How many weeks to "home free"?

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klewlis

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The longest I've gone without any partials since this started (September) was about a month. Since my first generalized seizures in June my meds have been regularly increasing, and I am currently 3.5 weeks without any partials. I think the med increase is helping but in my mind I feel like I won't know until 6ish weeks. How long do I wait before I feel confident that I'm good to go?

For driving, it's 3-6 months (up to the neuro). For me personally....? I'm not sure. How long do you wait before you know the meds are helping? People keep asking me if it's working and I keep saying it's too soon to say. What is your experience?




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One of most frustrating things about epilepsy is that it's so darn unpredictable. My experience with meds is likely to be very different than yours, and even for one person the course of their seizures or medication-response might change over time. So when to start driving again is really a decision you have to make on your own, keeping in mind any legal restrictions. I would recommend that you:

1. Follow your neuro's recommendation.

2. Err on the side of caution -- the longer you wait, the better your sense of how your brain is behaving at the current dose of your current med. Some folks develop a tolerance, so seizure control can diminish even while the dose is kept constant.

If you decide to drive, make sure you are comfortable with any potential consequences. Are you willing to take responsibility for any injuries for yourself or others that might occur should you have a seizure while driving?

I know it's tough not being able to drive, so I understand your wanting to get behind the wheel now that you feel stable. I think after my first seizures I started driving before the official "restart date", so I'm not judging you in any way.
 
My question wasn't really about driving, but how long it takes you after a med increase/change to trust that it's working.

I'm not driving until my neuro clears me to... As much as it sucks and impacts my life and business. :(


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For me, I've never been "home free". But I'm in that small percentage of folks who have refractory E. I've tried many meds, had a temporal lobectomy and now have the VNS, but I still have some seizures. Plus I had several car accidents due to seizures and have lost my driving privileges. Thank god, no one was killed or injured. So it is different for everyone, depending on the type of seizures you experience and the meds + other medical conditions. And the laws of your land. Here in the U.S., it differs from state to state.
 
My question wasn't really about driving, but how long it takes you after a med increase/change to trust that it's working.
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Ah, gotcha! Still tough to say. I think three months may be a good marker, but it can vary from person to person.
 
No More Seizures?

klewlis,
Like Nakamova said, a person w/E has to be ready to deal with a breakthrough seizure at any time. Many times people who have been seizure-free for many years suddenly have one or more breakthrough seizures. A person can feel confident about their situation, but at the same time they have to be ready to accept the fact that a breakthrough seizure can happen and they will have to start over again as far as the time period of being seizure-free.
I feel that this is what makes a person w/E stronger than many 'normal' people. We have to have plans in place and be ready if this happens. Most of the time the 'normal' people won't be able to deal with a problem like we do! This ability to deal with problems and difficulties is something that we can use to build self-confidence in ourselves and be proud of! :clap:

ACsHuman
 
I would say it will only take a week or two to notice any effects from the medication. Of course, long term the story could be different. The medication might appear to work, for a few days, and then it could stop working. I'm not sure about the driving requirements in your state, but if you can make it that far, you are probably in the clear.

I agree with other comments that you should wait it out for a few weeks, perhaps months. Driving is very convenient but you don't want to risk causing an accident if you have a breakthrough. One can never predict if this will happen. Make sure you have good insurance so you can cover any damages or hospital visits, not just for yourself, but others on the road.
 
A Person Has To Feel Comfortable For Either One!

klewlis,
You say that you are only asking about when you should feel comfortable with how your meds are working. The fact is that a person has to have the same feelings to feel comfortable as they need to think they can start driving again. In many ways you can't separate the two. If you want to feel comfortable with how your meds are working you will see that you will need those same feelings toward how your meds are working when you are trying to determine if you should resume driving!
You can say that these feelings are separate, but the fact is to drive you have to feel comfortable enough with your meds and how they are working for you to get the confidence in yourself to resume driving.
This is just a fact and is not going to change anytime soon. The only time that this wouldn't be the case is when a person is more concerned about resuming their driving privileges than about how their meds are controlling their E! I have seen people who do this, but they are only concerned about one thing and that is NOT feeling comfortable about how their meds are working for them! :twocents:

ACsHuman
 
I totally don't get what you're trying to say in that last post, but clearly others aren't understanding what I'm getting at either so maybe I'm just tired.

When someone asks me "so are your new meds working?" I don't know how to answer them because I don't know yet. I thought they were in June and then my seizures progressed from partial to generalized, so clearly not. I went the entire month of March without any partials, and then they came back and then progressed. So now it's like, sure I feel good now and I haven't had any partials since June 24, but that doesn't mean my meds/dose are working. It just means I haven't had any partials since June 24. Maybe next week they come back just as strong as before.

