How many weeks to "home free"?

[acshuman]

Can A Person w/E Ever Feel 'HOME FREE'?

klewlis,
With the possibilities of a person w/E having a breakthrough seizure can a person w/E ever be certain that that they are 'home free'? The best thing that a person w/E can do is accept that they have E as a fact! This allows that person the ability to deal with seizures that may occur at bad or unexpected times. They need to learn to deal with the fact that they may have a breakthrough seizure at any time and live their life accordingly.
If you are going to feel that you are 'home free' you may be un for some big disappointments because there is NO 'cure' for E, just treatments. If a doctor were to tell their patient that they were 'home free' from having a seizure that doctor would be delusional, because there has never been a treatment for E that is guaranteed to work!
I have a friend whose son had E until he was 16 years old. Then he seemed to grow out of the E. This has happened many times to people of that age. It seems as the brain matures it may heal the problem that was causing the E for the person before their brained matured and healed itself. :twocents:

ACsHUman

 

[klewlis]

I refuse to accept this. I understand that that's how it has been for some people, but not everyone. I have one friend completely seizure free for 10 years and counting. And mine is mild enough that I should be able to manage it with a combo of meds and lifestyle. Sure there's no cure (yet) but that doesn't mean it can't be treated and managed effectively over the long term.

If what I'm trying now doesn't work, I will try alternatives. Neuroscience is advancing rapidly and we are constantly discovering more about neuroplasticity and our brains' amazing abilities to heal themselves, given the right help.

I'm already supplementing my Keppra with CBD oil, as well as making sure to get enough sleep, reduce stress, reduce caffeine and alcohol, etc. If I have to change my diet, try neurofeedback, etc etc, I will.

It's just too new for me to have figured out what is going to work for me. I hate the trial and error but I will keep doing it until I find what works over the long term. I won't just throw up my hands and say, "well, I just have to live with the seizures now."


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[Nakamova]

Maybe we all define "home-free" differently? I think perhaps I fit the category of home-free because I've been seizure-free on meds for approx. 7 years. Even though I'm not "cured", and my EEGs still show abnormal brainwaves, I'm fortunate enough to live a life where epilepsy can recede into the background most of the time.

klewlis, perhaps this is what you are aiming for?

As to when I first felt home-free, it's tough to pinpoint the exact moment. I only get t-c's, and they've been pretty responsive to meds from the get-go, so I'd say I've had the "free" sensation on-and-off throughout my time with epilepsy (about 17 years).

 

[Kgartner]

I don't know if we'll ever feel "home free" again. After Annika was first diagnosed, she had 9 months with no seizures. Then they came back, and since then the longest she has gone with zero seizures has been 7-8 weeks. It's been more than 18 months since she has had a tonic-clonic seizure, and now she is only having auras/simple partials - she fits into the category of intractable epilepsy, but has at least gotten partial control. However, as long as she continues to have any seizure activity I feel very concerned that the "big" seizures could come back.

She has had to learn to live with it - both with the seizures and with the fear.

 

[klewlis]

But she doesn't have to ever stop searching for alternatives and helps. I think the problem is when people stop searching. Because it's new to me I'm constantly searching for other things I can try if this doesn't work. I recently read "the brain's way of healing" by Norman Doidge. It doesn't have much on epilepsy but some incredible breakthroughs in things like Parkinson's, Alzheimer's, traumatic brain injury, chronic pain, etc. The book reminded me that we are our own best advocates. If we don't keep up to date on the newest research and treatments, we may miss out on things that could have an amazing impact. And it's always changing and evolving.

Right now I'm four weeks free... And feeling good. Still too soon to know if it will last but with each passing week I'm hopeful.


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[Kgartner]

But she doesn't have to ever stop searching for alternatives and helps. I think the problem is when people stop searching. Because it's new to me I'm constantly searching for other things I can try if this doesn't work. I recently read "the brain's way of healing" by Norman Doidge. It doesn't have much on epilepsy but some incredible breakthroughs in things like Parkinson's, Alzheimer's, traumatic brain injury, chronic pain, etc. The book reminded me that we are our own best advocates. If we don't keep up to date on the newest research and treatments, we may miss out on things that could have an amazing impact. And it's always changing and evolving.
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We definitely haven't stopped searching!! She is in the midst of a medication switch right now, and also has been evaluated for brain surgery - she has focal epilepsy and may be a good surgery candidate. And I agree that we are on the cusp of many different breakthroughs in our understanding and treatment of the brain - I am particularly excited by some of the new imaging and surgical techniques, as well as brain stimulation. She goes to a cutting-edge hospital for her care, and they continue to search for ways to that she could move from partial control to something more stable. She is young (18 ) and I have a lot of hope.

