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?
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?