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Hi Just Wondering How Long Any Of You Waited For Your Epilepsy To Finally Be Diagnosed.

Hi Just Wondering How Long Any Of You Waited For Your Epilepsy To Finally Be Diagnosed.

I was diagnosed with temporal lobe epilepsy 3 years ago but if I'd known then what I know now about epilepsy I actually had my first seizure 12 years before that. I remember I was sitting reading a book when I got a horrible feeling of deja vue and couldn't speak for several minutes. It really scared me. I went to my g.p and he said it was just a migraine.The seizures continued off and on and each time I told him my symptoms he just kept saying it was migraines. Finally things were getting so… read more

A MyEpilepsyTeam Member said:

My epilepsy was misdiagnosed for 18 years! I was diagnosed as being bi-polar, and put on all the wrong medication. It took being in a near fatal car accident and in a coma for almost three months, and a very intelligent doctor to make the right diagnosis and get me on seizure meds, before I began to get better. I was having no less than 33 seizures a day. Now I am down to about 3 a week. It has been a long hard road!

posted almost 4 years ago
A MyEpilepsyTeam Member said:

Hi nightowl good to hear from you. I was actually 46 when my seizures started! I hadn't a clue what was going on I just knew that something wasn't right but like I was saying I was told it was migraines maybe my g.p wasn't familiar with the symptoms of epilepsy. I began to think that in the words of the Queen song 'I'm going slightly mad'! I was prescribed Lamictal by the neuro and that has helped though every 3 or 4 months the seizures get bad again so the dose is increased.

posted almost 4 years ago
A MyEpilepsyTeam Member said:

Hi Randy That's great you're doing good! My meds i.e lamictal have made a real difference the only hasle is that the dosage has to be increased every 4 months or so cos the seizures tend to return. But as far as I'm concerned it's just something that happens from time to time. I am someone with a good sense of humour and a great outlook on life so they might annoy me but they'll never as you said get to me

posted almost 4 years ago
A MyEpilepsyTeam Member said:

Your parents must have been been so scared when you suddenly stopped moving and turned blue but thankfully the medics were able to make a diagnosis. While epilepsy affects your life i.e seizures it's a condition that can be controlled with medication and doesn't affect your quality of life.

posted almost 4 years ago
A MyEpilepsyTeam Member said:

I didn't start having them until I was about 17 or 18. I Didn't tell anyone about it until I was about 21. I didn't know what was going on, I would get deja vu, feel weird, and get confused for a few minutes. Finally I looked it up online and it said seizures. I freaked out and went "no, not me!" it kept going on and I finally told my parents and went to the doctor. He didn't know what to think. First it was wrote off to thyroid issues and insulin resistance. Those got treated and it still went on. So I went back and asked to be sent to a neuro. As soon as the neuro heard me describe what all would happen, he said "Yes, seizures. Complex partial seizures." Don't get me wrong, my family doc is a great doctor, at the time he hadn't been in practice for very long and just had not seen it before.

posted almost 4 years ago
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