So I don't know how long to give it before I can say to myself, or to others, or to my neuro, "yes this is working". In my mind I think six weeks because that would be the longest I've been episode-free since this started. But even then I'm not sure. :/


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Tough one. I was five weeks between the last two. I do know that is no where near enough time for me. I had increased. Meds and moved over to depakote/lamictal mix prior. We're thought it was doing great. Then... At airport. Bang !!. Scared my 14 year old son. That was 1 week ago. So. I take no chances now. I stopped driving and that does suck... But so does vehicular homicide on your rerecord. Just sayin'
 
Sorry to misunderstand your statement, klewlis. I would recommend keeping a journal of your seizures. I have found this proves invaluable and my doctor complemented me for it. The best method you can employ is to monitor your seizures and keep a diary. After a few months, you will not be able to quantitatively prove to yourself that you've had no seizures. If you don't feel comfortable after a few months, give it as long as you think you need to gain confidence in your meds. I would also recommend that you have another EEG done to prove that your medications are working as they should. It is possible to have an abnormal EEG even though you think you might be stable on your meds.
 
The number of answers to your question is unlimited!

klewlis,
I am not sure how long it has been since you were diagnosed, but the way that medications work is going to be different in every person so it is impossible to give you a set length of time. Every person who has E has different metabolism rate in their body. Each person is going to have different substances that their body is going to react to and each reaction is going to be different. This is why no one can predict whether a med is going to work for someone or for how long the med may work if it does work. This is why the treatment of E is so difficult, both for the doctor and the patient. The doctors have nothing that they can base their treatment on except to try a med and see if it works. It may take several different meds before the doctor finds one that will work for someone. This means that a person w/E isn't going to able to get a definite answer to a question like yours! This means that in many ways the treatment of E is like a trial and error project with each med that is being used being what is being tested and the person w/E being the person it is being tested on. :twocents:

ACsHuman
 
resaebiunne said:
I would recommend keeping a journal of your seizures. I have found this proves invaluable and my doctor complemented me for it. The best method you can employ is to monitor your seizures and keep a diary.
Click to expand...

I have been using the seizure tracker app since October 3 (first episode was Sept 23 but I didn't know what it was at first so I didn't track that first week). The app is helpful since I can add triggers, etc, but it doesn't have an intensity scale. I wish I could rate them by intensity too (I've just been doing that in the descriptions).

I would also recommend that you have another EEG done to prove that your medications are working as they should.
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My first EEG came out clear (as did all my other tests) so I doubt he will recommend another one.




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"How long do I wait before I feel confident that I'm good to go?"

I am afraid that only you can answer this question. Some people are "good to go" while still having many seizures because no medications provide relief, others are only "good to go" after a year or more seizure free.

Everyone experiences epilepsy differently and deals with it differently, there are far too many individual variables for any consistent outcomes.

"How long do you wait before you know the meds are helping?"

If I were seizing once a month I would feel confident in stating the meds were helping if I could go 90 days without a seizure.
 
I think part of my problem is that mine are so inconsistent... There's no pattern. I can have 5 partials in one day or none for weeks. :/ they do tend to cluster over several days though. Those clusters seem to be lessening and getting farther apart, so I'm taking that as a good sign.


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klewlis said:
When someone asks me "so are your new meds working?" I don't know how to answer them because I don't know yet. I thought they were in June and then my seizures progressed from partial to generalized, so clearly not. I went the entire month of March without any partials, and then they came back and then progressed. So now it's like, sure I feel good now and I haven't had any partials since June 24, but that doesn't mean my meds/dose are working. It just means I haven't had any partials since June 24. Maybe next week they come back just as strong as before.
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It shouldn't really be up to you to determine if they are working. Tell the neurologist this description you just gave here, and then say: "You tell me - are they working, or do we need to make adjustments?"
 
We've made lots of adjustments over the past 6 months--first a med change and now dosage increases because we *think* it's helping but it's so hard to tell yet. I hate the trial and error.


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klewlis said:
When someone asks me "so are your new meds working?" I don't know how to answer them because I don't know yet......
So I don't know how long to give it before I can say to myself, or to others, or to my neuro, "yes this is working". In my mind I think six weeks because that would be the longest I've been episode-free since this started. But even then I'm not sure. :/
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The truth is, the doctors don't really know either if the meds are gonna work or not. Each patient is different, each medication is different, each seizure is different. What med works for one, may not work for someone else. Believe me. Been there, done that! I've felt like a lab rat many times.
I've gone six weeks seizure-free and then week 7, BOOM! Another TC! On other meds, I've gone just over a year seizure-free and then another TC. Having E is kind of a "wait and see" guessing game.
 
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