Wondering if anyone is considering going natural?

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MonkeyBoy

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Hanging out tonight and reading some of the many threads where so many people are dealing with medicines and their effects or many newbies are here and just starting their journeys. I was wondering if anyone that read the threads last week about natural methods has given anymore consideration to going natural or at least doing further research? Cheers.......
 
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When there is more convincing data/research from folks who've dealt with E as long as I have.
 
I agree with Cint. When there is more evidence, then maybe. So far what i've researched is tenuous at best.
 
I just do not understand why would most people go straight to medications without first trying to find the triggers (Excitoxins as a prime example or flashing lights or some other known culprit?) if it is not from a injury or tumor? If in the end you have to go to some or even smaller doses of medications then you know that it is because the natural remedies did not work completely for you but the modern medical profession will never NOT recommend medications. I know this may bring many negative comments but we are all entitled to our opinions here if we remain respectful. I would challenge you to do the research and even read RobinN or Bernard's stories for up close and personal experiences as mine is not as long as theirs. I will update you all to say that my relative is doing fantastic and normal after several months of Grand Mal seizures as we worked through the possible causes and the natural remedies. You can read the background on him in my other posts if you care as well as his natural methods that are working for him. He has not taken any prescription medications thus far and he identified his triggers which were Excitoxins and a better sleep schedule that came out of the blue. ZERO symptoms and a normal life so far. Best wishes to you all.....
 
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without first trying to find the triggers.

I would challenge you to do the research and even read RobinN or Bernard's stories for up close and personal experiences as mine is not as long as theirs.

Been there, done that.

I've had E for well over 30 years now. Initially, when I first started having only CP seizures, the dr. just said I was hypoglycemic and that was it. They increased and several months later, I experienced my 1st TC seizure on the way out of the shower, suffering 2nd and 3rd degree burns on my back, arm, and breast. After that experience, it was enough to convince me that I needed something to control seizures and not to trust just any dr. or any person, especially on the internet.

And from what research I have done, TLE is one of the hardest types of E to control. When a person has more than one type of seizure, which I do, it is much more difficult to control them.
 
Ideally, in my opinion, they'd both compliment each other.

Neither meds, nor natural remedies, work 100% of the time in every case. The best option would be to find out which of each work for each individual, if any, and combine them so they compliment each other.

Diet to counteract medicine side effects, to improve metabolism for the body, and for the individual cells function so they work as effeciently as possible. Supplements to counteract any deficits that the diet has... that kind of thing.

They should both be utilized if they can for maximum benefit. I don't think either should be ignored or made a higher priority than the other, nor should either be considered a true "cure" for E. They each have their places. Their places are important, but I don't think medication or natural approaches should be prioritized over one another.

Just my :twocents:
 
Here are my thoughts;

Just because you go on medication, it doesn’t mean you're on it for the rest of your life. We all know, when first diagnosed, the doctor prescribes medication hoping you'll gain gain seizure control. Their intent is after a couple of years free of seizures, they will wean you off the meds and hopefully your seizure threshold has risen enough that brain will have better control.

The biggest thing is seizure control, epilepsy is a progressive disorder. Medication is usually the fast route to obtaining that. If you can quickly identify a trigger, then go for it. But just because you decided to try medication first, doesn’t mean you can't explore alternative methods after. There are a lot of options out there and nothing is set in stone.
 
Wonder where the comments are from some of the new members or those lurking in the shadows. It would be nice to hear from those as well and what their thoughts and experiences are.......
 
I'll agree with the multiple approaches idea, and I think going on medicine FIRST is a good way to go until you know what the triggers are. When I had my first tonic-clonic, I was undiagnosed, and with my normal EEG, the neuro had me on medication for a couple of months then I was off of them because they guessed I didn't actually have a seizure disorder (they assumed it was an external cause).

