lab work to make sure you are ok. If it weren't okay long-term to take any medicine, it would not pass clinical trials, or it would be prescribed as a short-term use only medication.

5)How much faith, if any, do you have that any non-pharmaceutical treatment will make any difference?

Honestly, not much. There is a reason doctors prescribe medication and not ketonegenic diets and fasting like they used to. Medications allow a more normal lifestyle, simple as that. If you want to try diets and supplements to control your epilepsy and can invest the time and effort then more power to you, but not everyone has the time or desire.

6)What would you have to "give up" and how important is it to you, how hard would it be?
Well, the main thing about a Ketonogenic diet is lower intake of carbohydrates. So that means no soda, no beer, no pizza, no sugary treats, and the list goes on.

7) Individual, personal factors in your world making you more/less risk averse.

I live alone and to me that is a factor in managing my seizures. It is not a factor in how they are managed per say, just that they are managed. So far, Keppra has done a fantastic job so I don't see any reason to change that and throw off what could be a delicate balance. That said, I am considering and have started to take coconut oil and magnesium supplements.

I am not particularly concerned about losing my job as an engineer as I work for a good, solid company and have excellent benefits. Being able to drive is something that I would like back and that too requires control of the seizures.
 
I am happy for people who can chose pizza and beer over a non-seizing brain. I sincerely wish I could.

So what's worth it? Anything.

Yes, I think there is a whole different analysis of what is worth it when talking about your child particularly one with such severe symptoms. You and the other parents around here are better people than a lot of us could ever hope to be. Hats off to you for your selfless dedication.
 
Not to make too much of my friend's "pizza and beer" example but, the reason it puzzled me was that that particular individual has severe seizures which are only partially controlled on some seriously heavy meds with some nasty side effects but yet was unwilling to even contemplate giving diet and lifestyle modifications a try.

One thing he said stuck in my memory. He said, "I'm not going to change who I am for epilepsy". OK, I guess if you feel changing from pizza and beer to salmon and a salad would make you a different person... (???)

Yes, that is his right to make his choices, I know. It just baffles me.

Now if a person honestly doesn't believe that any diet and lifestyle modifications do anything at all......OK. But this person was also telling me, "Yeah, I know I probably should eat better and quit the cigarettes......but...<insert long list of excuses here>......it's not going to happen".

I just don't get it.
 
But this person was also telling me, "Yeah, I know I probably should eat better and quit the cigarettes......but...<insert long list of excuses here>......it's not going to happen".

I just don't get it.
This is probably overanalyzing the situation, but we're not talking about cigarettes, we're talking about epilepsy. Quitting smoking is proven to be beneficial. Eating a ketonogenic diet is not. It has been shown to help most people, and a select few of that group it helps significantly, but it does not help everyone.

Personally, I can relate to what your friend is saying. I am not going to give up smoking the ocassional cigar just because smoking is bad for my health. Your friend probably doesn't want to give up beer and pizza, he just wants to live a normal lifestyle like the rest of us. I wouldn't call that an excuse.
 
Without medication, there are times when my brain is just soup.
I think this is one of those things that can cut both ways too. For some people, without the meds they have soup for brains because of the seizures. For others it is the meds causing the soup brains. I've been on both sides of this.

I think that if one opts for pharmaceutical treatments it is important to find the right dosage. I know that there is a marked difference in alertness in me since I have cut my phenobarbitol dose.
 
Seizures can change and having minor seizures can eventually lead to more serious seizures if untreated. This is my point.
And it's a good one. My seizures have stayed exactly the same for 30+ years, if anything they have gotten less severe. So, at this point in my life, I don't see this as a concern but I can see why a newly diagnosed person might.

I know what a ketonegenic diet is, but I have no desire to put myself through the effort of going on a diet for the possibility of maybe controlling my seizures without medication.
I hope you also know that full bore keto is not the only dietary intervention possible.

If it weren't okay long-term to take any medicine, it would not pass clinical trials, or it would be prescribed as a short-term use only medication.
There I must disagree with you. Medications are given out long before any long term testing can be done. We are all the guinea pigs.

There is a reason doctors prescribe medication and not ketonegenic diets and fasting like they used to. If you want to try diets and supplements to control your epilepsy and can invest the time and effort then more power to you, but not everyone has the time or desire.
There is also the factor that doctors don't have the time in our modern medical establishments. It's easier and more cost effective for doctors to give a bottle of pills instead from HMO's POV.