But acceptance is also important - and the question about feeling "home free" becomes more complex once you have had your hopes dashed a few times. It was very important to Annika to begin to accept that epilepsy was something that she was going to need to embrace for the long haul - probably for the rest of her life. Acceptance does NOT mean giving up!

But "home free"? - as least for me as a mom I don't know if I will ever feel that way. But we have learned to enjoy the good times when we have them - and that's really the most important thing! I hope you continue to feel great and be seizure free!

 

[Cint]

I refuse to accept this. I understand that that's how it has been for some people, but not everyone. I have one friend completely seizure free for 10 years and counting. And mine is mild enough that I should be able to manage it with a combo of meds and lifestyle. Sure there's no cure (yet) but that doesn't mean it can't be treated and managed effectively over the long term.

onder: OK, don't accept reality. Years ago when I was in my 20's and first diagnosed with E, I was young and naive, just like you, thinking how could my seizures get any worse than they already are? But as time went on, they slowly increased. I didn't know at the time that seizures beget more seizures. And I did not know at that time that seizures can kill!! Since then, I've met a mother who lost her daughter to SUDEP. She had only been diagnosed three years prior to her death and was only 17 years old. And I have a cousin who has had E since childhood. She has been seizure-free now for years. My E started when I was 22 years of age and nothing has stopped mine. And I've tried nearly every med out there and am open to any book that has been written on the subject.!
As I said previously, everyone is different and what works for one doesn't necessarily work for everyone. Read these statistics:

http://www.epilepsy.com/learn/epilepsy-101/will-i-always-have-seizures

About 6 out of 10 people diagnosed with epilepsy can become seizure free within a few years with proper treatment. Many of these people will never have any more seizures. For the rest of the people, some will have occasional breakthrough seizures or side effects of medicines and others will have uncontrolled seizures.

Let’s consider an easier way to think about this.

The outlook in the first year for people newly diagnosed with seizures:
About 50 to 60% (5 to 6 out of every 10 people) will be seizure free after using the first seizure medication tried.

A second seizure medication may help 11 to 20 out of every 100 people become seizure free. Adding more drugs usually doesn’t help the chance of seizure control.
25 out of every 100 adults will develop uncontrolled epilepsy.

Others will have continued seizures and side effects, but we don’t know if other treatments may help.

The outlook for people with seizures and epilepsy at any point in time:

About 60 to 70 out of 100 people may get control of seizures after a number of years, but we don’t know if this means complete control of both seizures and side effects.
At least 30 out of 100 people with epilepsy at any point in time have uncontrolled seizures.

 

[resaebiunne]

My first EEG came out clear (as did all my other tests) so I doubt he will recommend another one.

What type of EEG was it? The first few times I had an EEG, it was only done for an hour or so. My most recent EEG lasted for 5 days of continuous recording. It is possible to have an EEG come back normal if it is not done over a long enough time period.

 

[klewlis]

What type of EEG was it? The first few times I had an EEG, it was only done for an hour or so. My most recent EEG lasted for 5 days of continuous recording. It is possible to have an EEG come back normal if it is not done over a long enough time period.

It was just the short one. I asked if I should have a longer one and he said at this point no (that could change in the future).


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[acshuman]

Only Going To Cause MORE Problems For YOURSELF!!!

klewlis,
If you want to refuse to accept what may be the facts in your case, you are only setting yourself up for more problems! Your denial of the facts is going to cause you some big-time stress. The stress in turn may trigger more seizures for you.
A person can definitely continue to do research about how their E can be treated. I learn new things about the treatment of E every day.
Your refusal is showing the other members of CWE that you aren't ready to deal with your E! You would rather deny that it can happen to you than accept it and get a treatment for it. If you continue to do this, you are going to see a lot of people turn away from you. This would be happening because you have been trying to find any excuse you can to NOT accept what the helpful members of CWE tell you. A person who lives with this type of denial about some part of their life is going to have a hard time fitting in with other people.
You have shown this by questioning the response of every person who answered you question. You claimed that the other people weren't understanding your question! We understood it, but you were denying what we were saying was true by saying we didn't understand your question.
I am not trying to be negative to you, but show you that denying the facts about E isn't going to help you. Denial can only hurt you or prevent you from getting help for a condition that definitely needs help!
The members of CWE only want to help NOT hurt! :twocents:

ACsHuman

 

[Cint]

:agree: Denial is a wonderful thing, isn't it? Free, free at last..... free of the facts.onder:

 

[klewlis]

I'm not in denial about anything. I am following my doctor's orders, I am taking my meds, and I am doing what I need to do.

