Quit meds and live normally?

[mejohn1]

For 27 years I've had simple partials, with only 1 tonic-clonic this last May. I've been on Keppra, Zonegran, and Tegretol at various times and various dosages. Never have the seizures completely gone away, and I've learned to live with the frequent aura's and partials. I've even driven my entire adult life until May when the "big one" hit. I've switched neurologists, had numerous eeg's, tried different meds, but nothing has ever completely worked. I've accepted the fact that driving for all of those years wasn't the smartest thing to have done, and I was quite lucky nothing ever happened. What's bugging me the most are the side effects and costs, with no results. If I will no longer be allowed to drive, that stinks but I can live with it. And since the majority of my seizures over 27 years have been partials, I can live with those as well. Why, then, would I continue to take meds that don't' do my body any good, make me tired, and cost money that could be put to better use. Has anyone considered just walking away from their meds (obviously not cold turkey, but tapered down) and living life the way you are, seizures and all? The partials are infrequent, and without meds I always knew they were coming thanks to the aura. What the meds have done is taken away the aura and I get hit out of the blue; which I do not like! The aura was my friend, in a twisted kind of way, and helped me get myself in a safe place. Honestly, if the docs are unable to stop them, then I'd rather have my aura's back....

 

[sassi]

Someone I work with is off the meds and he's been able to control them based off of feeling and seeing the auras and somehow "deciding" not to have a seizure. Surely it's not for everyone and I would caution you against it but I also feel your pain. I would speak with your neurologist first because of the ramifications. Like I said, someone I work with walked away from his meds and is, more or less, controlling them on his own through his own willpower so I guess it can be done. I'd like to pick his brain more but I haven't had the time as I don't work with him much but next time I'm around and he is I'm going to ask to meet with him outside of work to get more insight as to how he does it.

 

[mejohn1]

I'd be curious to hear what your friend has to say as well. For years I tried to "will" them away when the aura kicked in. The best way I can describe it is that it's like this black hole to the left of me (always to the left), serious deja vu feelings, and this feeling of panic. I'm afraid that if I look towards it I'll be sucked in, and have fought hard to avoid looking at it. Sometimes it's worked, sometimes not, and off to seizure land I go. I've never blacked out (except for the grand mal in May) and they only last for a minute or less; but I could sleep for hours after even an aura. So far...meds, eeg's, mri's, etc have done little to help; and in some cases have made things much worse (Zonegran took away the aura). If I knew it could be brought under control I would stay the course, but after all these years and still having issues; it almost seems to be not worth it...

 

[masterjen]

I've had seizures for "only" 3 years, so not as long as you obviously but I am in the same position in that the medications have not been working to stop the seizures but currently am in the best position I have been so far: seizures are not as long, overall less severe and therefore after-effects are not as pronounced. Frequency has not changed, but . . . no pre-seizure symptoms. I would prefer to still have those, at least to a small degree, so I'd know I was going to have a bad night.

My next thought reading your post is, since you have always been on medication, how do you know for certain the medication is not at least doing something? If they are taking away the auras, perhaps like me they are reducing the severity and after-effects? I'm not a "pill-pusher" by any means, but just something I was thinking. Perhaps before giving up the pills you could try some alternative treatments, if you haven't already. I've been doing some reading about biofeedback, acupuncture, and the CBD portion of marijuana, as examples. If you notice benefit from some form of alternative therapy while still on your current medication regimen, then you will know for sure it is the alternative therapy that is helping (and that would be great for us to know, too).

Anyway, just sharing my thoughts

 

[Cint]

I've suffered from E (CP seizures and TC's) now for over 30 years and have tried over 10 meds, had a temporal lobectomy and a VNS surgery and still have an occasional seizure + I still take meds. Years ago, before brain surgery and when I was only taking Tegretol, I stopped taking it and ended up in the hospital because I went "status". Never again will I go without meds because I have "refractory" E. And as masterjen said, how do you know that the meds aren't doing something? Since you've been suffering simple partial seizures for so many years, have you seen an epilepsy specialist, an epileptologist at a university hospital? Maybe he/she could help find something else, along with an alternative therapy.

 

[Dignan]

While what others said about being careful and knowing if the drugs are helping you a least a little is all valid, in the end, only you can make this decision.

Those suggesting you speak to a neuro or epileptologist are understandably being careful, but I can pretty much tell you that either of those docs will not agree with you going without meds. In fact, some may tell you that they don't want you as a patient anymore, so they can avoid liability in case something goes wrong.

In the end, you know your seizures better than anyone, so you need to bring all your years of experience to bear on what you actually think you can do. Then speak to the neuro, and let them know what you'd like to do, and see if they will help monitor you through the process. But, like I said, be prepared for them to disagree. And, make sure you are being objective and realistic, and not just acting rashly out of drug frustration.

 

[valeriedl]

I have had epilepsy for 10 years now and have been on so many different meds and dosages that I've lost count. Right now I'm taking 4 different meds and have a VNS (I'm unable to have brain surgery).

At first I was having around 5 bad seizures a week. They may have lasted from 5 to 10 minutes and I'd end up in the ER a good bit. I had to change from medicine to medicine because of the side effects, because they weren't working or because they may have been causing the seizures.

Currently with the combo of meds that I'm on now and the VNS I'm having around 5 seizures a month. They aren't anything like they were before and the longest has lasted just a few minutes. I might have one TC a year but the rest are partials. It's just something that I've learned that I'm going to have to live with.

I've only had 2 different neurologists, and the only reason that I had to change was because the first one moved out of the state. I love the neurologist that I have now. He listens to what I have to tell him. If he feels that it might be one of the medicines that are causing serious problems, like not helping with the seizures or causing more, then he tells me that we should change. But if he feels there is a medicine that I'm taking that is causing less serious problems, like being tired, weight gain or loss then he gives me the decision to change.

I was however seeing his nurse practitioner sometimes and she would not listen to anything that I had to say. She just told me that I wasn't taking my medicine right or not taking it at all and that why I had been having more seizures at the time. I told the office that I wasn't going to see her any more and if I had to then I was changing neurologists. Haven't seen her since.

I don't know if you'd want to consider finding another neurologist again. Sometimes it takes awhile to get the right one. I've had to do this for other problems that I've had, not epilepsy, and it's very frustrating to find the right one.

If you feel like you should stop or change meds talk to the neurologist before you do it. As you know with meds you can't just stop taking them. You have to be weaned off of them. Just stopping can cause serious problems.