So far, Keppra has done a fantastic job so I don't see any reason to change that and throw off what could be a delicate balance. That said, I am considering and have started to take coconut oil and magnesium supplements.
YAY!!!!!!! Thank you for pointing out that this doesn't have to be and either/or decision in all cases. Nothing wrong with both. Meds don't always work and neither do non-med treatments. Combining the two improves your chances.
 
I should have said that my brain is already soup without medication. It is "seasonally" functional. When it works, it works. I just have to wait to have those seasons again. It seems cyclical, and is remarkably linked to my digestion and weakness. Like Bidwell, I have a difficult time absorbing new information. The soup without medication is better than the soup with medication. Maybe the devil you know is better than the devil you don't know.
 
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This is probably overanalyzing the situation, but we're not talking about cigarettes, we're talking about epilepsy. Quitting smoking is proven to be beneficial. Eating a ketonogenic diet is not. It has been shown to help most people, and a select few of that group it helps significantly, but it does not help everyone.

Personally, I can relate to what your friend is saying. I am not going to give up smoking the ocassional cigar just because smoking is bad for my health. Your friend probably doesn't want to give up beer and pizza, he just wants to live a normal lifestyle like the rest of us. I wouldn't call that an excuse.
Ketogenic diets are actually proven to be highly effective for a wide range of people (I never said everyone). The initial research was done only on children and only those with refractory E but that is not the case anymore. The Johns Hopkins website has lots more details. It also has lots more info about the work being done with less restrictive protocols such as the Modified Atkins Diet for adults.
There are also the Specific Carb Diet, the Low Glycemic Index Diet, the GARD protocol and Low Carb Paleo (two of my favorites) and many others.

So, it doesn't have to be either keto or the Rx. Lots of options.

As far as living a "normal lifestyle" goes, at the risk of stating the obvious, we are not "normal". (Kinda joking but kinda not there.) :)

Having a chronic condition for me means being willing to make some modifications to my particular "normal". I go out with my friends and want to be normal so I have a couple of drinks and I am going to have a seizure that night. In the tradeoff between being "that person" ordering a soda water with lime while everyone else orders cocktails and being the person having a seizure, I really don't care much about being normal.

And I know that cigarettes are not really the issue here but I was talking about all the things we humans do that can and do affect our overall health. Like I'm trying to point out in my sig, the brain is part of the body, not something separate. Things that are not good for our overall health are going to affect our brain health. Weather or not that that effect is large enough to cause a seizure is an individual thing. Also whether or not that effect is felt right away like with me ordering a drink or down the road like me having kidney failure in 30 years is also an individual thing.

Healthy people without chronic conditions can "get away with" a lot more in the way of things like pizza and beer. "All things in moderation" and the body handles it and goes on.

Many AEDs have the side effect of impairing nutrient absorption. So those of us who take them have to eat healthier and/or supplement like crazy just to break even.

Anybody can have a seizure if their body is pushed to the extremes. Those of us who are "not normal" just have a lower threshold, a lower tipping point where "an occasional indulgence" becomes a problem. And it varies from person to person. Even among the proudly "not normal", there is no one normal.
 
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I should have said that my brain is already soup without medication. It is "seasonally" functional. When it works, it works. I just have to wait to have those seasons again. It seems cyclical, and is remarkably linked to my digestion and weakness. Like Bidwell, I have a difficult time absorbing new information. The soup without medication is better than the soup with medication. Maybe the devil you know is better than the devil you don't know.
And this is the cost/benefit analysis that works for you. And as you said in your earlier post, you know your own body better than anyone.

For me it seems that the soup I can deal with is the kind when on the *minimum* amount of meds and the maximum amount of healthy diet/lifestyle. The soup unmedicated is horrible and the soup on the full Rx is only marginally better. I'm finding something that works for me in between.

If I have to, at least in the short term, resign myself to taking meds, (as much as I would like to chuck them and run, I know that's not sensible), I have decided that I am going to give my body the best chance possible at mitigating the negative effects by keeping the diet clean, exercising, getting enough sleep, etc. I don't want to pile any extra toxins like alcohol, MGS, aspartame, gluten in. My body is working overtime as it is to deal with the meds.
 
Anybody can have a seizure if their body is pushed to the extremes. Those of us who are "not normal" just have a lower threshold, a lower tipping point where "an occasional indulgence" becomes a problem. And it varies from person to person. Even among the proudly "not normal", there is no one normal.

The author of the pharmacology book I finished reading a bit ago stated that everyone is a few extra action potentials per second away from having a seizure. When you think of it that way, those of us with E are not that different. Small changes can make a significant difference.
 
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