Me again!: Hi Hope you're all well; my... - Epilepsy Research UK

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Me again!

Shelleybat
Shelleybat
11 Replies

Hi

Hope you're all well; my MRI is booked for tomorrow and EEG 14th November. I'm feeling fine if not a little tired but am putting that down to adjusting on every level!

I wondered if in anyone's experience, whether your seizures tend to happen around the same time of day or evening? Both of mine were late PM, so wondering if that's more likely to be when they happen or if in fact it's a nasty game of lucky dip?

Thanks

11 Replies
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sally36578

Hi Shelleybat. My name is Terry Weaver. I've had epilepsy since i was 6 years old. I'm now 48 years old and i've come to terms with my condition. There's alot of things i can't do, but wont let that hold me back from doing the things that i enjoy, and you shouldn't. Thinking about you and good luck with those appointments.

1 like
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Shelleybat

Thanks Terry

I don't intend to but will be glad when all the tests are completed!

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SJClaverley

Hi again,

Mine use to happen more often during the night, be coming back to bed from the bathroom or in bed. But now they are random all very similar, I keep a diary with details & also if anything else that could have triggered it such as stress then relief as my neurologist calls the overflow dam. Any changes.

Good luck

X SJ

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RR25

Hi Shelley, it is possibld that late PM is when you could have them as sometimes they have a pattern. You could be more tired etc. Majority of the time I get mine wakening in the morning. Id say getting your head around your new diagnosis is hard. Good luck with your mri and eeg.

Take care

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Shelleybat
Shelleybat
in reply to RR25

Hi there

MRI all done; I'm feeling good and the Lamotrigine seems to be settling in ok. I have to increase the dose on Weds but am taking a leaf out of terry's book and intend to not let this run my life. I'm lucky that I have a good support network around me and work are being great. That takes away a lot of the pressure.

EEG is on the 14th November so will hopefully have MRI results by then. Worst thing is not driving but I'm going to push for 6 months as no one can actually confirm what the second "episode" was... the neurologist was a bit whatever about it, but I've had no formal diagnosis and feel that he just made a snap call; at the time I was so tired I didn't question it but I'm going to now!

S x

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Beansheen

Have you only had one seizure?

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Shelleybat

Hi

Yes, one seizure and then the following evening I had some sort of "moment" where my words were scrambled. I was super tired and it lasted for about 90 seconds. They initially thought it could be a TIA... but CT was clear. Put straight onto Lamotrigine. Nothing (touch wood) since. I haven't been told what that second incident was, nothing. The neurologist was pretty dismissive .... 🤷🏼‍♀️

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Beansheen

Oh, I’m sorry, I see that you have had two. I only asked as sometimes they do not make a definite‘epilepsy’ diagnosis on one ..... but it’s early days for you so definitely the right screening and lots of positives to look forward to. Good luck indeed, I look forward to hearing how you’re doing.

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Beansheen

So sorry, just seen earlier comments too,......tough times, I know from experience, good luck, I will check messages better now!! Xx

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Shelleybat

No worries, it's nice to share my frustrations!

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edwin_stella

I was diagnosed with temporal lobe epilepsy when I was 12. I'm now 38. Anticonvulsant medications kept my seizures under control for some years but I still experience symptoms of it often until I contact doctor lawson and he assured me of permanent solution to my long-standing problem. I was well aware that many were not so fortunate. I knew I'm in the company of millions of epilepsy patients, though, who daily contend with the side effects of these medications. I was frequently apologizing to family, friends, and students for forgetting words and trains of thought . This “brain fog,” as I’ve come to call it over the years, is an obvious biological response to chemicals meant to slow neural activity. One particular aspect of my life that the brain fog has affected has been my creativity. Along with many people with epilepsy who are drawn to the arts, I’ve always wanted to be a creative writer. Some neurologists have said that those with temporal lobe epilepsy in particular have a “disorder” called a hypergraphia, a nearly uncontrollable compulsion to write. Whether I have a disorder or not, I know only that I feel a need, a calling, to write and the side effects of my medications have inhibited my ability to find the right words. But then, about six months ago, I came across an unconventional creative writing medium called blackout poetry. You take a page of a newspaper or a book and search for your own message within the words on the page. I contacted (dr.lawson), and used his herbal medicine What a relief ! So I could think any other thing only to tell people who are suffering from this deadly disease Seizure that there is a cure to it. Do not be blinded by Ignorance, There is a cure to Seizure as I personally experienced it. Dr.lawson52@gmail. com

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