Where is the Quality of Life Tipping Point?

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Dignan

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Hi all,

I read about people who have decided to end medication for alternative treatments or even without just because they have decided that they don't like the way drugs make them feel and would rather take the seizures.

In my case, I've had 7 seizures over 21 years and the recent changes in my drugs, plus the other effects on my health caused by some of my past drugs (bone loss, etc) have made me start to question whether I would be better off going it alone.

I'm sure my neurologist would never agree to this, but I look at it as my choice not his. He tries to scare me by telling me a seizure could kill me, but what good is a life feeling doped up all the time or unable to participate in the things that make life worth living?

I'd understand more if I was having 10 seizures a day every day, but that has never been my case. Has anyone gone this route or know of anyone who has gone this route? If so, what has been your/their experience and was it worth it?

Thanks:rock:
 
Dignan,

How long have you been seizure free? If over 3 years, your docs may very well consider taking you off the drugs, very very slowly. Have they checked your EEG? How is it doing? If it's fine now, too, I'd be surprised that they said, "no."

If you've been seizure free for UNDER 3 years...

I so understand how you feel. On almost all the meds I tried I constantly wanted to go med-free. Then I tried Lamictal, which turned out to be my magic pill. Very few side effects for me. Others hate it, and have found another med that is best for them. If you want to keep trying - maybe the next pill you try will be the one that is good for you.

Please do listed to Epileric before you go off the meds. He decided to do that, too, with not great results. Your doctor is right. A seizure can kill you. He is talking about either going into status epilepticus, or SUDEP (Sudden Unexplained Death in Epilepsy) and other causes.

There are many people in here who have gone off meds, with disaterous results. Only a few who have done the same and have had good results. Almost all of those have had another root cause for their seizures, like celiac's disease, diabetes/hypoglycemia, or in my case IIH (intracranial hypertension). But I'm still on the meds. The docs want to make sure my seizures are minimized until the underlying condition is fully treated. Many people have been helped some by neurofeedback, only a very few completely cured.

If you want to go off the meds, please do so very slowly. As in, down 1/8 or /16th dose every couple of weeks. Then if you have a seizure it's very easy to go back up in dosage. And you're less likely to have drug withdrawal cause a seizure.

Have you thought about going to another neurologist to get a second opinion?
 
Hi Dignan --

I'm always hoping I can go off meds, and several times over the past 11 years since I was diagnosed I've given it a shot (under doctor's supervision). Unfortunately, I've had no luck. The last time I tried it, my seizures (tonic-clonics) began escalating in frequency, so I went back on the meds. In May I'll be 3-years seizure-free so I'm thinking about trying again -- but this time I'm hoping to save up enough money to try neurofeedback first.

I think it's important to have a plan in place if you do decide to taper off: Make a list of things to do to be proactive about your health. If you have a sense of what your seizure triggers might be, write them down and figure out ways to avoid or minimize them. Ask a family member or friend to check in on you from time to time. Keep a seizure diary, so that if seizures occur and start increase you'll have a way to track them. Figure out a worst-case scenario (loss of driver's license? injuries?) and make sure you're prepared. And then focus on the best-case scenario (improved quality of life) and all the ways you will be proactive in maintaining it.
 
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