We exist to improve the lives
of everyone affected by epilepsy

Comments and complaints

Epilepsy Action wants to provide the best service it can. To help us do this, we value your feedback and we are committed to using your comments to develop and improve the way we work.

We welcome comments, compliments and complaints.

Comments: read the 11 comments or add yours

Comments

i have epilepsy for more than 30 years. i was using DEPAKINE CHRONO
500 mg and Tegretol 200mg. these two medicines has affected my life totally, it affected almost all my organs except my heart and liver.
i got water in lungs ,feet.Bythese two medicines i got hepatitis A .
Now i have to Change to new medicine ( Lamyctal) and also see a new neurologist. I am asking whether these two medicines are really good
for eilepsy.

Submitted by reshma devi GOB... on

Hello Reshma
In the UK these medicines are not usually used together. We are aware that they can be good treatments for epilepsy if used separately though. Hopefully the new neurologist you are seeing will help you to find the best epilepsy medicine for you.

Karen
Epilepsy Action Helpline Team

Submitted by Karen, Epilepsy... on

Hello Reshma

In the UK these medicines are not usually used together. We are aware that they can be good treatments for epilepsy if used separately though. Hopefully the new neurologist you are seeing will help you to find the best epilepsy medicine for you.

Karen

Epilepsy Action Helpline Team

Submitted by Karen-Epilepsy ... on

Hello Reshma

In the UK these medicines are not usually used together. We are aware that they can be good treatments for epilepsy if used separately though. Hopefully the new neurologist you are seeing will help you to find the best epilepsy medicine for you.

Karen

Epilepsy Action Helpline Team

Submitted by Karen-Epilepsy ... on

Hello...

please guide me..

My little sister son's. He is 3 month old.He is suffered from ellipse and now
he are undergoing treatment of phenobarbital medicines by this medicines now he is absolute free of partially seizers but if he had been take this madicines long times what it's side effected in his life.

Please guide me.....

Submitted by jaswant singh on

Hi Jaswant

Thank you for your question.

Here is our information about epilepsy in babies.

It is normal to worry about the side-effects of epilepsy medicine. This has to be balanced against the baby having uncontrolled seizure as these are also dangerous.

Here is some information about the more serious side effects of phenobarbital. You need to look down the page a little for them.

The other long term side-effect listed separately is to do with bone health.

I hope this information is helpful for you.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by Cherry-Epilepsy... on

Dear Jaswant

 

Here is our information on epilepsy in babies.

 

I have found one article about the possible anti-seizure properties of camel milk. But this has not been studied in humans yet. So a lot more research would be needed before there was any clear evidence that it could be useful.

 

You may want to see if the doctor has an opinion on this.

 

I do hope things improve for your sister’s son soon.

Regards

 

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

The recent story about Sodium Valproate causing developmental difficulties and autism in children, if taken my their mothers when pregnant, is fascinating. Does this tendancy for Epilim to damage neurological function in developing brains extend into childhood, if it is the child who is epileptic?

Submitted by Graham on

Hi Graham

The particular risks being highlighted are about what happens with an unborn child when the mother is taking sodium valproate.

Sodium valproate is often prescribed for children. Sometimes it can have side effects. These usually go away when someone stops taking the medicine. If you have any concerns it would be worth talking these through with a doctor.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by Cherry-Epilepsy... on

Epilepsy or the Big E as I call it there is a bit of light. Both myself and my wife suffer from epilepsy it took my wife's sisters life my epilepsy is totally uncontrolled 30-40 seizure's a year but the stigma has changed. I let it get the better of me and attempted suicide 18 months ago after 27 years of fighting the feeling of shame and self hatred that comes with it . The fact I did not succeed made me look at life differently found part time work in a large supermarket and now see apart from fear at first the people who I work with do nothing but show care and wonderful support and even customer's who see me go into seizure on the shop floor will go out of there way next time they shop to give me encouragement it is wonderful the feeling of shame is fading there is a long way to go but people understand and except things even when in recovery mode far better I look at things far more positive now please never give up, things are only getting far better and remember the sun does shine after the storm of each seizure. The medication I take 3000mg Levetiracetam 200mg lamotrigine 1200mg tegretol 20mg clobazam daily have there draw backs but positive attitude around you by people is life changing

Submitted by michael flanagan on

Hi Michael,

Thank you for the excellent, positive story!

Rich - Epilepsy Action

Submitted by rich on

Contact Author

Epilepsy Action changes lives – thanks to people like you.

We would like to keep you up to date about our work and need your permission to do so.

What would you like to hear about?

How would you like to hear from us?

Please tick one or more options

The details you provide will only be used by Epilepsy Action and its trading company (or those working on our behalf). Epilepsy Action will never swap, share or sell your details.

For more information about how we use and protect your data visit epilepsy.org.uk/privacy

To update your preferences, please contact our supporter care team on 0113 210 8800 or visit epilepsy.org.uk/contact

CAPTCHA
This question is for testing whether you are a human visitor and to prevent automated spam submissions.