Epilepsy Research UK
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Question about your epilepsy care

Do you have an epilepsy specialist nurse that you see regularly? If so how often? Is he/she easily contactable in between visits? We're very interested in hearing about your experiences.

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Even though I am fully controlled, I still see an epilepsy nurse once a year, or more often if I am going through a high-stress time in life.

There are two specialist nurses that work in my region and I know them both well by now. They seem to be genuinely lovely and caring. They have a phone number that I can contact if I need some advice or something. It goes to an answering machine and I have to leave a message, but they have always got back to me within 24 hours.

I know that not everyone has this, so I feel privileged.

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I have just changed Neurologist back to the one I was seeing 4 years ago and will be seeing him every 4-6 months so no need for a nurse in between. But the Neurologist I was seeing was that busy I only saw him once a year! and saw the Epilepsy Nurse in between, every 6 months. She was very knowledgeable, and was contactable by phone ( and by email) whenever I wanted during the week. However, I would rather be seeing the Neurologist.

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I don't have access to a specialist epilepsy nurse although I imagine I could contact one as a member of the Epilepsy Society

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NO the the specialist was over eight years ago. Other than lapses and the occasional fit mainly controlled with epilim (200mg) ( low dose) as for nurses no, if it wasn,t for my friends i would be on my own ( i also have an ICE necklace with a USB stick if i wander) .This is why i stay on my own in a safe enviroment. and at the moment also going through a lot of stress with the DHSS etc ( fitting more at night - this week i think i head butted the radiator at night )

cheers

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I am fortunate enough to live in an area where I am able to contact my epileptic nurse when required. I don't need to contact her regularly at the moment but I know that she is available. The reply isn't always immediate but I know she will return my call. She is also able to talk to my neurologist and get back to me with an answer or advise me to come into hospital to talk with her. She has sorted out minor issues and reassured me when necessary. All epileptics should have the same service and not just take pot luck according to where they live.

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Strangely after 40 years I have received a letter from the Epilepsy Nurse introducing herself. I think I have been off the radar!

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I was due to see my epilepsy nurse in 1 years time and my consultant in 5 months time , with a 6 month gap between the 2.As my focal seizures have increased the have moved my appointments forward by 5 months

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I did not know there was such a thing i see my consultant every 5/6 mths

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I see my epilepsy nurse alternately to my consultant every 4 months in between time ss I can phone or email her at any time with any problems the service is GREAT!!

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How do I contact an epilepsy nurse? It would be nice to talk to one as I have many questions I would like answers to.

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I spoke to my GP and requested that he refer me to a local nurse specialist. Haven't seen my neuro since my 1st appointment with the nurse. He is incredibly knowledgeable and empathetic. My neuro was awful! Just go have a word with your GP hun.

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Thank you for your reply. I will ask my Doctor to point me in the right direction.

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Due to being diagnosed with light sensitive epilepsy I need to find some glasses that darken quickly when entering very brightly lit shops, I am having to wear sunglasses at the moment and beginning to feel very conscious of people looking at me a wondering why I have sunglasses on. Opticians tell me that there are no glasses/transitions etc that darken when

you enter brightly lit shops. I find this hard to believe when you consider there are approximately 600,000 people in UK who suffer from epilepsy, I can't be the only one who dreads entering Boots, Debenhams, etc. Can anyone advise me what to do?

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I am pretty sure this is not true, just based on the fact that I have seen other people who have light sensitive glasses that darken indoors. I wouldn't know where to get them from, though.