What I refuse to accept is the defeatist attitude of, "oh, this is your life now, you're never going to be seizure-free", which is what some people in this thread seem to be stuck on (not everyone).

Your refusal is showing the other members of CWE that you aren't ready to deal with your E! You would rather deny that it can happen to you than accept it and get a treatment for it.

Um, no. I AM getting treatment for it. I don't know where you thought you read that I'm not.

A person who lives with this type of denial about some part of their life is going to have a hard time fitting in with other people.

Actually you know nothing about my life, and "fitting in" is not a problem for me. Please don't project your own negativity on me.

You have shown this by questioning the response of every person who answered you question.

Nope, mostly just yours. In one breath you say, "everyone is different and responds differently" and in the next you expect everyone's experiences and thoughts to be the same as yours.

 

[CQ:)]

Hi Klewlis

Yes we are all different when it comes to seizure control but sadly the reality is epilepsy is so unpredictable you never know when it will rear it's ugly head.
There is currently no cure for epilepsy, some people have to take medication for the rest of their lives & others have been able to control their seizures other ways eg surgerys/ VNS, diets, medical marijuana.
Some people may be lucky enough to have great seizure control but other members like Cint may never have seizure control.

I havent had a chance to read all the posts but Im thinking you are still fairly new to epilepsy. As hard as it is the easiest way to deal with your epilepsy is accept your diagnosis & not dwell on whether you will ever be seizure free.

 

[CQ:)]

I've had epilepsy most of my life & have had long periods of being seizure free. I had my 1st seizure at 9 months & took tonic clonics until I was 3 & taken off meds when I was 7.

I was 21 years seizure free but I started having seizures again in May 2002 when I was 24, when my seizures returned I mainly took simple/complex partials with the odd tonic clonic. My neurologist tried me on a variety of meds, none of which controlled the partials so I had brain surgery in March 2011.
After my surgery I went 2 years seizure free but started funny feelings again in 2013. I worked with my neuro to control the funny feelings & to try to pinpoint what type of seizure they were. I had a VEEG last year, the drs got enough footage to confirm that I am having focal seizures.

No one likes having epilepsy but I always consider myself extremely lucky that I am still very independant & able to do so much. There are so many people who have medical conditions / health issues which are far worse & have to rely on others just to do basic things.

 

[Kgartner]

I'm not in denial about anything. I am following my doctor's orders, I am taking my meds, and I am doing what I need to do.

What I refuse to accept is the defeatist attitude of, "oh, this is your life now, you're never going to be seizure-free", which is what some people in this thread seem to be stuck on (not everyone).

I am really glad that you are following your doctor's orders and not in denial about what you need to do. And I truly hope that your current medications work, and that you continue to be seizure free.

But I think it is wrong to think that acceptance = defeatist. In a way, that implies that people who are not seizure-free and have had to learn to live with that reality have been "defeated" by epilepsy and seizures. People living with epilepsy and seizures are not "defeated" - they are some of the most courageous and amazing people I know! They accomplish incredible things, even though they need to live with the reality that their life might be interrupted by a seizure at any time. My daughter is earning straight A's and taking 17 hours of ballet a week - and living with seizures. She is relatively early in her journey with this condition (about 3 years) and has many different treatment options available to her, so it still makes sense for her to try new things. For some people who have lived with epilepsy for much longer, it actually doesn't make sense to continue to pursue new treatment options. That does not mean they have been "defeated" - they are simply doing what is best for them.

No one knows what your path will be. But I recommend that you be open to many different twists and turns in your epilepsy journey.

 

[resaebiunne]

I don't think the OP is in denial, like some have suggested. The question remains: Even with medication, how long can one go between seizures.

Personally, I don't think there is a definitive answer. Only the OP can make that decision. When you regain your confidence in your treatment is when you are ready to face the world. One doesn't have to admit anything to anyone. Nobody is owed an explanation. Just take it one day at a time and work with your doctor for the answers and treatment you need.

 

[Nakamova]

I may be biased, but I would say that no CWE members are truly defeatist.

Apologies to klewlis, I think I skewed the direction of the thread by misreading the initial post and responding about driving. I do think the sense what it means to be free of seizures or free of worrying about seizures can change over time. It certainly has for me.