Epilepsy Research UK
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First experience

Hi My son had his first seizure on 1st Oct age 17, it was a complete shock.

He had had jerks for sometime but we was told this was down to him having hypermobility, on this occasion he had 6 jerks in a small space of time before having the actual seizure. He has been started on medication but as yet hasn't actually been diagnosed with epilepsy as EEG and MRI came back clear.

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Hello,

Epilepsy is only epilepsy after a person has had two seizures. And you report that your son has only had one.

This a medical fact that is known and agreed upon in the neurological world. Likewise I can understand why your sons electroencephalogram (EEG) and Magnetic Resonance Imaging (MRI) results were both clear. However not speaking as a neurologist or doctor (I have had epilepsy all of my life) I cannot understand why your son has been giving ant-epilepsy drugs.

The very best possible advice that I can give you is that your son or indeed you is go to your GP and ask them to refer you for a urgent appointment for a second opinion from a neurologist specialising in epilepsy to clarify everything for you.

Wishing you all well and please keep me updated.

Regards

Richard

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Hi Richard

Thanks for replying.

Callum was put on the medication before he had even been seen by neurological, we went to A&E when he had the seizure and they passed the info on after doing a MRI and first we knew was when he got a letter from GP saying he was being put on medication. He then had the EEG after that.

Iam trying today to chase up results etc as the uncertainty is causing my son to be so down

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Sadly epilepsy is not readily understood by all by general hospitals. They are are brilliant for their A&Es etc, but epilepsy which requires the specialised expertise of a neurologist does not seem to appear in their books. So please keep chasing up your GP for a fast referral to a neurologist specialising in epilepsy.

I can well understand why your son is feeling down, but please tell him to try to think positively and to put the worry of the ‘unproven’ word onto the back burner and to restart his life with a happier and positive attitude.

As usual please keep me updated.

Regards

Richard

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Everyone's epilepsy is different. Does epilepsy run in your family?

My daughter has been diagnosed with epilepsy but it did show up on the eeg, however my niece also has it but she only ever had 1 every 12 months and they kept telling her she didn't have it, fortunately one time when they were doing a test she had a seizure which is when they saw it.

I agree with Richard if you are at all unsure get an urgent appointment for a 2nd opinion.

Let us know how you get on.

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Hi Angie

My father in law has epilepsy but it's alcohol induced. Which they said would be unrelated

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Hi epilepsy can be triggered by various factors my sister go instance just fell and grazed her knee but unfortunately epilepsy is very strong in my family my 3 sisters, 1 brother, 1 niece, myself and my daughter have it. From what I have learned from my consultant is that most epilepsy is inherited and just needs an event to trigger it. Again I would consider a 2nd opinion to be sure.

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I've spent the morning chasing his consultant, only to be told he's on holiday and they will see if a duty doctor can phone me back. Callum has put his self in such a dark place he was a week away from his driving test and that's all he's looked forward to since May .

I just feel he's living in limbo and no one is willing to be helpful

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I know it is difficult but try and keep positive once he is sorted and on medication as long as he's been seizure free for 12 months he will be able to drive. I know it is scary at the moment. I remember when I was diagnosed it was just before my 17 birthday I had it all planned out about learning to drive, I was also devastated as I thought I'd never be able to learn to drive. Keep thinking positive and you will get there.

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Thank u Angie x

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I was always led to believe it's not genetic or family led etc, I started having seizures at 17 and no one else in my family has ever had any, the thing is I never really had any info or support from a specialist 😞

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I'm so sorry to hear that I know that epilepsy is very strong in my family, however some people do get it without any other family member having it.

If you are not getting the support you need from your consultant I would ask to be referred to a different one so you get the support you need.

Please let me know how you get on xx

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Consultant phoned callun will be seen on Wednesday

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That's brilliant let me know how you get on.

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So sorry to hear about your situation it sounds awful. Just bear in mind it is quite common for EEG and MRI scans to come back negative (mine did) as the will only pick something up if you have a seizure or some other kind of unusual brain activity while you’re being monitored.

Also the jerks ARE a kind of seizure so it sounds like your son probably does have epilepsy.

I hope you find the consultant to be a good one.

Amy xx

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Hi my daughter Beth’s mri was ok and 2 eegs came back inconclusive. Hope u get some peace of mind soon. Beth’s medicine can affect her moods as well as the epilepsy itself x

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So today Callum was diagnosed with having primary epilepsy, they took into account the jerks and the 1 seizure he had plus family history to make there diagnosis.

To say he is devistated is to say the least, he thinks his life is over as his friends will all be driving before him ( this is all he's gone on about since he was 16).

His medication has been increased to 400mg epilm twice a day. I just feel totally helpless

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So sorry . Sending big hugs.

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Thank u, suppose it will just take time to get used to on all parts

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I went on young epilepsy site and got a free book on epilepsy and Beth got a teenager diary book we only had to pay for p and p £4 . Took 3 weeks to come but they have answered a lot of my questions and are full of helpful advise x

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I'm so sorry sending hugs for you and your family.

It is not easy to accept or deal with I was 16 when I was first diagnosed an I thought it was the end of the world as I was also getting ready to learn to drive.

I was so low at times and thought no one would help or understand me. I was lucky enough to find an amazing consultant and epilepsy nurse when I was 23 who helped me a great deal and when i was 30 had my daughter got married and the had my son son when I was 34 I still have a fulltime job but obviously there have been lots of ups and downs. My medication has controlled my epilepsy and I've been seizure free now for 5 years. My daughter was diagnosed with epilepsy 2 years ago and I constantly worry about how she is feeling but she seems to be handling it ok she is on medication lamotrigine which seem to help control hers, she also knows that I am here for her to talk to as well as other members of our family.

I'm sure your son will find his way and he has you to talk to.

I send you my best and hope things look up for you all.

Angie x

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Has anyone claim DLA for epilepsy I was told Callum could apply but I didn't think he met the criteria

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I am waiting for the form to come, I was told to try for Bethany and write lots of details about the help I give her and the risks of me not helping her ie if she forgets her medication she could have a seizure . I read it’s how much help compared to a “ normal “ 14 year old. Even reminding/prompting her to eat and get enough sleep. The form is very long x

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Oh really even at 17 Iam constantly at callum remember meds, have u eaten, make sure u sleep. I hate forms

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I would wait and see if they reoccur cos nearly everyone has 1seizure sometime in their life. If has another one, then is the time, to see and report to neurologist!

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Callum already has seen a neurologist as he had the seizure out side he was taken by ambulance to hospital and they have diagnosed him with epilepsy. He has been having partial seizures for a couple of months but we put him t down to other health issues he has

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