epilepsy questions and queries

[colinthecaterpillars]

I have put this in heath but got no replies maybe get some here
my 19 year old son has just been told he has epilepsy and is on medication now for it,I don't know anyone irl who has it to talk to about it.does anyone know of signs to look for or even gadgets or devices that might work to look for signs of a attack.or generally just some advice on it.
the paramedics asked if our dog spotted anything but she was to busy snoring her head off when it happened,has anybodies dog helped in these situations?

Dear Niece has an epilepsy dog that will notice about 1 minute before an episode and lead her to a safe spot and/or alert family members to impending episode. From very little experience, alerts are different for different people. DN goes into a daze right before one hits, a friend had no warning just dropped and another acquaintance would start to have vision go right before. Try to watch him and ask if he noticed anything right before - it can be smells, sounds, physical feelings, almost anything but is somewhat consistent to the individual from what little I have seen.
Good luck to you and DS.

My brother was diagnosed with epilepsy at 15. I'd say it's not uncommon to not ever know the triggers for a seizure, and luckily his seizures are controlled by medication. However, I would recommend getting your son (and you) in contact with a support group - my brother has never really come to grips with the diagnosis, and it took him YEARS to take his meds properly, which resulted in far more seizures than he should have had, which then had knock-on effects for his health. The epilepsy society and epilepsy action both provide advice and support.

He says he has no signs at all but 2 have while he was asleep,I will get in touch with a support group.
He due back at uni in September so want everything to be As well as it can be for his return

I’m epileptic. I rarely get any signs of a seizure before they happen. For me it’s knowing that stress and especially emotional stress increases my likelihood of having a seizure, and it’s in the period of calm after the stress that I have a seizure, so I am more careful at this time.

I also suffer from absences and these increase before a full seizure (which gives me a warning to slow down)

It took a while to get the right dose of medication but I am now very well controlled by lamotrigine

Hi OP my 9year old DS had his first seizure in March - whilst he was asleep - so far all his seizures have been like that - they are still tweaking his meds as he isn't stable yet - as he is asleep there is no warning - we have a monitor in his room so as soon as he starts we can get to him. All very stressful - I also recommend getting in touch with one of the Epilespy groups - I have found them very useful. The key is taking the meds correctly and also finding the right meds that work for the patient. As I said we are not there yet but seeing the Consultant next month so see what she decides. Good luck to you an your son.

DD has all seizure types. The only time she gets an aura, is when a drop attack is coming. I don't know what she experiences, but she usually starts crying with fear - that she is going to get hurt.

My advice on epilepsy is to get DC to live well to minimise seizures - eat regular, balanced meals; go to bed on time; not drink too much alcohol; take the right medication on time; be reasonably active and keep stress down! Being hungry, tired, stressed can increase the risk of a seizure! We have found as well as those mentioned; being too hot or cold, in pain, bored, inactive, talking about epilepsy itself, changes in an emotional state (like getting very excited), artificial sweeteners and lots of dye in foods can trigger seizures, but those may be an individual thing.

As for equipment, I know of, but we don't use all of these, as it depends on how many seizures there are and when:

1. auditory monitors at night (if there are a lot of nocturnal seizures)
2. anti-suffocation pillows
3. shower chairs - in case of drop attacks in the shower
4. mattress alarms (although their usefulness is questionable; it depends on the type of seizures, because they are not going to identify absences for instance)
5. GPS tracker - if they are likely to go out for a walk, have a seizure and be lying unconscious somewhere for several hours
6. watch alarms for medication reminders
7. use of smart phones for reminders of appointments, etc - epilepsy and the drugs can affect memory. Epilepsy Action do an excellent leaflet on memory problems and how to get round them.
8. kettle tippers - to avoid getting burnt, if DC has a seizure while pouring a kettle
9. mini choppers instead of sharp knives in the kitchen

10. carpets rather than hard floors 11. a shower curtain rather than glass (and avoid glass where possible in the house) 12. use lifts if possible, although stairs can't be avoided 13. Medic alert necklace or bracelet - something to identify DC has epilepsy for paramedics and the police, as people with epilepsy can appear to be drunk 14. head protection in dangerous sports, as people with epilepsy can ill afford to get a head injury

There is a device being trialled, like a watch, which I think detects changes in the heart rate and warns of a seizure, but I have only read about them on the internet. I have never seen one; although I did ask about it for DD.

Other advice:

1. stay behind the yellow lines on train platforms
2. be supervised in water - let a life guard know at a swimming pool for instance
3. keep a seizure diary to try to identify triggers. Consultants always seem to want to know how many seizures and what types, patients are having.

We don't have a dog, but I have heard other parents say their dog knows a seizure is coming. DH thinks DD smells of pear drops, when she has a seizure, but my sense of smell is not very good and I can't smell it.

I have Epilepsy- mostly nocturnal but I have had a few in the day time

I take 400mg carbamazepine which seems to help but does have unpleasant side effects, tiredness, affects vitamin D absorption

I do not have any ‘triggers’ but myself & parents have guessed Stress as one but I’m
Not 100%

I have had 2 fits whilst outside on my own - once on a bus - an ambulance was called
Second out in my back garden smoking & I did Injur myself but am absolutely fine, however 90% on my fits are in my sleep so I’m quite lucky that way.

I went to uni away from my parents, totally on my own & was absolutely fine. My uni GP was brilliant & very easy to get an appointment,

Is his epilepsy photo sensitive?

Feel free to ask any questions at all. I’d be happy to help

Also, does he have a disabled travel card? If not make sure you apply.

My brother has epilepsy following a head injury 20 years ago. His seizures are mainly triggered off by not sleeping well the night before.

Two things I would suggest are -

1. making sure that his GP refers him to an epilepsy nurse - this might be at a different practice but seeing the same group of staff rather than a locum GP every time he has a problem really helps him feel like his condition is managed properly. 2). Really research the side effects of any medication that he may be prescribed. My brother was on meds for 10 years that caused his bones to thin. My fit, healthy, strapping brother is now a 44 year old man with severe osteoporosis; he has shrunk by four inches, has a dowagers hump, and compound fractures in his spine that means he is in constant pain - he says this is worse than the seizures. It also means that he breaks bones easily when he has an episode - he has no aura and just drops - wrists, cheekbones, jaw, nose etc have all been broken several times.

I don't want this to scare you - care has come on a lot in the last 20 years. Make sure he has an epilepsy nurse and ask lots and lots of questions.

thank you for all your advise there is a lot there I'd never think of even thinking of
its all fairly new his attacks in the past 2 weeks it's all happened.I've heard of these watches but are a thousand pounds. I'm not sure if it's photo sensitive he does say after his attack he is very sensitive to light and is doing a Web design course at uni so a lot of screen watching.

DD is very sensitive to noise after a tonic clonic - she is sensitive to loud or high pitched noise anyway, but its even worse after one, so that she cannot bear the sound of us putting the crockery away in the kitchen!