By in Health & Fitness

Evening Primrose Oil for Seizures: An Update

I am epileptic. I started having seizures in my late teens, though I didn't realize that's what they were until I had a grand mal in my early 20s, and was diagnosed with a seizure disorder secondary to a really oddball condition called schizencephaly. It's a little like spina bifida, only it happens in the brain instead of the spinal column.

I took anti-convulsants every day for roughly twenty years. My seizures happen to be related to my hormone levels, so at a certain point I realized that I was taking drugs every single day in order to prevent something that would generally only be a problem for a couple of days in a month – a couple of days out of each two weeks, at worst.

I struggled with the fact that these drugs have some pretty hefty side effects – not the least of which is their potential to damage vital organs. I also had trouble with the common attitude that a single seizure – even a mild focal seizure that happened when I had the flu – was “unacceptable” and a reason for doctors to raise doses higher and higher.

I am no longer dependant on the drugs to stave off a grand mal seizure, but I still have a bit of a bumpy ride with the focal seizures a few times a month. A while ago I looked into taking evening primrose oil (EPO) supplements to balance my hormones and eliminate the last few seizures I do get. A week ago, I took the plunge.

I bought a bottle of 500 mg supplements and I started taking two capsules with a meal, three times a day as per the instructions on the label. The first dose that I took just happened to coincide with the first day that I was likely to have a seizure. I already had the aura by the time I took those first two capsules, and later that night I did have three focal seizures.

I'm not really surprised that I did have the seizures, as most treatments need a bit of time kick in – especially herbal supplements, which tend to work by restoring a balance rather than by any really hefty impact on the body or the nervous system. And once the aura has started my brain really does need to complete the cycle to discharge the build-up of electricity that causes the seizures. The main way for that to happen is – well, to have a seizure!

I had expected another two days of seizures, though, and that never happened. I still felt a bit off balance the next day. And really tired – almost as if I were hungover, which is normal. The third day I was tired, and I had a headache. That was probably a side effect of the supplements, and I had moderately painful headaches for about 3-4 days before I stopped noticing them. I suspect my body has adjusted to the supplement in that short time. And that alone is amazing! If the doctor changed my prescription years ago, I'd be walking around like a drunk for two weeks before my body adjusted to a new drug!

I'm not really at risk right now, so it's hard to tell if the supplements are working. But I have been fighting off a virus that my son gifted me with. I've been really tired over the weekend, and I'm mildly feverish. But no seizures at a time when I might otherwise have had one. So things are looking good! And the joint pain I've had with this flu bug has been a lot less severe than I usually get – an added bonus from taking EPO, I think!

If you have a seizure disorder and you've been thinking about trying evening primrose oil for any condition, do proceed with caution. Do your homework, and inform yourself about the potential risks. If you are taking any medication at all, talk to your doctor and pharmacist first. You may also want to talk to an herbalist. EPO does have some side effects, even though it's generally regarded as safe. And data about both the benefits and risks of taking this supplement are inconclusive. More studies are needed. In the end, you may just have to rely on your gut and on the nest advise of your health care professionals. But do be sure someone knows what you're doing, in case you need emergency care.

Have you ever experimented with a natural remedy that's just a little controversial? I'd love to hear about it!

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Image credit: Evening primrose byManfred Antranias Zimmer/ Pixabay ( CC0 1.0 )

Disclaimer: The author is not a health expert. The information contained in this article is not intended as medical advice. Please consult a qualified health professional before making any decisions regarding your own condition.

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mustchoice wrote on January 21, 2015, 2:37 AM

sorry for that, I hope one of this fine days you will be better

MegL wrote on January 21, 2015, 3:03 AM

Fascinating. I had never heard of schizencephaly before, so that's a new learning item! Have you ever tried the Atkins diet? I have heard that epileptic attacks can be kept in check with the types of dietary change that come with a low carb diet but I do not know whether it would work for sshizencephaly epilepsy. I understand that it's the ketolysis, instead of the glycolysis (as a means of getting energy from food) that helps. Hopefull, the EPO will give you good relief in place of the heavy drugs.

celticeagle wrote on January 21, 2015, 5:16 AM

Any help from not having to take drugs is a good thing.

scheng1 wrote on January 21, 2015, 8:56 AM

The doctors may not be competent to know about alternative or natural treatment, unless it has proven to be fatal when combined with medication.

BeadDoodler wrote on January 21, 2015, 9:33 AM

I have never needed to take anything controversial aside from herbs in general (which some medical professionals consider from "pure poison" on down to "iffy", but I do try to keep to the natural remedies rather than pharmaceutical ones. I hope this will one day completely eliminate your seizures.

wolfgirl569 wrote on January 21, 2015, 9:58 AM

I prefer natural treatments over prescription ones any time I can use them. They have a lot less side effects with them. I hope it continues working for you.

