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

[seagull]

medical science improves all the time aloha...is it gentic what you have...one kidney often gets bigger to compensate for other one ..What is TMI is it bad thing?

 

[qtowngirl]

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.

aloha this is simply a matter of 'until you've walked in someone else's shoes.....'

coming from someone who has gone through severe seizures so much so that i had to have part of my brain removed, i understand and fully agree with your friend. when my szs got worse and i first heard the words 'brain surgery' from my doctor my intense focus on living healthily was skewed. and i don't beat myself up for it at all. to balance from being hit with an intense trauma i needed to allow a few things that made me feel somewhat normal. enjoy a bottle of wine? absolutely. wasn't a big dessert eater but did i start enjoying brownies? damn straight.

epilepsy is a controlling disease we all know that, but some of us also lose control of our lives as a whole, everything from work ability to loss of license to feelings of insanity living at your doctor's office or the hospital. it is vital for those of us to find a way to balance out our rationality, fears, sadness, and everything in between. and hell, if our meds don't work either way why not enjoy a beer and pizza, or wine and chocolate, we're going to seize whether we do or not so we may as well. more than fair.

tbvh, in 21 years with epilepsy i would give anything to only be nocturnal. i am NOT saying that your life is easy and that it's not heartbreaking to live with bruises and swollen tongues, believe me i know your situation sucks too. however, you fully admitted his situation is much more severe, so until one knows what the other person feels like, it's a favour to your friendship not to judge.

hugs from one E warrior to another girl

:hugs:

 

[AlohaBird]

aloha this is simply a matter of 'until you've walked in someone else's shoes.....'

if our meds don't work either way why not enjoy a beer and pizza, or wine and chocolate, we're going to seize whether we do or not so we may as well. more than fair.

it's a favour to your friendship not to judge.

:hugs: back atcha.

This thread is all about describing to each other exactly how our shoes fit us.

And I have been in that place where the meds didn't work so I said "eff" this and went for more than just a pizza and a beer as a way of feeling some sense of "this is my body. If I want to party, I'm going to seriously party. I have flipping epilepsy. I deserve to have some fun too."

So I am not judging at all. Been in those moccasins for miles.

But at that time I had no idea that there were other meds out there that might work. I also had no idea that diet/lifestyle factors even mattered. This was also at a time when there was no net to go look these things up on. (I know that might be kind of hard for some of the younger folks around here to comprehend).
I was young and I only knew what one neurologist had told me, one option, "Take these pills", which didn't work and made me feel like my brains had been put in the Vitamix. Then I stopped having health care because I graduated from college and went unmedicated for a while because nobody would give me coverage with this pre-existing condition.

But, after I started getting some control of the seizures through diet/lifestyle changes I didn't want to jeopardize that.

My friend is not in a situation of nothing works so what the heck. He has a fairly good degree of control with meds and realizes *and even says* that cleaning up his health habits would probably give him more control but won't even consider doing it.

As I have *repeatedly* said on this thread, I'm not expressing judgement, just incomprehension. Why the unwillingness to even try? If you don't like it or it doesn't work, or the tradeoff between what you might gain and what you might have to give up turns out not to be worth it, what did you lose by giving it a whirl? Not your identity, not your freedom, just a few pizzas and beers.



BTW, The issue of health care would be another good question for the "considerations" list in the OP. "How easy is it for you to get access to a neurologist?" Fedup was recently given an appointment date for September of 2016. Not a typo unfortunately.
Perhaps if a person has better health care access, they would not feel as much need to seek out non-pharmacuetical treatments on the web.

 

[seagull]

It relative..i would be pretty pi88ed if I given up all the good things in life like cream cakes etc then had heart attack at 60 may aswell go back to things I like...I do so many things I not surppose to (I not advocating other to do it) my confidence is not as it used to be so I glad I lived as I wanted to take my chance with e alto I think the e maybe winning at this moment

 

[Mr.21T]

I was just posting things that troubled me, though it was a quote, the information was listed along with all other side effects that patients could expect while using the drug.

I understand that drugs can often be a person with e's only method of treatment, and that people like me with TLE can often be paranoid about common things like this...and it can be off-putting to others, especially others who depend on these drugs for their livelihood. It's not my intention to discourage use of your prescribed medication. Your decision and basis on which you make your decision, is yours and mine is mine. Mine is simply to have as little dependence on AEDs as possible.

