Epilepsy

Caz · 06-08-2003, 21:19

Anyone any information about this?
I have close relative diagnosed 18 months ago with the problem.  Not yet stabilised. Any advice, information or comments on the subject extremely welcome. How they cope, peoples prejudices etc.

Mick · 06-08-2003, 21:23

A friend of mine has this the doctors diagnosed heart trouble .
took ages before they got it right .
she lives quite a normal life with little problems .

Caz · 06-08-2003, 21:29

Was a problem getting a diagnosis in the first place. the doctor didn't seem to believe he was having seizures. Had to take family members to the surgery to convince him, before he got to see a consultant.
He was later diagnosed with frontal lobe epilepsy.

Mik Dickinson · 07-09-2003, 08:15

My daughter has a simuliar thing.She faints when seeing flashing lights and getting herself really worked up.Was terrifying the first time it happenned.She had a total muscle relapse and peed and crapped her pants.She was not the only one as i did too.Spoecialists could find nothing.Now at the age of 9 she realise when something is coming on as she gets headaches before hand and we can act on it accordingly.

littlemo · 07-09-2003, 12:25

usually first thing in the morning when rising out of bed is a time when the first episode will occur, sometimes can be mistaken for sleep walking if it occurs during the night

ANNE · 07-09-2003, 14:46

When someone haveing a fit there are usually tell tale signs that one is imminant.
Just make sure there is nothing close by that they can harm themselves on.
Dont attempt to put anything in the mouth. They will soon come out of it and are just a little disoreantated when comeing out of the seizure.
Keep talking to them through out.

Caz · 07-09-2003, 14:53

It's actually my son who has the epilepsy. He has major seizures, but also absences to varying degrees. These can last from a minute or so, to about half an hour. sometimes he is just sat down and goes into a sort of trance, and others he will be moving around, doing silly repetitive actions, and remembers nothing obviously.
A lot of these absences seem to occur when he is eating, or if not, he still starts to make chewing motions as he is going into one.
Apparently they no longer call the seizures Grand Mal & Petit Mal, is that right? Would make sense as there are so many different kinds of seizure.
To me the absences are just as worrying as the major seizures. Everyone knows what one of those is, and people are slowly becoming more informed about the subject. But these absences have led to various incidents while he has been out, because people don't understand what is happening.

lettie · 07-09-2003, 21:08

Many people have a combination of absences and seizures. It is usual to try and control the condition with medication, but it usually takes time to find the right drugs effective for that particular person and some of the drugs need to be screened for in the blood every few months to ensure the lavels aren't too high. Seizures are usually characterised in 4 phases
1) Aura - the person will have a feeling, smell something or a certain taste in their mouth which will preceed a seizure,
2)Tonic - Rapid jerky movement of all muscles including facial spasms, will usually fall or bang limbs in this phase, move any solid furniture or surround with cushions in this phase.
3) Clonic - Jerking stops but sufferer becomes stiff and rigid may have bitten tongue during previous phase, keep cushioned and try to roll onto side,
4) Coma - A period of recovery, the muscles relax, may be incontinent, put in recovery position and wait.

Absences are more dangerous, as they are harder to diagnose and may cause problems driving etc.

Status Epilepticus.. The most dangerous, a prolonged seizure with tonic/clonic activity but no Coma phase. Sufferers frequently stop breathing during tonic /clonic and breathing resumes during coma. Acute medical emergency, dial 999.

Hope this has been helpful, Status Epilepticus quite rare, have seen it only once in 16 years of working in the health service.

Caz · 07-09-2003, 21:21

Thanks lettie!
It had got to the point where I was going to video these absences, to prove what is happening to my son, because the GP didn't seem to want to believe he was epileptic, even though we had seen him have the major seizures, had to fight to see a specialist. since then he has had scans and been diagnosed with frontal lobe epilepsy. He has been diagnosed now for 18 months and has had his medication raised, but the condition is still not under control properly. Waiting now to go back to the specialist, but it's such a long time between appointments.

People see him walking about apparently healthy, and think he is a skiver! &gt;

 &gt;

As things are at the moment no one will take him in his line of work until he is stabilised.

lettie · 07-09-2003, 21:27

It is difficult sometimes to treat and can take ages to find the right combination of treatments because everybody reacts differently to the medication. Once stabilised he will be able to resume near normal activity. My ex brother in law was extremely unstable in his 20's because he didn't take his tablets and drank a lot of alcohol. He used to have 4 or 5 full blown seizures a week and numerous absences. He is very stable now and works full time, plays footie at the weekend etc. ;D

malibu · 22-09-2003, 11:36

Hi
I have just found this site and noticed your request if you are still after some information there are some great sites on the web

http://www.epilepsy.org.uk/
http://www.epilepsynse.org.uk/

Hope this is on some help

katie

Caz · 22-09-2003, 13:44

Thanks Malibu.

Have already checked out these sites, and tons of others. Also read every book I can find.

What I was really after was some personal input from from people living with the condition, or who have relatives with epilepsy. How they cope & people's attitude to it.

Thanks again.  

malibu · 22-09-2003, 15:13

Your very welcome Cazzer.

I am glad you have seen them already as it has been a while I noticed since you posted original message

Hope you got all the information you wanted from people.

redbrickbathinyard · 27-08-2011, 21:04

Having had my first experience of seeing a young man having a epileptic seizure , i must admit it was very very scarry, as i have never seen it before.
He had fallen in the middle of the road having a seizure, i was driving on the opposite side of the road coming towards him, i could hardly believe as cars just drove around him starring out their car windows and people just carried on with their business......i jumped out my car and ran over to him, he seemed to just be coming out of his seizure and very tierd and dazed, i just cuddled him and talked to him, asking if he needed a ambulance, or taking home. He seemed very embarrassed and thanked me and just wanted to go on with his business.......but for me i was devastated, i was so upset for him, i am still crying 2 days later. I know he deals with the seizures probably on a daily basis,and just gets on with them... but as i have never seen this before i felt so upset.
I don't know this young man, but he was amazing, so calm and together, i was like a nervous wreck.....i suppose i have led a very very sheltered life, in my own little world, but this young man has truely opened my eyes to life....He was inspirational, truely the most amazing young man i have ever met.... i am now trying to learn more about epilepsy and hopefully soon maybe i can do some volunteer work.

heth · 27-08-2011, 21:29

Even though it was very distressing for you something good has come out of the situation as you will soon be helping other people who have epilepsy through volunteer work.
This will be very rewarding for you.

It is horrible seeing people have a fit, my Grandma has developed Epilepsy and the first time I saw her having a fit I cried. My grandma came round and wondered what all the fuss was about!

I have been told that when people have the fits they cannot feel anything and its much worse for people around then the actual person having the fit.