Hi all, I was diagnosed with Epilepsy approximately 30 years ago, i had a spell of nasty seizures. However I was controlled for decades on Phenytoin without my levels checked or being given any care regarding Epilepsy since that time. This lead me to hiding other ill effects, including from the medication itself and as a partial consequence i lack achievements mainly on a career level, I do a concerning job for Epilepsy sufferers, with no skills. After changing from Phenytoin to Keppra its like I have woken up and looking at my life a 40+...... im concerned, I need to learn something safe as my Epilepsy is definitely deteriorating having nocturnal Seizures every few nights. Compared to many others im more controlled but I need to put things into place somehow. This year I now have a Neurologist, in contact with a nurse, changed medication, had MRI, ETC, trying to hunt down my medical records as I am confident I was unconscious for 20 minutes but I remember the consultant saying never to come off Phenytoin, I wonder why. I came off Phenytoin because of toxicity.
Newie: Hi all, I was diagnosed with Epilepsy... - Epilepsy Action
Newie
Hi Memyselfandi1
Thank you for your post.
The doctors always advise people to never just stop their epilepsy medicine. If someone needs to stop or change their medicine, it must be medically supervised. If you experience toxicity of Phenytoin that is a reason for the doctors to change your medicine.
epilepsy.org.uk/info/treatm...
epilepsy.org.uk/info/treatm...
If you are wanting to look at a career move, if you haven’t already, you may wish to view the work section of our website. It includes information on support and help when looking for work.
epilepsy.org.uk/info/employ...
Most jobs are possible for people with epilepsy. It all depends on a number of things. For example, your seizure type, seizure frequency, and maybe the need of some reasonable adjustments in the workplace.
epilepsy.org.uk/living/work...
To help you look for work or retrain you could talk to a work coach. Work coaches are based at Jobcentre Plus, they can help you in your search for a job, or to gain new skills. They can also tell you about disability friendly employers in your area.
gov.uk/looking-for-work-if-...
When you’re looking for work, look for the disability confident logo on adverts and application forms. The logo means the employer is committed to employing disabled people. If a job advert displays the logo, you’ll be guaranteed an interview if you meet the essential conditions for the job.
gov.uk/government/publicati...
We also have our employer’s toolkit to help employers support employees with epilepsy in the workplace.
If we can be of any more help, please feel free to contact us again, either by email, live chat or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm
Regards
Diane
Helpline Team
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