But I agree with the later posters who say "F it" and live life! At least partially. For me it was a step forward in wanting to get better. At the time I thought getting better was impossible, so I just sought to feel better. Actually going out against family's wishes, staying up late with friends, and having new experiences is thrilling and eventually you do feel better and get some self-esteem. But then the burdens of e come knocking. From there hopefully you make strides to actually be better and shed all of the stuff you now KNOW contributes to your bad days.

 

[Dutch mom]

If there was a drug that helped my son to be seizure free without too many bad side effects, I would exchange the keto diet immediately for it. I am absolutely not against drugs that do help people. But I am against giving more and more drugs -especially to children- when they don't do any good.

Within 5 years we have tried valproate (Depakine + Orfiril), ethosuximide (Zarontin + Ethymal) topiramate (Topamax, tablets + spinkles), clobazam (Frisium), clonazepam (Rivotril), levetiracetam (Keppra), lamotrigine (Lamictal), Luminal (phenobarbital), felbamate (Taloxa) before trying the keto diet 11+ years ago. Most time he got three meds in combination, two anti epileptics and one benzo. Most time he was on the maximum doses for his age and weight.

We have seen swollen and bleeding gums, rash, severe constipation, severe diarrhea, hyperactivity, insomnia, grogginess, complete lethargy, hallucinations, refusing to drink, gaining weight. loosing weight, tremors.

Several of the current/new meds were not on the market yet when we started him on the keto diet. But later on his former neurologist one by one suggested us to try rufinamide, gabapentine, pregabaline, lacosamide, zonisamide and diacomit as adds on the diet to try to get him 100% seizure free.

Why, I never understood. The diet has improved his EEG over 70% and decreased his seizures about 80%. He still has tc seizures but they last very short. Why would we try more meds and risk their side effects while before so many meds did nothing for his seizures? The chance a patient with Lennox Gastaut syndrome and severe brain damage will be seizure free is too small to let him suffer more side effects.

The keto diet is not easy, not for us and not for him, it is more and more difficult to cook as he gets older and the diet restricts him enormously. Furthermore the diet has side effects too. But he is monitored very close, twice a year a grand check up in the children's hospital. For over 11 years on the diet his growth is okay, he never had to high cholesterol, no kidney stones and the ECG always shows he has a very strong heart.

But we do still struggle with the constipation, a common side effect for wheelchair bound persons and influenced by the diet too.

Most important: when he was six months on the keto diet we started to wean of the 3 meds he had one by one: topiramate (second try), ethosuximide an clobazam (clobazam was the worst to wean of.) Since he got no meds anymore, the effect of the keto diet became more stable. This convinced me the diet and meds don't go together, at least, not for him.

Suppose the diet wouldn't work anymore? Would we try meds again? Perhaps we would many new meds are on the market since then. Perhaps we would not, because I seriously doubt meds will help him ever.

 

[Nakamova]

It's certainly not easy to know which treatment path to try, or when to try something else. Each person brings to the process certain beliefs and attitudes that can both consciously and unconsciously influence the choices we make. For those interested in the topic, I highly recommend Your Medical Mind: How To Decide What Is Right For You. (See http://jeromegroopman.com/your-medical-mind.html.) The book is written by a husband and wife team, both of whom are doctors. It draws on patient interviews as well the authors' own experiences. Especially interesting to me is that the authors have very different treatment preferences from one another when they are patients themselves.

The authors don't shy away from discussing the frustrations and failings of mainstream health care. Among other things, they analyzed 100 best practices put together by committees in internal medicine, and discovered that 14% of those "best practices" were contradicted within a year. Within two years, a quarter of the best practices were contradicted, and by five years, almost half of the rules were overturned. In this kind of climate, making treatment decisions can be bewildering for both the docs and the patients.

The authors found that patients tended to fall into two categories when it came to treatment: Believers and doubters. "The believers are convinced that there's a good solution to their problem and they just want to go for it. Sometimes they are believers in technology, sometimes they are believers in more natural remedies, but they believe. And the doubters are people who are always skeptical, worrying about side effects, worried about risks and that maybe the treatment will be worse than the disease." These aren't hard -and-fast categories, and they obviously fall along a spectrum, but I found it useful to see how that one the most significant decision-making factors is not about whether we specifically embrace "conventional" vs "alternative" treatments, but to what extent we embrace treatment at all.

