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Newly Diagnosed - looking for advice

Tue, 05/01/2018 - 15:38
Hi everyone! Im 33, living in the UK. So...Ive been diagnosed (last night) with Focal Onset seizures, I believe they were simple partial seizures. Ive had this for a year and been told constantly I have an anxiety disorder, kind of relieved to get a diagnosis to be honest. My neurologist is starting me on Lamotrogine, however hasn't said how much or when he will increase, I just have to collect from my GP in a few days. Has anyone had any success stories n Lamotrogine? Ive done a bit of research on meds but not much and he wanted this one as we start IVF in 2 weeks so needs to be OK if we get pregnant. This is all really new to me and i feel like a little bit of a fraud as my seizures, whilst seem a lot to me, are mild in comparison to a lot of people. I get a strange rising feeling, butterflies, hot and a rash on my chest, sometimes i get a burnt smell, my vision seems either blurry or really sharp, I feel dizzy and i get either numbness or pins and needles in my hands. It lasts around 1 hour before I feel normal again and im shattered after. Anyone else like this? Just looking to speak to people in this situation, or anyone with any words of wisdom for a newbie :-) Thanks

Comments

Do you ever feel a strong

Submitted by I worry too much on Wed, 2018-05-02 - 14:15
Do you ever feel a strong sensation of déjà vu or familiarity? I have all the same symptoms as you minus the burnt smell. How often does this happen to you?

I also have all the same

Submitted by nmontalban93 on Tue, 2018-06-12 - 12:27
I also have all the same feelings except burnt smell and rash, but then I get either an out of body experience or j'amais vu or deja vu. I was diagnosed 5 months ago and started Lamotrogine today 25mg today and then increase to 100mg. 2x a day over 8 weeks. I also have struggled with accepting that I really have seizures, feeling like a bit of a fraud. But as far as I know my drs feel very comfortable with the diagnosis, and 2  neurologists have confirmed. Hope this helps.

Thanks both for your comments

Submitted by sibbo84 on Wed, 2018-07-25 - 06:24
Thanks both for your comments. Nicola M - do you only have simple partial/focal seizures? Have you ever had any others? I know what you mean about feeling like a fraud, but my doctors are the same so I think we just need to trust them. I am on Lamotrogine, just been upped to 100mg per day (50 in morning, 50 at night) they have said I can go up another 50 a day if needed before being referred back to my neurologist.I have mild deja vu, something Ive only just realised happens. Mine are mainly just the oddest feeling, like very uncomfortable. I had a some last night when I was going to sleep, I would feel very strange and like a rush would come over my body. It happened about 4-5 times before I managed to fall off to sleep. 

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