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HBOZ89

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Hello. My 40 year old son (unmarrried, lives at home) had been seizure free for 15 years on Neurontin and phenobarb. He lived an active life, driving, MA degree, thesis work in England...started his own small film production company. He's been an EMT for 11 years...loves helping people. However, he has always worked nights and during the last eight months or so he would often skip is midday dose of Neurontin because he was sleeping. I guess we had all become complacent after so many years of being seizure-free. Sure enough, his auras returned and then he had a breakthrough partial generalized seizure in early December. Life changed drastically for him. Regaining control looks like it will be difficult. He has been away from work for two months (leave time), not driving, more or less homebound. My heart breaks for him.

The doctor started him on Keppra about 6 weeks ago and he was just raised to 3000mg. per day. Auras may have decreased somewhat but he still has some simple partials that have become longer and scary for us all. We've gone from normal lives to someplace totally different. He will see his doctor in about a week and he will probably say the Keppra is not working. (We even bought the brand at a cost of $1100 for one month. Crazy.) He takes the Keppra 1000 - 750- 1250. Could this be part of the problem - would twice a day dosing be better?

My son has always been controlled on meds but he had to stop some due to side effects (dilantin - pericarditis; tegretol - low white count; lamictal - hives). We're frantic. My husband and I are both retired and in our sixties and afraid that one or both of us will have a breakdown and then who will be there for my son? He is cared for by a world reknowned neurologist, thank God, but visits for the past few years have been five minute checkups because things had been going so well.

I am amazed at the stories of courage I read. I am so down and depressed I am ashamed of myself. Any words of support or encouragement, of hope for our situation, would be greatly appreciated. It's just the three of us...no real support group. Thanks so much.
 
Your son is lucky to have such loving parents, he really is active, did he stop to rest at all. Working nights is and never was easy on anybody, if he told his neurologist about working nights maybe together they could have changed the times he took his medication but that is not a guarantee it would not happen, working that hard and all those hours it might have happened anyway which is unfortunate after so many years. To use your own words its easy to become complacent when you think everything is working out for you.

Getting control was not easy to start with so you know what to expect and look out for. If he thinks the medication is not working then its only right that he says so, nobody can say that taking it twice a day would be any better that is between his doctor and himself. So as you know all the decisions are between him and his doctor.

Nothing is going to happen to either of you or your son. There is nothing courages about any of our stories, we are just people like you going through a rough time, you are very courages I believe. There is no reason for you to feel down or depressed although I do understand why you are depressed. Think positive as you have always done and look for the good which you have brought to his life and the good you have done sharing your story.
 
Welcome,

Sorry to hear your son's seizures have returned.
However, he has always worked nights and during the last eight months or so he would often skip is midday dose of Neurontin because he was sleeping. I guess we had all become complacent after so many years of being seizure-free. Sure enough, his auras returned and then he had a breakthrough partial generalized seizure in early December. Life changed drastically for him. Regaining control looks like it will be difficult. He has been away from work for two months (leave time), not driving, more or less homebound. My heart breaks for him.

Just because one's seizures are well-controlled for long periods of time, doesn't mean they can skip their meds periodically and their seizures will not return. Messing with meds is a BAD idea. This is what can bring back seizures.

The doctor started him on Keppra about 6 weeks ago and he was just raised to 3000mg. per day. Auras may have decreased somewhat but he still has some simple partials that have become longer and scary for us all. We've gone from normal lives to someplace totally different. He will see his doctor in about a week and he will probably say the Keppra is not working. (We even bought the brand at a cost of $1100 for one month. Crazy.) He takes the Keppra 1000 - 750- 1250. Could this be part of the problem - would twice a day dosing be better?

A Simple Partial is an aura, so it sounds like he is probably experiencing CP seizures. And not all meds work for all folks. I take 3000 mgs of Keppra a day (name brand); 3 x's a day. I still have auras.

HBOZ89 said:
My son has always been controlled on meds but he had to stop some due to side effects (dilantin - pericarditis; tegretol - low white count; lamictal - hives). We're frantic.