 

[Nakamova]

I am one of those people "with great control and minimal-to-no side effects." This hasn't made me close-minded towards novel approaches, though. Quite the opposite. My interest in alternative approaches is what brought me to CWE in the first place and is one of the many reasons that I continue to hang around.

But my current risk/reward treatment assessment pivots on "independence". For me, this means being able to take care of myself and others in a way that requires stable health and the ability to drive. Because my seizures are tonic-clonics that arrive without warning at any time of day or night, the potential for injury to myself (or to someone else) is very real, as is the possibility of losing my driver's license. I would adjust if they were to be happen again, but not being able to drive would fray some important connections to friends and family.

In the past I've chosen to taper off medication (unsuccessfully). As my priorities and responsibilities have changed, I've made the choice to put up with the stuff instead. My underlying attitude towards mainstream medication hasn't changed -- I still don't like it, and I still worry about both long- and short-term side effects -- but the necessity of my remaining seizure-free has.

I realize that "choosing to be seizure-free" is not an option for most CWE members. I wish that treatment choices could be as clear for everyone with epilepsy.

 

[AngelaVA]

I will answer for my 6 year old the best I can

1) the complex partial seizures cause her to be too exhausted and confused to engage well in life, she is lonely isolated and overwhelmed much of the time. TC occurring 1-2 times a month causing a few minor injuries

2) has gone up to a month without a seizure usually has about 3 good weeks out of the month and one week of seizures and side effects that are not quite as bad as when she was off meds entirely but comparable.

3) right now we aren't have any noticeable side effects

4) I think there is potential for long term side effects but greater potential for damage from the seizures themselves

5) little, mainly because we have been very "crunchy" since before this child was born, organic, grass fed dairy, coconut oil, fish oil supplements, probiotics, cultured food, lots of vegetables, no bad food additives ect was part of our lives even before this child was born, yet she still has epilepsy. Adding grain free GAPS diet was ineffective also, even though the diet is touted as an anti epilepsy diet as well.

I think there are likely some herbs that could control her seizures, but then would they really be safer with fewer side effects than the medications? Herbs are risky too.

6) not sure how to answer this, at this point I'm no longer willing to have her give up her favorite foods because it simply doesn't seem to work. Not sure what else she "could" give up, she obviously doesn't smoke or drink

7) she is at the age where uncontrolled seizures really put her behind developmentally


Sent from my iPhone using Tapatalk

 

[AlohaBird]

It relative..i would be pretty pi88ed if I given up all the good things in life like cream cakes etc then had heart attack at 60 may aswell go back to things I like...I do so many things I not surppose to (I not advocating other to do it) my confidence is not as it used to be so I glad I lived as I wanted to take my chance with e alto I think the e maybe winning at this moment

Any one of us could get hit by a bus or have a meteor fall on our head so we are never going to be able to control every factor. We do the best we can. We can't know if the things we are doing now to help prolong our lives will work but we can at least try. Don't wave the white flag to e yet, seagull.

 

[AlohaBird]

I was just posting things that troubled me, though it was a quote, the information was listed along with all other side effects that patients could expect while using the drug.

I understand that drugs can often be a person with e's only method of treatment, and that people like me with TLE can often be paranoid about common things like this...and it can be off-putting to others, especially others who depend on these drugs for their livelihood. It's not my intention to discourage use of your prescribed medication. Your decision and basis on which you make your decision, is yours and mine is mine. Mine is simply to have as little dependence on AEDs as possible.

But I agree with the later posters who say "F it" and live life! At least partially. For me it was a step forward in wanting to get better. At the time I thought getting better was impossible, so I just sought to feel better. Actually going out against family's wishes, staying up late with friends, and having new experiences is thrilling and eventually you do feel better and get some self-esteem. But then the burdens of e come knocking. From there hopefully you make strides to actually be better and shed all of the stuff you now KNOW contributes to your bad days.

Your concerns are valid ones. I share your goal of minimizing AED dependence.

That's an interesting point you make about the distinction between *getting better* as opposed to *feeling better*. If you don't see getting better as a real possibility then feeling better would be the next best thing.

