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lorienlouise

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I am new, and am looking for opinions about coming off meds and move to natural supplements to help control fits, I have a brain tumour which is stable at mo, its a wait and see..last 3 scans have been stable, I feel I am at a point that after chemo and constant meds for 5 years, I want to start looking at getting off poisons meds that make me feel horrible.
Obviously I am at the first point of that journey and wondered if anyone can advise on the first step please?
 
lorienlouise

First, you are very welcome to C.W.E. you will find good people who will help you here.

Advice can be a bad thing but what I will say to you is, you need to be very careful coming off you medication first that you do not have more seizures because natural supplements although good do not suit all of us, it might turn out that you will be able to lower the amount of medication and supplement with natural products and in time maybe come off your medication.

That being said there are diets you can try using which might work for you, like M.A.B. (the modified Atkins diet) which you can read about in another part here.
 
Hi, Thank you for replying, I will certainly read up about M.A.B diet, there seems to be so many herbal supplements that its hard to wade through!..I did have vit D before and think keppra reacted with it, so felt awful and dizzy and had to lie down!
Still, I will keep at it, until something suits! thank you
 
A lot of people don't agree with it, have you ever thought of trying CBD oil or paste as a supplement?

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Hi,
Thanks for response, as I am only just starting my research in coming off meds and looking at natural remedies any info would be grateful x
 
I have just started taking charlottes web cbd oil as a supplement, it may be worth researching.

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Hi lorienlouise, welcome to CWE!

As mentioned above, everyone reacts differently, and not everyone can control their seizures with alternative approaches. You should be very careful if you are aiming to reduce your medications or go med-free entirely, and you should definitely keep your neuro in the loop. (I've tried several times to go med-free, without success.).

Here's a good place to start for general info: http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

This link will take you to the CWE forum that focuses on diets:
http://www.coping-with-epilepsy.com/forums/f39/

You might also take a look at this book: [ame="http://www.amazon.com/Epilepsy-New-Approach-Adrienne-Richard/dp/0802774652"]Epilepsy: A New Approach: 9780802774651: Medicine & Health Science Books @ Amazon.com@@AMEPARAM@@http://ecx.images-amazon.com/images/I/51p9fv6oOYL.@@AMEPARAM@@51p9fv6oOYL[/ame]

Generally speaking, supplements for epilepsy either complement a low carb/low-glycemic style diet (for example, coconut oil), address a nutritional deficiency (for example, magnesium), or have a drug-like effect (for example, CBD oil). You'll find a lot of interest and anecdotal advice here at CWE, but no single path that can be guaranteed to work for you. If you are making substantial dietary changes, it's a good idea to consult a nutritionist in addition to your regular doctor and/or neuro. And you may need to be patient -- for many, dietary changes can take a few months to have an effect, and there can be an element of trial and error.

Finally, don't despair if you continue to require anti-seizure meds. There are many different ones out there to try, and you may find something that is more tolerable than the ones that are problematic now.

I hope you continue to have stable health. Congrats on being done with chemo!

Best,
Nakamova
 
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The book Nak recommends above is a good one and I also find this one to be helpful and well researched:


[ame="http://www.amazon.com/Treating-Epilepsy-Naturally-Alternative-Therapies-ebook/dp/B000V3URTA/ref=sr_1_1?s=books&ie=UTF8&qid=1446949995&sr=1-1&keywords=treating+epilepsy+naturally"]Treating Epilepsy Naturally: A Guide to Alternative and Adjunct Therapies - Kindle edition by Patricia Murphy. Health, Fitness & Dieting Kindle eBooks @ Amazon.com.@@AMEPARAM@@http://ecx.images-amazon.com/images/I/51kHJvHPg2L.@@AMEPARAM@@51kHJvHPg2L[/ame]

Welcome.
 
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I would talk to your dr before you stop taking your meds. He would probably wean you off of them, it might be safer to do it that way instead of doing it yourself or just stop taking them all together. There also be certain foods or vitamins that you shouldn't be taking while you are still on one of the meds.
 
I agree with the others who have said to make sure your neurologist is involved as you try to wean off the medications. He or she will likely advise against going off the medications, but if the doctor is a good one s/he will still guide you through the process of tapering down the dosages and perhaps can assist you as you try some of the alternative treatments you are considering. And as valeriedl says, there are some alternatives/supplements that should not be used in conjunction with an anti-seizure medication or in conjunction with one another.
 
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