There are side effects from ALL meds. Keppra can cause anger/rage, thus the name Kepprage. I've been on 12 meds. Had to be taken off several due to bad side effects or find something that worked. But there are meds with less side effects and not all folks suffer the same side effects.

HBOZ89 said:
My husband and I are both retired and in our sixties and afraid that one or both of us will have a breakdown and then who will be there for my son? He is cared for by a world reknowned neurologist, thank God, but visits for the past few years have been five minute checkups because things had been going so well.

Now it is time for this neurologist to become informed. Maybe more testing is needed? Make sure your son tells this dr. the truth about how/when he takes his meds. Otherwise, nothing is going to work. You need to stop coddling your grown son.

HBOZ89 said:
I am amazed at the stories of courage I read. I am so down and depressed I am ashamed of myself. Any words of support or encouragement, of hope for our situation, would be greatly appreciated. It's just the three of us...no real support group. Thanks so much.

Things do happen, but get your son into the neurologist and tell him/her everything that has gone on. Make sure you are all on the same page. Your son is the one who needs to take responsibility by taking his meds as prescribed. No need for you to be embarrassed.
 
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The neurologist is well aware of the situation. When my son had the breakthrough seizure six weeks ago he underwent video EEG monitoring for several days - none of his episodes showed up on the EEG.
 
The neurologist is well aware of the situation. When my son had the breakthrough seizure six weeks ago he underwent video EEG monitoring for several days - none of his episodes showed up on the EEG.

That often happens.
 
Sometimes I think that if he's going to be homebound and never return to his previous life, life is not really worth living for any of us. Too sad.
 
HBOZ89

Breakthrough seizures can be very common when you change medications or the amount you are on as you know and this is not your fault or your sons. As you know there is no guarantee the EEG will pick up anything, as you know and realise this just takes time and a lot of patience on our part. Life is always worth living as you know and if he becomes home bound then that is a new chapter in his and your life, one to shape and mould as best ye can so it can be enjoyed, it is not a prison sentence, just a new life.
 
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The neurologist is well aware of the situation. When my son had the breakthrough seizure six weeks ago he underwent video EEG monitoring for several days - none of his episodes showed up on the EEG.

If he has not had a recent MRI, it could be worth asking for one in the event something structural is present or has developed that has led to the reappearance of seizures. As Cint mentioned, there are a lot of different seizure medications out there, including many new ones in the past 15 years. As you know from his prior experience of getting on medications, there is trial and error to finding the right medication, the right dosage, and the right timing of taking the doses.

And don't you dare communicate to your son that you, who do not even have seizures, feel your life is not worth living!! Your son needs all the support he can get to get his life back on track, not a parent who is questioning whether your son's life is worth living.
 
Fedup is exactly right but just because he is going through a real rough stage doesn't it won't get beer and if he is homebound you can't let that define you. I'm so sorry you are going through this.
 
EMTs are great people doing very valuable work but the physical and mental stress of working nights for extended periods of time in such a high pressure job would be enough to give many people seizures even if they had never had them before much less someone who already has a lower than optimal seizure threshold.

Is there any way that your son could take all that he knows and still put it to good use while being able to work reasonable daytime hours? I'm thinking perhaps something like becoming a trainer for new EMTs.

Working nights throws your whole body out of whack, your sleep/wake cycles, metabolism, seratonin production, etc. This was probably much easier to handle when your son was younger but at 40, the body can start to protest being treated that way. That protest can come in the form of breakthrough seizures.

High pressure night shifts are fundamentally un-natural for the human body. Perhaps the answer is not necessarily more meds, but listening to the very real reasons why the body is unhappy with its circumstances.
 
Hi HBOZ89,

What was the rationale for switching from neurontin to keppra? If the neurontin was doing the job, and the seizures were a result of missing doses, then switching to a new medication -- particularly Keppra, which has a relatively brief half-life -- seems to be a hasty step.
 
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