Live epilepsy advice and information online
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We are going to take a break for the summer holiday, but hope to be back in the autumn.
If you’d like some advice and information please remember you can contact us on our Epilepsy Helpline (freephone) 0808 800 5050. Or, you can email us at helpline@epilepsy.org.uk.
You can also find lots of information on many epilepsy related issues here on our website.
Every Tuesday and Thursday from 12.30pm to 1.30pm, UK time
- “Can I drive?”
- “Is it possible to take the Pill when you have epilepsy?”
- “Will my little boy’s epilepsy go away?”
- “Can my daughter go swimming?”
- “I want to go to Spain on holiday, is it safe to fly?”
These are just some of the things that people contact the Epilepsy Helpline (freephone 0808 800 5050) to discuss. Some people prefer to write to us or email us with similar questions. You can now also use our twice-weekly online advice and information session.
What is it?
It’s a special live advice and information service that you can access through Epilepsy Action’s website. Each session will start at 12.30pm and finish at 1.30pm, every Tuesday and Thursday (UK time).
How it works?
When the session is open, between 12.30pm and 1.30pm (UK time) on Tuesdays and Thursdays, you'll be able to join the session:
2. Log in as a guest, by entering your first name or a nickname in the box in the top-right hand corner, labelled username, and click on Login.
3. Click on 'Online advice session' towards the top-left hand side of the screen
What are the benefits of this service?
- You will get an immediate answer to your questions.
- If you don’t want to speak on the telephone, this could be a good alternative.
- You can read other people’s questions and answers, without having to contribute.
Feedback
If you've used the online advice session, please leave us a comment below saying what you thought of it. If you've not used it, then please leave us a comment saying why not. All feedback is very useful.
Epilepsy Helpline
- UK freephone 0808 800 5050
- International +44 113 210 8850
- Email: helpline@epilepsy.org.uk
- Txt msg: 07797 805 390 info
Twitter Updates
Epilepsy Action blog
Comments
I spoke with Rosanna about problems i was having at work who was so helpful and provided me with ideas as to how i should try and solve the problem and provided telephone numbers and useful websites. I was very grateful for the advice.
Thanks Again
Hi Denise
Outings to theme parks are generally ok for people with epilepsy. The theme parks will have general safety precautions in place, and should state any rides that have to be avoided. If your JME is not controlled, you may wish to check with your doctor or epilepsy nurse first about rides and what may be best for you.
Some attractions may involve flashing lights, which may need to be avoided by people with photosensitive epilepsy. If a flashing light comes on that you think could trigger a seizure, you should immediately cover one eye with the palm of your hand and turn away from the light.
I hope you are able to go on your day out, and have a good time.
Diane
Epilepsy Action
hi ya there as i have put down my name is Denise i am 18 years old the problem is that i am supposed to be going to a church outing to DrayTon Manor theme park but im not sure if there is any point in me even attending because i have epilespy JME [juvinele myclonic epilespy] i am on medication for it but im a bit apprenhencive about it
there will be 3 adult''s there with us .
there are 4 teenagers there as well as me so technicaly there are 5 of us.
i would like any suggestions on this because i do not want to let my fellow church friends down.
Thankyou ever so much if you do do give me advice thankyou.
We’ve never come across a connection between epilepsy and kidney disease. However, we’re not medical people so it would be advisable for you to ask your kidney specialist or epilepsy specialist about how the disease could affect your anti-epileptic drugs. I hope you get better control of your seizures soon.
Hope this helps
Epilepsy Helpline Team
Hi
I am unable to log on to the live session as flash is not activated on our works network. However, I hope you can help me with a query...
I am currently suffering from stage 4 chronic kidney disease and have noticed that my nocturnal seizures are becoming more common and appear to be more severe. Is it possible that the CKD could be inducing the more frequent seizures, I believe that this may be the case due to all the waste left in my blood and possibly negating the increase in medication.
Many thanks
Andy
That sounds really frustrating. One way forward would be to request this formally from the PCT. You could then go through the appeals process as far as you can, explaining your circumstances. I’m afraid some of the more specialised health treatments are something of a lottery on the NHS.
30 minute seizures do sound concerning though. Have you had a review of your epilepsy? Maybe seeing another specialist would offer the possibility of seizure control in a way you could access. I do wish you luck whichever route you decide on.
If you’d like to discuss this further with an Epilepsy Adviser, please phone the Epilepsy Helpline freephone 0808 800 5050.
Cherry
Epilepsy Helpline Team
i am now 41. at 10yrs old i had a tumour removed. the scar tissue has hardened and 10 yrs ago i started having grand and petit mals. my grand mals can last up to 30mins and average about 10mins. i looked into this and there is an operation available to remove the tissue. one of my neurologists said it was in the u.s. only and wrote it of straight away (dr. tidswell. lancashire. ) my other dr. including my g.p. told me the op has a 87% chance of working but costs too much on the nhs. as i had to stop working, i lost my house and everything so as advised by my d.r. i can't raise the money to go private. is this common practise to deny me op as i have been told that 30mins fits are dangerous. any advise or help would be more than welcomed. i need to get back in life.
ty lee bibby
I have only recently joined having suffered a seizure recently ater 23 years , so had so many questions .I went on the online chat room and spoke to Cherry who was able to give so much helpful advice , I am very grateful for this service and will now become a member .
Many thanks
jenny