 

[AlohaBird]

If there was a drug that helped my son to be seizure free without too many bad side effects, I would exchange the keto diet immediately for it. I am absolutely not against drugs that do help people. But I am against giving more and more drugs -especially to children- when they don't do any good.

The diet has improved his EEG over 70% and decreased his seizures about 80%. He still has tc seizures but they last very short. Why would we try more meds and risk their side effects while before so many meds did nothing for his seizures? The chance a patient with Lennox Gastaut syndrome and severe brain damage will be seizure free is too small to let him suffer more side effects.

This shows how being risk-averse is not just for people who opt for traditional pharmaceutical treatments. This shows how a long history of drugs not working can make staying with a non pharmaceutical option the safe and sensible pathway.
DutchMom, I continue to marvel at the positive beautiful energy of your whole family.

 

[AlohaBird]

Your Medical Mind: How To Decide What Is Right For You. (See http://jeromegroopman.com/your-medical-mind.html.)
The authors don't shy away from discussing the frustrations and failings of mainstream health care. Among other things, they analyzed 100 best practices put together by committees in internal medicine, and discovered that 14% of those "best practices" were contradicted within a year. Within two years, a quarter of the best practices were contradicted, and by five years, almost half of the rules were overturned. In this kind of climate, making treatment decisions can be bewildering for both the docs and the patients.

The authors found that patients tended to fall into two categories when it came to treatment: Believers and doubters. "The believers are convinced that there's a good solution to their problem and they just want to go for it. Sometimes they are believers in technology, sometimes they are believers in more natural remedies, but they believe. And the doubters are people who are always skeptical, worrying about side effects, worried about risks and that maybe the treatment will be worse than the disease." These aren't hard -and-fast categories, and they obviously fall along a spectrum, but I found it useful to see how that one the most significant decision-making factors is not about whether we specifically embrace "conventional" vs "alternative" treatments, but to what extent we embrace treatment at all.

Interesting concept, the believers vs doubters. I wonder if to some extent being a believer or a doubter is shaped by ones early experiences with doctors and their "best practices".

My first experience with neurologists was a bad one and then being left without any health care for a while I learned a distrust for the medical system. I found "alternative" remedies completely by accident. I was cleaning up my diet to get into body building and my seizures dropped off dramatically.

Perhaps instead of believers/doubters, one could make a distinction between believing in information that comes from an outside source (be that a doctor with a pill bottle or a guru with a tea) vs believing in something you figure out and test yourself.

 

[AlohaBird]

I am one of those people "with great control and minimal-to-no side effects." This hasn't made me close-minded towards novel approaches, though. Quite the opposite. My interest in alternative approaches is what brought me to CWE in the first place and is one of the many reasons that I continue to hang around.

But my current risk/reward treatment assessment pivots on "independence". For me, this means being able to take care of myself and others in a way that requires stable health and the ability to drive. Because my seizures are tonic-clonics that arrive without warning at any time of day or night, the potential for injury to myself (or to someone else) is very real, as is the possibility of losing my driver's license. I would adjust if they were to be happen again, but not being able to drive would fray some important connections to friends and family.

In the past I've chosen to taper off medication (unsuccessfully). As my priorities and responsibilities have changed, I've made the choice to put up with the stuff instead. My underlying attitude towards mainstream medication hasn't changed -- I still don't like it, and I still worry about both long- and short-term side effects -- but the necessity of my remaining seizure-free has.

I realize that "choosing to be seizure-free" is not an option for most CWE members. I wish that treatment choices could be as clear for everyone with epilepsy.

This is a very well reasoned and articulately stated summary of your decision process (what else would one expect from Nak? )

It looks like the main factor that makes yours and mine different is that mine are nocturnal. If I felt I could be a danger behind the wheel, that would make a world of difference.

 

[AlohaBird]

right now we aren't have any noticeable side effects

I think there is potential for long term side effects but greater potential for damage from the seizures themselves

we have been very "crunchy" since before this child was born, organic, grass fed dairy, coconut oil, fish oil supplements, probiotics, cultured food, lots of vegetables, no bad food additives ect was part of our lives even before this child was born, yet she still has epilepsy. Adding grain free GAPS diet was ineffective also, even though the diet is touted as an anti epilepsy diet as well.