I had my first real aura that I remember a couple of months later. Two years later, and after being off of medication for all that time, my partials were getting more and more frequent - especially starting in January time frame of this year. Instead of having one every couple of months, they were getting to the point where I would have several of them a few days a week. I cut out high caffeine content, ate healthy, always tried to get good sleep, etc. But I still had a second tonic-clonic in April of this year after several months of the partials getting more and more frequent. My new neurologist who I met yesterday seemed pretty upset that they took me off that medication so quick after my first seizure. And after what I've learned about kindling and what not, and seeing my own symptoms get progressively worse, I understand why.

But yeah, if you could find a definite trigger, I think being off of medication would be fabulous, but to me medication from the get go might just help prevent worsening symptoms. I think if they had kept me on medication for longer than a month or two after my FIRST TC, I probably wouldn't be having these problems now, as my seizures were pretty mild for quite some time, and now, even with one medication, I don't go a week without having auras and will probably need MORE medication to control the partials so it stops progressing.
 
I agree -- there's definitely a therapeutic benefit to getting your seizures under control as soon as possible. If they escalate, the brain gets more and more used to seizing, and it gets harder to "get the animals back in the barn". As great as it would be to control the seizures by identifying and avoiding specific triggers, we don't always have the ability to do so, either by the nature of our seizures, or by the nature of the diagnostic tests available to us.

Monkeyboy, how long did it take you to identify your triggers? How quickly did the seizures stop?
 
It took about 3 months to get them all narrowed down by removing things from diet and lifestyle. AFter that it was another 3 months or so to get the right supplements and changes in lifestyle to include diet made. No seizures for about 4 months now and he is feeling normal and acting normal. I think the key is a focused effort while being under control and not reacting as much as taking charge and being in charge. It is scary that first seizure no doubt which often leads to quick decisions and and over-reactions sometimes. What we have learned is to gain awareness and understanding quickly from reliable and trusted sources which is usually not the neurologist(s). Then when dealing with anyone regarding the seizures to be in charge and make sure they know you are in charge and not just accepting everything at face value and from a position of weakness. I would also say that although some medications may help "gain control" quickly the desire to come off them at any point in the future is difficult due to the memory of the seizure(s) and not wanting to experience them again no matter what. Just read the thousands of posts here and you can see that. I am not condemning but pointing out the reality. I also am not suggesting that all symptoms will be relieved by natural methods but it might be the logical starting point and/or inserted at an appropriate time. The longer one waits and on meds then the more difficult it may be to do this out of fear?
 
Just because you go on medication, it doesn’t mean you're on it for the rest of your life. We all know, when first diagnosed, the doctor prescribes medication hoping you'll gain gain seizure control. Their intent is after a couple of years free of seizures, they will wean you off the meds and hopefully your seizure threshold has risen enough that brain will have better control.

The biggest thing is seizure control, epilepsy is a progressive disorder. Medication is usually the fast route to obtaining that. If you can quickly identify a trigger, then go for it. But just because you decided to try medication first, doesn’t mean you can't explore alternative methods after. There are a lot of options out there and nothing is set in stone.

:agree: When I was first diagnosed, I was shocked, scared and finally accepted it, but thought I would overcome it and eventually go OFF medication, too. I don't think anyone wants to be on medication for life, do they?! But like you said, nothing is set in stone, not even our own wishes and desires in life.
S**T happens in life!!!!!
 
I have no fear of going off meds -- in fact, I've tried twice to do so without any luck. I've done so with my neurologist's very reluctant blessing. I expect sometime in the future I'll try again.
 
Monkey Boy, I'm glad you've been able to get your seizures under control without medication! Despite my experiences with seizure control, I am actually a firm believer in going as natural as possible to take care of issues when you can. I do agree it could be scary going off of medication... I was okay with it after my first seizure because it was my first one, and I honestly didn't think it would happen again, and I was still okay with it despite knowing my symptoms were getting worse, until this last tonic-clonic. Partials I can deal with, but now that I know they can lead to my losing consciousness, it does scare me to think of going off of medications. At this point it's all still pretty new though...