Nar2Reviews wrote on January 21, 2015, 10:27 AM

Gosh, you really have quite a few conditions. I feel for you - my uncle is also epileptic but they dont have herbal medicines such as this. One to remember. Mind you, I take herbal tablets to minimise my varicose veins - and it does work!

McIntire wrote on January 21, 2015, 10:48 AM

I think that's great. Since you know what causes your seizures, that info would be most important in trying non-drug therapy. Since my daughter's seizures were NKC, it would be scary for me to substitute anything other than what the doctors approved and what worked.

Ruby3881 wrote on January 21, 2015, 11:17 AM

Meg, best evidence shows that ketogenic diets can be helpful to a very specific epileptic population. As this population tends to be young children who have very severe grand mal seizures that are poorly controlled by meds, I fall very much outside the target group. My seizures are linked to female sex hormones. I have what's called catamenial epilepsy. I didn't have seizures at all when I was a child, and they'll likely stop altogether after menopause.

Ruby3881 wrote on January 21, 2015, 11:24 AM

Very little scientific evidence is available about most herbal remedies. This isn't a fault of the doctors. It's just really difficult to apply the scientific method to an herbal remedy without testing a specific preparation. This is more and more what's happening. Unfortunately, the data from such a specific study are only true for that specific preparation. If I use a different supplement or choose herbal teas as my medicines, my results will vary from the ones obtained in the study.

Ruby3881 wrote on January 21, 2015, 11:28 AM

Um, I don't know how one condition is "quite a few." My seizures are caused by a single condition, which is my primary diagnosis.

It is exceedingly difficult to control seizures with herbal remedies. And if you read the earlier post about EPO (linked above in this post) you can see that there is a possibility that this supplement might lower seizure threshold for some people. That means it could result in a person having more, rather than fewer, seizures. EPO would not necessarily address a man's seizure disorder, as it's not likely to be linked to female sex hormones.

Ruby3881 wrote on January 21, 2015, 12:36 PM

Treating any seizure disorder with natural remedies is risky. In most cases, it really is best to stick with prescription drugs.

Nar2Reviews wrote on January 21, 2015, 12:46 PM

Well the reason Ruby3881 that I put "quite a few" was because I didn't want to offend. Your post lists quite a lot in terms of epilepsy, and then schizencephaly, and from that how it affects other viruses such as flu. Perhaps the choice of words are wrong, but to me if one condition leads to another, it is quite a few. As for my uncle's prescription drugs - they don't work all that well, but then he is in India, where drugs are not as effective as the ones we get in the west, in my experience.

BodieMor wrote on January 22, 2015, 2:01 AM

I hope that the EPO works very well for you with controlling your seizures. And I also hope you are approaching menopause quickly!

AsADrivenLeaf wrote on January 24, 2015, 7:47 PM

I think it's a matter of research, experimenting, experience and bravery in taking responsiility about what's good or bad for our own health. I'm leaning towards no-drugs health and mental maintenance. Yes, my 178/128 BP in 2013 has been reversed through natural, no-sugar-no-carbs diet, exercise, and no-to-precribed BP calcium blockers. I'm thankful for that first step f faith. emoticon :smile:

AsADrivenLeaf wrote on January 24, 2015, 9:25 PM

I think it's a matter of research, study, experimenting, experience and bravery to choose a No-drug mental and health maintenance. Yes, my high BP of 178/128 in 2013 has been reversed with desperate prayer, diet of no-sugar-no-highcarbs, no-vegetable oils, no-transfatty acids, exercise, herbals, traitional home-cooked meals. I'm doing well.

valmnz wrote on January 28, 2015, 6:58 PM

Good luck with this. I didn't realise EPO could be dangerous.

Ruby3881 wrote on January 29, 2015, 5:27 PM

Kudos to you! That's a pretty high blood pressure to reverse, by whatever means.

While a lot of health concerns really do fall under the rubric of lifestyle, it is harder to treat something like epilepsy with diet and exercise. A healthy lifestyle can help eliminate some triggers, but i'm really very lucky that I can address my seizures with supplements. It's not always possible, and I get really frustrated with people who frown on all prescription drugs because of that. When I was younger and needed them, the anti-convulsants I too probably saved my life.

Ruby3881 wrote on January 29, 2015, 5:31 PM

Anything can be dangerous - even oxygen or water! It's all a matter of how it's used.