Epilepsy Medication...

A_Flock_Of_Sheep

A family member has been diagnosed with Epilepsy. They suffer Petit Mal, Complex Partial and Myoclonic Seizures.

They were prescribed a drug called Lamotrigine but on reading the side-effect list they refused to take it. There was a side-effect reported called Steven-Johnson Syndrome and Toxic Epidermal Necrolysis.

The person looked this up and the conditions are serious and potentially life-threatening.

Their GP then prescibed them Sodium Valproate. Again the same side effect was reported in the leaflet enclosed despite them asking the GP. Suffice to say these tablets were also returned to the Pharmacy and the GP had completely wasted their time.

Can any Epilepsy sufferers here tell me if there are any drugs to treat this that do not have this side effect reported. Currently the person will refuse any medication that carries this. Their opinion is that they were putting up with the seizures and would rather carry on like that than risk this dangerous side effect. I understand that it may be rare but they do not see it like that.

Can anyone tell me the ramifications of not taking medication for this condition?

System

One of the side effects of my meds is "sudden unexplained death" :eek:

dmg24

xXMessedUpXx wrote: »

One of the side effects of my meds is "sudden unexplained death" :eek:

Absolutely, if there is even the smallest chance it has to be stated. Doesn't mean that the benefits do not far outweigh the risks!

OP, before dismissing the meds your relative needs to ask more questions about how likely these risks are. I have taken lamotrigine before with no problems, but would not take sodium valproate due to the risks if I was to fall pregnant. Had I not wished to get pregnant, I would have taken it.

A_Flock_Of_Sheep

I googled for pictures of Toxic Epidermal Necrolysis and I am still in shock. I don't think I would fancy taking anything that can produce such an illness.

There must be more than 2 medicines available for Epilepsy? dmg24 do you have epilepsy and if so what do you take for it?

VfM4meplse

There are of course more than 2 meds for epilepsy, but unfortunately none of them are very nice. I have a great deal of sympathy with your family member, however the internet is a gateway to all things scary and may make it harder to come to terms with the diagnosis.

You should understand that every medication has side effects, both syndromes you have noted are rare for lamotrigine (1:1000-10,000 for S/J, even lower for toxic epidermal necrosis).

A_Flock_Of_Sheep wrote: »

Can anyone tell me the ramifications of not taking medication for this condition?

Regrettably, the impact of untreated epilepsy is so much higher, people still die as a direct or indirect consequence of uncontrolled epileptic episodes. Your family member has a complex combination of seizures that needs requires treatment, both their speciualist and GP is well aware of both the condition and the side-effects of the medication and would not suggest a treatment that on balance would cause more harm than benefit.

I would suggest that you allow your family member to take what has been prescribed. They should return to the specialist if a rash develops, or the convulsions persist.

A_Flock_Of_Sheep

VfM4meplse wrote: »

There are of course more than 2 meds for epilepsy, but unfortunately none of them are very nice. I have a great deal of sympathy with your family member, however the internet is a gateway to all things scary and may make it harder to come to terms with the diagnosis.

You should understand that every medication has side effects, both syndromes you have noted are rare for lamotrigine (1:1000-10,000 for S/J, even lower for toxic epidermal necrosis).



Regrettably, the impact of untreated epilepsy is so much higher, people still die as a direct or indirect consequence of uncontrolled epileptic episodes. Your family member has a complex combination of seizures that needs requires treatment, both their speciualist and GP is well aware of both the condition and the side-effects of the medication and would not suggest a treatment that on balance would cause more harm than benefit.

I would suggest that you allow your family member to take what has been prescribed. They should return to the specialist if a rash develops, or the convulsions persist.

Sorry, you misunderstand THEY have refused the two medications. it is not a case of me deciding for them.

I simply want to find out more from others with experience of Epilepsy and treatments.

VfM4meplse

A_Flock_Of_Sheep wrote: »

Sorry, you misunderstand THEY have refused the two medications. it is not a case of me deciding for them.

I realised this shortly after posting and edited accordingly! Sorry for being judgemental but I see so many people who can't make an informed decision because othey are unduly influenced.

A_Flock_Of_Sheep

VfM4meplse wrote: »

I realised this shortly after posting and edited accordingly! Sorry for being judgemental but I see so many people who can't make an informed decision because othey are unduly influenced.

LOL OK I understand.

Perhaps we should go back to the GP or write to them asking for a suitable medication that does not have this side-effect listed.

Jojo_the_Tightfisted

The necrolysis is most common with people taking penicillin. Do they refuse that as well?

They are of course aware of the likelihood of brain damage due to oxygen deprivation in the brain, injuries from falling or death from unmedicated epilepsy, I suppose?

They need to get themselves back to the GP and tell them that they have no intention of taking anything.

VfM4meplse

A_Flock_Of_Sheep wrote: »

Perhaps we should go back to the GP or write to them asking for a suitable medication that does not have this side-effect listed.

I really don't think this is a good idea, these side effects are not confined to just these 2 drugs. These concerns would be better discussed with the specialist in any case, but the chances are that your family member will tolerate the medication and benefit from it. Every day left untreated is another day of risk.

soolin

Is there a charitiable body who can offer specific advice that others on here might not be able to suggest due to MSE rules on no medical talk?

What I would say though is reading any leaflet on any drug will put you in shock, I once had to take a drug that was actually banned in several US states as being dangerous. We must all balance the risks so sometimes asking the GP for a referral to a specialist might be useful if only to help with deciding what level of risk with or without medication is acceptable.