I do hope at some point once mine have gotten under control again that I'll be able to stop medication, or at least minimize the amount I'll need (I'm a little disturbed that they want to put me on another medication, but on the same token, I DO want this to stop eventually). I will most likely get out of the military when my time is up, which is in just under four years at this point, as the lifestyle seems to be counterproductive to maintaining seizure control, and I don't want to be controlled by medication my entire life either. I all ready know some of my triggers: sleep deprivation is a huge one, stress, and high caffeine... Avoiding those helps me, but unfortunately, it's impossible for me to avoid them completely, ESPECIALLY in the military.
 
It took about 3 months to get them all narrowed down by removing things from diet and lifestyle. AFter that it was another 3 months or so to get the right supplements and changes in lifestyle to include diet made. No seizures for about 4 months now and he is feeling normal and acting normal. I think the key is a focused effort while being under control and not reacting as much as taking charge and being in charge. It is scary that first seizure no doubt which often leads to quick decisions and and over-reactions sometimes. What we have learned is to gain awareness and understanding quickly from reliable and trusted sources which is usually not the neurologist(s). Then when dealing with anyone regarding the seizures to be in charge and make sure they know you are in charge and not just accepting everything at face value and from a position of weakness. I would also say that although some medications may help "gain control" quickly the desire to come off them at any point in the future is difficult due to the memory of the seizure(s) and not wanting to experience them again no matter what.

So, who is the reliable source if it isn't the neurologist? I think quite a few of us have gone 4 months without seizures. I've even gone 18 months without a seizure while still taking meds. So to say your natural method is working is somewhat premature.

I have taken charge, told my neuro what does work and what doesn't. They even got to the point of asking me it is OK with me if they prescribe such and such because only I know how I feel. Only the patient knows.
 
Sadly, you are stereo typing people. I venture to guess that many would be willing to go off their meds if their docs thought they had a chance of being seizure free. I know I am continually trying to lower my dosage as I identify new triggers and the like.

I don’t think anyone here is saying that alternative methods don’t work, or denying that they could be better alternatives than AED's. Personally I think the culture of our healthcare system is to medicate first, ask questions later. Christ, we are inundated by drug companies ads telling us what we need and why. With that said, you can’t treat all drugs the same, nor can you ignore the very serious consequences of uncontrolled epilepsy. Chemotherapy, while destructive in its own nature, can cure cancer.

You talk about taking control of your own decision and fate. It sounds to me that the decision have already been made about your family member. I just hope they are the one that made the decision and were given all the proper information to do so. I also hope they are telling you the truth, because a lot of seizures can’t be seen. Epilepsy is a tricky beast and effects everyone differently. I know you only want the best for your family member and are trying to express the benefits of considering alternative routes. I do hope things keep going well and wish them the best of luck!!!!
 
Hanging out tonight and reading some of the many threads where so many people are dealing with medicines and their effects or many newbies are here and just starting their journeys. I was wondering if anyone that read the threads last week about natural methods has given anymore consideration to going natural or at least doing further research? Cheers.......

I guess a couple of things come to mind. First thing I think about is the fact that you haven't experienced a seizure. Unless you walk in these shoes, its hard to understand why many would do anything to never experience seizures again. They are awful.

Second, its very nice of you to care so much and offer these suggestions, but... what is your motivation? A lot of people have no side effects from meds and have seizure control. So why upset the apple cart? Further, when I think of your relative taking such high doses of supplements, it seems reasonable that he may have adverse side effects from his remedies as well. So if you could provide some studies proving his methods are safe, it would be extremely helpful and much appreciated.

As I see it, there are good and bad sides to all remedies. Bottom line is seizure control and to each his own as long as there is informed decision making either way. I personally am trying the natural approach at the moment.

Monkey you may be well intentioned, but you come across a little harsh in your approach??? Not sure why? We are all here as support. Not to criticize. I support peoples right to choose. I DO NOT in any way shape or form support improper care by physicians. Im glad you bring this issue to light, but please be sweet to my friends here. :)
 
Sorry but it is who I am and what I see... not intended to be harsh as you put it and I do not think it is. I also believe that most people do not question the "why" enough as it is and is the reason that so many go down the path of conventional medicine and never get cured. I am glad you are happy with your current status and content with it but allow other the freedom to explore.
 
Until things get resolved, I'm going to close this thread, and let folks sort this out in private.
 
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