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Thanks for your reply Amy

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at the opticians there are reactalite lens maybe abit expensive but they do have them i got mine at specssavers and just recently asda opticians do them hope this helps

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I am in India and working as Software Engineer 23 yrs of age. Suffered epilepsy 2 fits during sleep at night 3 yrs back and i was put on Epsilon 300 mg tablets Phenytoin sodium 300 mg for 2 yrs, 200 mg for 6 months & 100 mgs for 6 months.Therefore on the advice of doctor the treatment was discontinued & I left medicine. I again suffered 2 fits during night sleep after 20 days of leaving medicines. Can anybody tell me whether the disease can be cured permanently after taking the above medicine for number of years. The doctor advised me that the medicine may be continued for whole life. I would like to add that all the Tests EEG and MRIs conducted were normal and nothing wrong in the tests. What should I do now. Is there any drug available in the world to cure the disease. ashukaka907@gmail.com

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As far as I am aware, medication does not normally "cure" epilepsy. For some people it will go away at some point in their life, just like it appeared in the first place, but this is not anything to do with the medication. For many people the seizures will never stop if they do not take medication.

I got a kind of epilepsy called juvenile myoclonic epilepsy which starts around puberty. I got it at 14 within 2 weeks of starting my period. Because it is related to hormones, for some people it stops after a few years, so I didn't take any meds for a long time in this hope. However when I got to 18 or 19 and I was still having seizures I was told it was unlikely to stop. After a few that didn't work, I was eventually put on a medication that stopped my seizures, but warned that if I ever come off it they were likely to start again. Recently I reduced the dosage (because it can cause complications with babies), but I do not intend to stop it completely any time soon. I was also warned that if you come off a medication and start having seizures again, the same drug may not help you in future.

I am 27. I have a sister-in-law who is the same age as me and got epilepsy as a teenager as well. Unlike me, she went on meds straight away which also controlled her well. Recently, though, she decided she wanted to come off them completely. She has now not taken any medication for about 8 months and is absolutely fine. So this gives us all hope!

I hope that answers your question.

Amy

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Hello ashukaka907

Further to AmyBadd's response, she is absolutely right anti-epileptic drugs don't cure epilepsy (there is no cure for epilepsy), they just stop seizures from happening (in the majority of cases). Epilepsy is a constantly changing condition, and if a person has been seizure-free for a long time, their neurologist might suggest they slowly withdraw from their medication to see if the seizures remain controlled. It's a big decision though, because as AmyBadd said if the seizures aren't controlled, re-starting the same medication might not be as effective as before. The most important thing is that you don't change your medication regime without the close supervision of your neurologist.

In terms of the EEG and MRI tests being normal, this is often the case because if a seizure doesn't occur whilst the EEG recording is being done, the test will come back as negative. Also the MRI is used to detect structural damage to the brain, which is not necessarily present. There is no single definitive diagnostic test for epilepsy; doctors rely on a number of tools (including witness accounts of a person's seizures) to make a diagnosis.

If a neurologist has prescribed an anti-epileptic drug/combination of anti-epileptic drugs for you, and they control your seizures, you need to continue taking them as prescribed. If you are experiencing unpleasant side-effects, you can discuss this with your neurologist and he/she will be able to tell you if a different medication might be more suitable.

All the best,

Delphine

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No. However I do see my consultant neurologist at supposedly 6 month intervals (last time 8, nearly 9 month's and then only after severe prompting). I have partial complex seizures believed to be caused by a medial temporal lobe abnormality (thought to be a slow growing low grade tumour). I have MRI head scans at 6 month intervals to monitor tumour progress although as yet not heard results of last scan from 5th Dec 2013 so assuming no news after 4 months = good news but I am not confident of hospital admin or management. Have enquired at my GP surgery if they have an epilepsy nurse or any person with a special interest or knowledge in epilepsy and was told no and given no further advice. I am suffering a variety of other symptoms that they say are not connected to either the tumour or the epilepsy and are most likely stress or anxiety related (if this is the case surely some form of help or support would be useful but none has been offered). Certainly better communication would help immensely. How Horner's syndrome with no cause found other than 'we suspect there is probably some damage to the peripheral nerve controlling the right eye but don't really know' can be stress or anxiety related I don't know and gives me no confidence in their skills and patient management. My current medication is 2500mg Keppra daily and 150mg Lamorogine daily (lamotragine added at last consultation in late November 2013). Since introduction of Lamotragine there has been a slight improvement in both severity and frequency of seizure but no improvement in other problems.

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