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Refractory Epilepsy &hopeless
Mon, 07/03/2006 - 06:42Topic: New to Epilepsy.com
Hi I'm Belinda
I've had epilepsy since I was two.
I've had a RTL in 1982.
Been on 19 different AEDS.
I got my 1st VNS 1-21-00 my 2nd was 5-24-02
Nothing controls me decently longer 3 or months.
I'm either allergic to a lot of meds or med resistant.
I've been on tegretol since came out can't come off it.Can't take it XR sends sz's through roof like any med that's in Tegretol family that's not original Tegretol.
Surgery out of the question.
Life is lousy.
I have complex partial,generalized,simple partial, absence,and tonic -clonic.
Belinda
Comments
Re: Hi Belinda... I've been
Submitted by happycat2 on Wed, 2006-07-12 - 23:23
Oh Belinda what can I say. I realize it is tough to live with when meds do not work. Have you thought of trying anything relaxing to do that might help. I have found that low-impact exercises like swimming, walking, water aerobics and stationary bicycling help. All these can help your mood, and the research tells me can reduce pain while maintaining strength and flexibility. Always-as you and everyone else knows well by now consult your doctor before beginning an exercise program.
Please keep us updated on how things are with you, it helps. Along with keep talking-it helps to, along with staying as positive and upbeat as you can.
Cat.
"Many false prophets are gone out into the world." 1 John 4:1
Hi Belinda... I've been
Submitted by solis on Mon, 2006-07-03 - 17:23
Hi Belinda... I've been where you are as I've also had seizures since I was very young (Later than when you began , age 3, but I've already coped for 49 years) Life isn't lousey. Life is what you make it. Sure; epilepsy is a bummer, BUT.. and this is a biggie... we can see, hear, can eat sugar, & don't (physically) have a debilitating condition. Looked at from that perspective..we're fortunate. After 'finally' gaining over 10 years control, I 'lost it' and then I experienced depression like NEVER before. Not only was I in morning for the 'immediate' effect of that seizure (while driving), for the first time in my life I had the 'control knowledge' so, I was also in morning for 'all I then realized I'd had lost' due to the uncontrolled seizures throughout all but those 10 years of my life!! So, I asked my epileptologist (= a neurologist that specializes in E) to recommend a psychologist experienced at dealing with epilepsy's effects. She sent me to a psychiatrist & I've been seeing her for over a year... and my mindset has altered. I just had surgery in January..so far so good.. but even if things don't work out, I'm now more satisfied with myself and life than ever before. So, if you are having a rough time coping (and I agree, it isn't always easy) I suggest you see a psychologist or psychiatrist experienced in helping people with E cope. ~sol