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Vijaya

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I came across this marvellous website when I was surfing the net for some answers. So glad to see so many supportive and informative people here.

I have been diagnosed with Grand Mal when I was maybe 3 or 4 years old. I take 30mg Phenobarbital daily. When I was 13 my doctor tried to gradually weane me off the medication but that resulted in a full seizure so I was put back on it. Again the same was tried when I was 22 and I got another seizure. Thankfully I was at home both times. I decided then that I was going to take my pills regularly no matter what and not try to be weaned off because I know it wont work. I have been seizure free for the past 18 years. I am 40 now and still taking meds daily without fail.

My family doctor thinks I should go for an EEG. My memory of this from childhood is that it makes me have a seizure. So I am worried to have this done.

The reason I was surfing the net today was I had a vivid dream about having a seizure and was calling out to my mother (who is deceased). When I woke up I realised it was only a dream. I dont even think about my seizures now after so many years so why did I dream it? Is this a premonition or did I have one in my sleep ? I felt paralysed on waking but my face was clean and I had not wet myself. So could not have been a seizure during my sleep.

Any doctor I talk to would advise me to change from Phenobarbital, but I have immense faith in this drug. I am unwilling to change as I remember the trial and error method all too well before I was put on this one. Does anyone know if Phenobarbital can be taken life long without side effects?

Thank you.
 
Hi Vijaya --

Welcome to CWE!

Because Phenobarbital is an older drug, a lot of docs don't like to prescribe it. But it works for plenty of people. A friend of mine has been on it all her life, and like you has no intention of switching or going off of it. She has no long-term side effects.

If you don't want to have an EEG or make any changes to your meds, that's your choice.

I don't think your dream is anything to worry about. I very occasionally dream that I'm having a seizure, but that's all it is.

Best,
Nakamova
 
Welcome, Vijaya!

I'm happy you found us here in the forum.

Did your doctor say why he wants to change you from phenobarbital to another drug, when you are currently symptom free? Hopefully you have a doctor that works together as a partner with you, and will listen when you say you want to stay on this drug. If not, then you have the right to see another doctor!

Again, welcome!
 
Hi Vijaya! Welcome to CWE! I'd say that you were just having a bad dream. Phenobarbital can be used for seizure control forever. If you aren't having bad side effects with it, and it is working for you, I'd say don't switch. Sometimes docs get meds happy and forget that just because there is a new med out does not mean that we HAVE to try it... :)
 
Welcome Vijaya - I hope that you find the support and information here at CWE that you are looking for.
 
Thank you for understanding and replying. You get me !!
It is good to know that Phenobarbital can be used lifelong without complications.

Best regards

Vijaya
 
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