No Medication??????

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Suzanne H

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Hi there,

Has anyone ever chosen to take NO medication and see what happens? Just curious because my husband has decided to do this.

Mike had a seizure last Feb. - his first - and he was put on a low dosage of medication while his tests were going on. So he went for 3 months with no seizures. Then the doctor decided to raise his pills to get him into the proper 'level' and 5 weeks later he had another seizure - she raised the meds - 5 weeks later he had a seizure - she raised the meds again - 5 weeks later he had a seizure. Not only that his blood platelets started dropping to a dangerous level. Soooooooo - every time the seizure meds were raised, he had another seizure. I wonder what would have happened if she had just left him on the low dosage where he went for 3 months with no seizures. Anyhow - the neurologist had to wean him off his meds to get his platelets to rise and sure enough - his platelets are back to normal.

So Mike has gone 5 weeks with no seizures and he met with his neurologist today. He asked if he could go with no meds and see if he has another seizure since his have all been nocturnal. She said to go ahead and try it.

Has anyone ever done that??? I'm kinda of scared for him but at least I'm with him in bed everynight so I can watch him.

Sue
 
I've tried a few times, under doctor supervision. I've tapered down slowly to minimize withdrawal side effects, and then gone med-free. I always end up having a seizure (tonic-clonic), and I'm back on meds currently.

I hope your husband does okay. It's can be a tough call between side effects and seizure control.
 
That's what my husband was trying to figure out because he had such huge side effects from the seizure drugs. I guess I'm scared about it all. Especially since the neurologist said 'Well, you could die' and went on to tell us about a man who died of a seizure when his wife got up to use the bathroom in the middle of the night but she said that is rare. Sheesh!!! I guess the neurologist okayed him trying it because his seizures are nocturnal. But I'm so afraid to get out of bed in case he has one. But I guess I have to respect his choice. Thanks for listening.
 
Shame on the neurologist for telling you that story about the man who died, and then saying it's rare. What a lousy bedside manner.
 
I agree. That's twice now she's told us that story. I guess the man slept on his stomach and when he had a seizure his nose was pressed into the pillow and stopped his breathing. The poor wife had just got up to go to the bathroom. As if I needed to hear that. And then she said that it was rare for that to happen. But it scared me. But I'm going to respect Mike's decision to go without meds - the worst that can happen is that he has another seizure and then he can go back on the meds. Thanks for listening.
 
Suzanne H

The neurologist should not have told you that, I would not think much of neurologist for that, things are hard enough.
 
What a terrible thing for that doctor to do! That, plus the continued increase of the same medication. If anything, she could have tried a different one. I have complex partials, most all of which are nocturnal. My husband sleeps through them for the most part! He used to fret and worry, but my doctor put him at ease. She told him that I don't need someone watching over me all the time. I could not imagine having heard that story and then the anxiety you would feel if you had to pee during the night! Just watch him while your awake, otherwise you can not possibly be expected to be at his side wide awake just waiting to see if he has a seizure. You both need your rest :)
 
I have had epilepsy and seizures for 6 years now and only been medicated for about 6 months of that time I was last in valorous acid which tasted like horrible 'oranges' and Ativan but then I was denied for state Medicaid and I'm out of work so I owe my prev doctor a tin of money he is suing me so until I get a job I'm forced back off mess - I'll say this though Ibusually only have one TC a year and I had 3 in 3 months when ON the meds - take it for what it' worth I have been seizure free 3 months since off meds
 
That's what my husband was trying to figure out because he had such huge side effects from the seizure drugs. I guess I'm scared about it all. Especially since the neurologist said 'Well, you could die' and went on to tell us about a man who died of a seizure when his wife got up to use the bathroom in the middle of the night but she said that is rare. Sheesh!!! I guess the neurologist okayed him trying it because his seizures are nocturnal. But I'm so afraid to get out of bed in case he has one.

I agree with Nakamova, that dr. has terrible bedside manners to tell your husband that. She should have offered more insight about what she was talking about or other alternatives.

SUDEP is rare and usually happens because of a variety of problems, ie. breathing (sleep apnea), heart problems, brain dysfunction.

And it can happen to those taking meds, also. I met a lady who lost her teen-age daughter to it and she was faithfully taking her medication.
 
Let me guess -- is your husband on Valproic Acid? (Depakote?)

I'm asking because we had a similar experience with Depakote -- he had the issues with the blood platelets, to the point where he was sent to an Oncologist for possible MDS (pre-leukemia) and had to have a bone marrow biopsy.

Also, he didn't have increased seizures at higher doses, but the higher dose eventually put him into a horrible state where he was crying all the time, and pretty much shut down cognitively. And it was the same thing -- his neurologist increased his meds because of his blood levels, even though he wasn't having seiuzres.

Going off of drugs has to be done slowly, and Depakote is one of the drugs that causes breakthrough seizures during the weaning process. We weaned off this med slowly -- took about 6 months to get off of a daily dose of 1250 (for a little boy only 43 pounds).
 
Hey thanks everyone, for your kind responses and words of encouragement. They mean a lot. And hey - Karen - yes, Mike was on valproic acid which caused the platelet drop. How weird that it was a similar experience. I thought it was weird that the meds were raised when he had no seizures. So he's been med free for about 3 weeks now and with the doctor's okay, he's staying off all meds to see what happens. Hope your son is doing okay.
 
Yes, the Neurologist we were seeing at the time was big on blood testing to make sure the patient was at "therapeutic dose."

The Epileptologist she was consulting with ended up taking Jon on as a patient, which turned out well. He said he never checks blood levels -- just goes by whether or not the patient has seizure control.
 
Hey Karen

Thanks for your info and sure hope your little guy is doing okay now.

I can never figure out why his neurologist raised his meds after 3 months of NO seizures, just to get in that level. He was doing fine and as soon as she raised them his platelets dropped and he had another seizure. Sheesh. And then she says last week that she doesn't care of it's in the level or not as long as he has no seizures. I was going to say something but decided not to. But what bugs me is that her report will affect Mike getting his license back. But anyhow, she was willing to let him go without meds to see what happens as all 4 seizures were nocturnal. But one of those seizures set off an arrhythmia he had. So it's sad to think that he had one seizure and then 3 more induced by the drugs.
 
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