“The verdict was medication for at least 10 years”

Is medication the only alternative for epilepsy? No. A strict low-carb diet is an accepted and effective treatment for children with epilepsy, who cannot be treated in any other way.

But why only try a dietary change when nothing else works?

I got an email from Emma, 20, who suffered an epileptic seizure in her teenage years. Here’s her story about what happened when she chose a different alternative on her own:

The email

Hi Andreas!

I must start by saying that I think you’re fantastic for everything you do and that you stand by what you say, despite all conservative people who think that everything should be done “the way it has always been done” and think this is the only right thing to do. You are truly inspiring!

Anyway, I read the recent post about epilepsy and a ketogenic diet, and saw that you recommended others to send in their stories too. I’ve thought about it several times, but never got to it until now. My story may not be so special, but it’s still a testament to the power we actually possess when it comes to our health and our own lives.

My name is Emma and I’m 20 years old. I’ve exercised my whole life and always been naturally lean and therefore never had to pay attention to my weight or what I ate. This meant that I consumed a great deal of sugar and not until today have I realized that this was really bad. I was never able to quit, but neither did I see a reason to.

However, this changed when I had just entered my last year in high school, in the fall of 2012. After just a week in school I suddenly suffered a seizure and was sent by ambulance to the emergency room. I, of course, had no memory of the incident and got a nasty shock when I woke up in the hospital. The last thing I remembered was that I was participating in a discussion in class. The biggest shock, however, came when the doctors feared epilepsy and wanted me to come back for an EEG test. There and then I thought my life was over. I couldn’t understand why this would happen to me and I went through the whole “life is so unfair” thing. Throughout the fall and most of the winter, I went in for various tests but never got an answer to what was wrong. The time in between test results I just spent waiting, not being able to really live. I was terrified it would happen again.

In December, I had an appointment with a neurologist, who was to give me the final verdict based on the test results. According to him, I had suffered an epileptic seizure and I’d most likely have another one. The verdict was medication for at least 10 years. To someone who had NEVER taken a synthetic drug in her whole life this was a blow. He might as well have said that I had 10 days left to live. That the neurologist was so adamant and didn’t see any other way made me frustrated, but thankfully I did have a choice after all. Obviously, I did get to decide whether to go on medication, or not. So with his words “there will be more seizures” echoing in my head, I went home to ponder.

Here’s the part that I’ll be forever grateful for, partly because my mother is very ambitious when it comes to finding alternative approaches to conventional health care, but also because there actually is information about the connection between epilepsy and diet on the internet. We read everything we could find on a ketogenic diet and how this is actually used to cure children with difficult cases of epilepsy and I became more and more convinced that this was something I should try. There and then I made my decision. I ignored the doctor’s warnings and declined medication and changed my diet to LCHF.

For the first time in my life I managed to make changes in my eating habits. I managed to quit eating sugar and I noticed with time how great I felt. I felt more energetic, healthier and my sleep improved. However, most important of all was that I didn’t suffer another seizure and I stopped being afraid of having to go through the same nightmare again. And even though many questioned the method, I believed in it, because to me everything was so much better without medications. I really believe in this and will never look back and regret my choice, as it is the best choice I’ve ever done.

Today I eat a relatively liberal LCHF diet as I’ve learned what works for me and makes me feel good. Almost two years has gone by since my first and only epileptic seizure and nothing similar has happened since then. Were the doctors wrong? Was this perhaps just a one-time incident? Or would I have continued to have seizures if I hadn’t made some changes?

I actually don’t think this is relevant and I don’t care about the answers, because I know I feel great and that I’ve never felt better and I have a lot to thank the ketogenic diet for. Today, I can believe that things happen for a reason and that we can always learn from our experiences and benefit from them.

However, there are a few questions I’m still asking today: Are they really that ignorant? And why does medication always have to be the only right thing?

/ Emma.

Comments

Congratulations on your success, Emma!

Of course, in cases like this we can’t tell with certainty what impact diet has had. As Emma puts it herself – perhaps she would never had suffered any more seizures with her old diet either.

However, it has recently become quite accepted that a strict low-carb diet is an effective treatment for severe epilepsy. It has even been proven effective in adults. The question is then why there aren’t any studies on whether a more moderate LCHF diet – like the one Emma has chosen – would be enough for milder cases of epilepsy.

To my knowledge there are no studies on the subject. And the sad truth is that most of the research in this area is funded by the pharmaceutical industry and they of course are not interested in researching how many people can manage without their medications. It would be irresponsible towards the share holders.

For physicians it’s also much easier to keep things the way they are. And to write a prescription – or two or three – is a lot easier than discussing lifestyle changes.

As long as epilepsy medications have nasty side effects – reduced mental clarity, for example – there are good reasons to think that people with epilepsy have a right to knowledge and information to make their own informed choices.

This shouldn’t be something that affected people should have to dig up themselves on the internet. But so far, this is their only option. The health care system is unfortunately still fixated on pills as the only first choice of treatment for epilepsy.

Do you have any experience of treating epilepsy with diet?

For those suffering from epilepsy

People suffering from epilepsy on antiepileptic drugs, who start to eat LCHF, should of course not just stop taking their medications. It may be dangerous to go off these medications abruptly.

In these cases I recommend discussing a gradual, slow reduction with your doctor. On a strict low-carb diet you will most likely succeed in being seizure-free with smaller doses, but there are no guarantees that you will manage completely without medication.

Previously on epilepsy and LCHF

How a diet change can free people from epilepsy

Mute girl finally talks on an LCHF diet

NYT: “Epilepsy’s Big Fat Miracle”

Study showing benefits from a strict low-carbohydrate diet in adults with epilepsy:

• Kossoff et al. A prospective study of the modified Atkins diet for intractable epilepsy in adults. Epilepsia. 2008 Feb;49(2):316-9.

More

Low carb for beginners

Previously on epilepsy

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