Seizure

[Truchazul]

Ds had a seizure in his car on December 24 last year.....(he is 21)...got the dreaded call from the hospital, they didnt really give me any information about what had actually happened and his Dad and I rushed in thinking that he had crashed the car and injured himself.....fortunately he had somehow managed to stop the car and passersby had called an ambulance and the police......the ambulance notes were vague and I think he had probably been in recovery by the time they got to the scene.....the hospital discharged him after doing a Cat scan and bloods and although it was a shock, we hadnt seen the seizure and I thought it might have been some sort of faint.....we saw a Consultant and he had an EEG and an MRI which both came back fine....the Consultant told us that it was probably a one off due to exhaustion etc.... last Saturday morning I was in bed with my morning coffee and heard an almighty crashed from my Ds's bedroom and when I got no answer from him I went in to find him on the floor having a massive tonic clinic seizure....he had cracked his nose and forehead which were bleeding and he also had blood coming from his mouth....my husband wasn't home and I had left my phone in my bedroom....I managed to maneuver him into a semi recovery position but at one point he definitely stopped breathing and was blue in the face......it was the single most terrifying thing I have ever experienced in my life and will haunt me forever.....I literally screamed the house down....fortunately the neighbours heard me and called the police and ambulance etc.....Ds spent a week in hospital having all the same tests done again and all have come back fine.....however the Consultant now says that it is definitely epilepsy. Following a lot of discussions with Ds we have found out that he was consuming a very large amount of Energy Drinks....Red Bull, Monster etc.....on top of drinking coffee.....he plays football, has a full time job and is 21 years old so he doesn't get a whole lot of sleep, hence the energy drink and coffee consumption....the Consultant didnt place any real importance on this....and has started him on Keppra to control his seizures....the whole family is devastated by what has happened, I'm a nervous wreck and Ds is deeply depressed because he can't drive for a year and he feels literally that life is not worth living...he is being a real handful to say the least.....I was wondering if anybody else has had issues with energy drinks and/or caffeine intake causing seizures......?

I don't have any experience with caffeine as my child developed epilepsy as an infant. But I can sympathise with how utterly terrifying it is to see your child having a tonic clonic seizure. It's a huge shock but I'd recommend speaking to your son's doctor or your local epilepsy nurse if you can. I found it very helpful to have them talk through a care plan for managing any future seizures so that I felt more prepared in the moment. My child's seizures have been very well controlled on Keppra though so we've rarely needed to follow their advice.

I'm not a doctor but agree with you that it feels possible the caffeine played a part. Our consultant explained it to me as someone with epilepsy has a lower seizure threshold than the rest of us but anything that stresses the brain can contribute to a seizure eg being tired, stressed, unwell, overwhelmed. Caffeine probably stresses the brain in some way. Once your son has found the right balance of medication though this should raise his seizure threshold so that these stressors dont cause a seizure.

I hope the medication helps your son to get back to his normal life very soon x

Thank you so much for your kind words...Yes it was a dreadful experience.
We live in Spain and are lucky to have private insurance which has meant that Ds had all the tests done very quickly......unfortunately the Consultant was quite dismissive of our theory regarding the caffeine and energy drink and rushed us through the appointment....we were not given any information regarding specialized epilepsy clinics or nurses etc. I am sure they exist and I suppose I will have to do the research.
Ds is a normal young adult and is very sporty...he doesn't smoke and drinks very little alcohol, he has been incredibly healthy his whole life.....We are just trying to find a reason behind these seizures before accepting a definitive diagnosis of epilepsy which the doctors seem to want to push on us.....we have discovered through tesearching it over the last week, that caffeine is incredibly toxic and can actually kill you.....

Sorry to hear the doctor was so dismissive of your concerns. I certainly asked about far less plausible triggers than caffeine over the years but was always given a well considered response. Would your insurance cover a referral for a second opinion if you shared your concerns about the diagnosis?

I hope there is some ongoing support available out there for your son. It's such a big diagnosis to drop on him and expect him to just get on with it!