A little positivity

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
3
Reaction score
0
Points
0
I have been controlling my own generalised and focal epilepsy with amino acids, vitamin D and positive thinking for a little over a year now. Originally I started using an amino acid and antioxidant rich plant to relieve the side effects I was experiencing from the AED's I was taking. When I discovered I could turn off my seizures relatively easily by flipping the panic I used to experience for feigned excitement I decided to take a calculated risk.

For thirty five years I had been having about six focal seizures every two to three weeks despite taking over two grams of various AED's a one point. The more AED's I took the worse the seizures were. At the time I decided to wean myself off my medication I was under the false impression that it wasn't helping me at all. I had been taking moringa (It's simply a plant that grows like a weed in India) alongside my meds for nearly a year by then, however I wasn't necessarily taking it every day.

When I finally finished weaning myself off epilepsy medication on November 15th 2016 I started having constant myoclonic jerks when I was relaxing. My complex focal seizures I was mostly able to turn off. I stopped getting auras before my seizures after forgetting to take my moringa for a few days. I was unable to stop seizures without an aura to warn me. Things started to get very scary at this point. One day I collapsed and had a tonic clonic seizure with no warning whatsoever. As is typical of any seizure I have now, I recovered from it relatively quickly. I decided that maybe I should start taking epilepsy medication again. I took 400mg of tegretol plus 100mg of Lamictal and quickly regretted it.

Epilepsy medication works by cutting down the brains electrical activity. In hindsight this was the last thing I should have done AFTER having a seizure. My brain needed all the electrical activity it could draw on to recover from the seizure I had just had. It took me a week to recover from the side effects. The lesson I learnt was that the amino acids in moringa were doing a much better job of controlling my seizures than epilepsy drugs ever were.

At this point anyone reading this might be forgiven for thinking moringa is some product that I'm trying to sell them. However I am an entertainer by trade and moringa is a simply a plant. You can buy moringa powder, tea and capsules on Amazon but I am just someone who buys it. It contains twenty amino acids, 19 anti oxidants vitamins and minerals, is helping me overcome my epilepsy and I am simply sharing my experiences with you. At this point on November 30th 2017 I doubt that the people who sell moringa have the remotest idea how good it is at treating brain damage.

Getting back to my story...

Now I use moringa in the same fashion I used epilepsy drugs with the approval of my doctor. Throughout the last year my fiancee has been keeping a record of how many seizures I have been having and how long they have been lasting. I must stress that before I switched my medication to moringa (officially moringa isn't a medication, it's a plant) I had had over three thousand seizures over thirty five years. Since November 15th 2016 I have had about ten that I haven't been able to stop and I have recovered from them all in a matter of minutes rather than days.

Recently I changed my doctor as I have moved and am eager to share my experiences with many. My introductory appointment couldn't have been more perfect. My fiancee had recommended him to me and warned him of my impending arrival, I took my fiancee with me.

"I've heard a lot about you." The doctor said.

I began telling him about my progress from where my fiancee had left off. While I was talking I noticed an aura but ignored it. Since I started stopping my auras before they turn into full blown seizures they often run out of their own accord, I hoped this would be one of those moments. It was going to be one of those other moments.

On the way home my fiancee was telling me how well it went, I wasn't quite sure what she was talking about. I thought I'd missed a great opportunity and not told him a great deal, it's a good job I took her with me.

When we got home she smiled and said, "Don't you remember having a seizure in the doctors surgery?"

Suddenly it came back to me, the missed aura and the barely functioning memory throughout the appointment. I couldn't think of any more perfect way the visit could have gone. My gut instinct was to burst out laughing, I laughed harder than I've ever laughed before. It was a wonderful feeling and afterwards it got me thinking.

That was the first and only time I have ever had just one seizure in a day.

If it's possible to stop a seizure before it really gets started by changing my perception of them, perhaps I've just taken this a step further. Perhaps this is the start of a new chapter, already I've put everything in place right down to a brand new doctor. I will keep in touch with the old one though, this is too important not to share with him.

Moringa and vitamin D stops my myoclonic and tonic clonic seizures, and it has changed the intensity of the complex focal seizures. There is still a long way to go but I am enjoying every moment of the challenge.