I'm no longer willing to have her give up her favorite foods because it simply doesn't seem to work.

she is at the age where uncontrolled seizures really put her behind developmentally

This sounds like a very reasonable cost/benefit analysis is your situation. The drugs work, the alternative stuff doesn't and the side effects of the seizures are more harmful that the potential long term sdie effects of the meds.

BTW, I love that term "crunchy" you used. I've never heard that one before but it's a good one.

 

[zombelina]

The authors found that patients tended to fall into two categories when it came to treatment: Believers and doubters

I wonder if to some extent being a believer or a doubter is shaped by ones early experiences with doctors and their "best practices".
My first experience with neurologists was a bad one and then being left without any health care for a while I learned a distrust for the medical system.

I am a little more of a doubter myself. I think early experiences have A LOT to do with it. I get very nervous and fearful at doctor's appointments. Even when I worked in healthcare, it did not change the insecurity I feel as a patient.
It has taken me a very long time to find a doctor that I trust, and even then I have my moments of mistrust, fear, shame.

 

[KarenB]

The choice for us (currently) is a low dose of meds and the Ketogenic diet.

Most meds don't work for Jon, none works completely to stop all the seizures and they all cause horrible side effects. The Ketogenic diet enables us to have good control on a very low dose of meds, so optimal in terms of few side effects.

The Keto diet is a pain in the butt (for me) -- having to make sure we always have his food stocked, having to make 2 separate meals -- one for him and one for the family --every meal. Having to pack a meal for him whenever we go out to eat, and having to do a lot of planning ahead and cooking and freezing up whenever we travel. No spontaneity -- no just swinging by to pick up supper somewhere.

But he seems totally fine with it all. He enjoys his meals and doesn't seem to covet what other people are eating, most of the time. So...I guess it's worth it. I think it might be more different for an adult who was more entrenched in eating patterns, or drinking or whatever.

 

[Blonde Angel]

We recently last weekend had my Mothers Birthday to celebrate. We all enjoyed a very yummy big no no sponge cake filled with custard and cream.
Guess what no seizures but some signs of hyped up activity later that Sunday...
But no seizures.
I'm still racking my brain what happened last Tuesday (18th August)when she last had her seizure.. Checked my diary for anything different to the norm.. Zilch...
Dunno what happened.
I think a sense of control and quality of life is important.

I will continue to try to find answers for my girls Autism and Epilepsy with not just nutrition, but I want all of us to have quality of life to enjoy our something's and someone's. I want her to communicate effectively, I want her to be happy as much as possible.
But I can't forget about my twin boys, my husband and my needs and wants.
Otherwise no one is happy .

 

[AlohaBird]

I am a little more of a doubter myself. I think early experiences have A LOT to do with it. I get very nervous and fearful at doctor's appointments. Even when I worked in healthcare, it did not change the insecurity I feel as a patient.
It has taken me a very long time to find a doctor that I trust, and even then I have my moments of mistrust, fear, shame.

My early experiences with doctors taught me that they are human and so are fully capable of being wonderful, well informed, and kind or ignorant, heartless jerks. They are definitely not gods and don't hold the monopoly on truth, IMO.

Don't ever let anyone make you feel ashamed, Z.

I think the point Nak was making was about someone having a tendency to believe or to doubt regardless of the source of the information/advice.

What I learned was self reliance. I read, I research, I check things out. There are some MDs passing out info on the web who are blithering idiots if you really look into it and there are some folks with no medical degrees but with a lot of sound info. And the reverse is true too. It's a case by case basis.


The points made by the two mums, Karen, and BA are interesting to me because they show how much the process can be different if you are making the decisions for a child particularly one who is not able to verbalize exactly what they do or do not need.

When it is your own body you can feel if there is something amiss but from the outside looking in, it must be very hard to judge exactly what to do.

 

[KarenB]

I agree about the self-reliance thing. I've had to become much more proactive as a Mom -- both in working with his docs as well as keeping on top of the research.

Which reminded me that I forgot to mention the Mozart effect -- we'd already woven classical music into the daily routine, but was excited to read research into how 2 of Mozart's sonatas have a marked effect on reducing epileptic spikes in EEGs and in reducing seizures. It's incredibly easy to work music into the day -- nothing to give up really.