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kimahsam · Jul 7, 2009, 07:48 AM

hi I'm 21 and I've been told I have got to the point where I have 2 more drugs and this is where they start calling it refractory epilepsy I have a choice between going for vns or surgery again or try these last 2 drugs 6 months for each I said to myself I still feel down in the dumps they said its dangerous about surgery and I've spoke to people on a epi chatroom / forum about vns it doesn't look very good and since I've been told it looks like refractory epilepsy I think I've been depressed I've had epi from 3-6 months old had a right temporal lobectomy at 9 yr old you think id of got over it? What shall I do? About being depressed and pissed off about things what do you think? Sorry about language will I get banned? ps sorry to coming to you about my probs x.

tickle · Jul 7, 2009, 01:46 PM

If I had to choose between more meds and vague nerve stimulation, I would pick vns over anything. I have heard good things about vns, but realize it is not for everyone. Everyone being those who would find it to be invasive but when you think about it, there are a lot of young people with pacemakers. My son has defib installed and he is 27, but he didn't have any option.If it ever gets turned off, (he has to stay far away from electrical equipment) I won't have him around any longer.

Your language wasn't bad, just let it come out. We are here for you.

When you make the ultimate decision, vns or more meds, then you will become less depressed and pissed off.

Kindest regards and hugs

Tick

kimahsam · Jul 7, 2009, 01:52 PM

What do u think about surgery thts dangerous?

JoeCanada76 · Jul 7, 2009, 02:22 PM

What are your surgery options. Of course, any surgery there are risks. It seems though medications are not controlling your seizures well.

VNS, even with that you still will need to have your medication. The treatment success varies from person to person.

VNS is an implant it has side effects as well.

Also about feeling angry and having all these emotions and feeling the way you are is normal. Especially considering what your going through,

Many people have epilepsy and severe at that and you need to be able to get into support groups that will help you meet people that are in the same situation as you.

Also would like to say that medications side effects and epilepsy itself can have an effect on moods and emotions.

I would also like to say that have you looked into getting second opinions, seeing different neurologists and surgeons. It would not hurt.

Of course, in the end it is up to you but remember there is so many different epileptic medicines out there and it takes a lot of trials and errors to might find the right one or combinations that work best for you.

kimahsam · Jul 7, 2009, 02:33 PM

I've had every drug under the sun except topamax and lacosamide I've tried many combinations, I'm not so kean on vns implant with bad or soar throat etc the nurse said this is the point where we start to call it refractory ep

donsadrienne · Jan 8, 2012, 08:59 PM

I do not know if this will be helpful or not, but I have had a VNS almost 10 years now. At the beginning , I was told that I would probably get to decrease taking my meds but I take more meds to this day now and have been diagnosed with bipolar disorder now as well. Epilepsy to me was never really a complex disease because I have had it since I was a child. Now though I dread not having that VNS. My battery right now is actually very , very low and I could not get another appointment to get another put in until 1/18/2012. But I did not know it was helping me as much as it is until the battery became weak and now , well now there is not a lot of anything. I have taken many drugs as well. Many. I could do better with the ones they ask me haven't I had instead of what I have had. I am glad I have found this website and I hope and pray to make friends here since my friends do not have epilepsy and so on. I will also say one more thing... if you do decide to go through the surgery make sure the Doctor knows what they are doing because I had it done when it was all fairly new down here. Blessings to you all.

donsadrienne · Jan 8, 2012, 09:02 PM

Dear Guys,
I wanted to ask if any of you have any of have a VNS and what it feels like when the battery has stopped working? I know that is what has happened, but I am also having side effects like tiredness all the time, coldness, can anyone relate please tell me. I need help.