A year and two weeks ago I had no idea how much I was going to achieve in the next twelve months, now I have no idea how much we're all going to achieve in 2018.
 
Hi Ant Arnold, welcome to CWE!

It's great that you have found ways to be proactive about your seizure control and that you are finding success doing so. :)

I just want to caution that individual experiences vary quite a deal with epilepsy, so what works anecdotally for one person may not work for others. If anyone wants to wean off a medicine or try a supplement or other treatment approach, it's a good idea to keep your neuro in the loop.

That said, I have a few tiny quibbles:
Epilepsy medication works by cutting down the brains electrical activity. In hindsight this was the last thing I should have done AFTER having a seizure. My brain needed all the electrical activity it could draw on to recover from the seizure I had just had.
This is a bit of an oversimplification. The meds primarily work by preventing neurons from abnormal, excessive firing, not from normal healthy activity. (Sort of the way a website allows normal traffic, but tries to guard against the massive flood attacks that can shut it down).

officially moringa isn't a medication, it's a plant
Both seizure meds and plants are/or contain substances that can affect the brain. In pharmaceuticals those substances are regulated in terms of dosage and consistency; plants are not. I am not knocking moringa or discounting its benefits for you and potential benefits for others (and I am no fan of Big Pharma), I just want to emphasize that plants are not inherently more or less safe than meds. Also worth noting: Among the many amino acids Moringa contains are glutamic acid and aspartic acid, both of which can trigger seizures for some folks. This may or may not be problematic, since it also contains other amino acids that could potentially balance out any stimulant effects and promote inhibitory ones.

Moringa has been shown to have anti-convulsant properties in mice (see http://www.irjponline.com/admin/php/uploads/vol-2_issue-7/30.pdf), but has not been tested extensively in humans. I hope that more research on it is in the works, because it certainly looks very promising, with all sorts of potential health benefits, not just for epilepsy.

I want to reiterate that I think your experience is great news and I am glad you are sharing it with us! A little positivity can go along way. :)

Cheers!
Nak
 
Agreed, it hasn't been tested extensively on humans until now. I have tested it on myself for the last year and am doing great. I am not advising anyone else to do this, just letting you all know how great it is working for me. It's great to see you have found so many positives yourself. It wasn't moringa that was tested on mice it was one amino acid. I tested moringa myself because I was faced with a choice of going back on meds or not. I very nearly did but spotted all the hidden side effects I had grown to believe were either effects of my head injury or simply my own character.

My doctor is very interested indeed. Doing this has been really successful but it makes me wonder why it has never been done before. Amino acids, unlike epilepsy drugs encourage the brain to repair itself so this potentially could help anyone and treat much more than just epilepsy. Big Pharma aren't going to be too happy though.

Amino acids are refuted to be the element in the cosmic soup that got life going on this planet in the first place. They have been around for an awfully long time, Moringa has been around for a long time too. One wonders why this was never discovered before but perhaps it was covered up. I spent 35 years on epilepsy drugs wondering why I was so confused, now I'm thinking clearly again I'm not going to lie back down.

I hope that answers a few of your questions.
 
On the subject of oversimplification, I don't believe it was at all. I have experienced a huge change in my mental awareness since coming off epilepsy drugs.. I believe your comparison though to a web site was very accurate. "Tries to guard against the massive flood attacks" is spot on, website security is not one hundred percent efficient. Given the size of the human brain compared to that of a website even a small error margin could have tragic consequences such as suicidal thoughts. This is a known side effect of epilepsy drugs.

I just caught up on your link to the testing of moringa on mice. Interesting that it was done in 2011 and yet it still hasn't been tested on humans (if you rule me out). As I am not a mouse I am able to take advantage of other mental health techniques that are also playing an important role in my recovery. I am confident that they are speeding things up. Moringa is giving my brain the vital "step up" it needs for me to achieve my goal of one day being seizure free and helping others to do the same.

Perhaps I wasn't clear enough in saying that "officially moringa isn't a medication. The medical profession won't class something as a medicine until it has been approved. More research on controlling epilepsy and other conditions like this really is in the works, but it's people like me who are doing it.

I will keep you updated.

Thanks,

Ant
 
Last edited:
Back
Top Bottom