BS: Epilepsy

Subject: RE: BS: Epilepsy
From: Sorcha
Date: 06 Mar 04 - 03:39 PM

My sister is Grand Mal......don't know how long it has been since she has had a seizure but quite a while, I think. For a while, until they got the dosages set, she couldn't drive and she still is not allowed any occupation that could be dangerous, like a meat cutter. Other than that, I don't think she has experienced any prejudice at all because of it.

Subject: RE: BS: Epilepsy
From: Peace
Date: 06 Mar 04 - 02:58 PM

Dear Guest but a regular:

Your wife will need your support, and by the looks of it she has that already. When we find out that we have X, it throws us. She was shocked. Her reaction was understandable, but not good. Here are a few sites to get you both started. Bless you.


www.efa.org/

[e-mail]      You'll have to type this one in.

Subject: RE: BS: Epilepsy
From: Jeanie
Date: 06 Mar 04 - 01:04 PM

Guest, I was so sad to read of what you and your wife are going through following her diagnosis. I want you both to know that epilepsy is most definitely something you can live with and need not hamper your lives. In a community as large as Mudcat, I am sure there will be several members who have, or have had, epileptic seizures, in varying degrees and types.

I had my first fit when I was 11 years old, triggered by sitting very close to a flickering television screen. It was, indeed, a very scary experience, but the hospital handled it well. After an EEG check, it was found that the kind of tendancy to epilepsy I had was one which is triggered by lengthy exposure to fast flickering light, and nothing else. I was put on tablets for about 5 years and had no further fits, until my first night away from home at university, when I was 18, triggered by strobe lights at a disco. I had managed up until then to go to discos and just go outside if I started to feel dizzy if the strobe lights came on. (Try keeping a teenager away from a disco !) But this one was extra fast and kept on extra long (set up by some wizz-kid Physics student) and I collapsed running upstairs to get out. I hadn't judged how long I could stay. Silly me, I had just met a boy and wanted to stay dancing. Not the first or last time I have gone against my better judgement as regards the male of the species ;) This time, I wasn't put on any tablets, and just advised to "keep away from discos". Which I did. Went to the folk club...

I have had no incidents like that since (and I am now 50), but I am careful around certain situations (e.g. faulty neon strip lighting; fast spinning ceiling fans) just in case. I believe it is true for people who have any kind of epilepsy that they have some kind of warning when something is wrong. There is time to stop what you are doing. This can be a very reassuring thought. The tendancy I have is mild and very specific, so what applies to me and the way I live with it will clearly be different from anyone else. But, Guest, I just wanted you and your wife to hear from someone in person on Mudcat. I hope that there may be some others who will also add their thoughts and experiences.

The webpages listed above all look excellent. I do hope you will both find a great deal there to encourage you.

Please get in touch with me by PM, whenever you wish.

With Love,
- jeanie

Subject: RE: BS: Epilepsy
From: ranger1
Date: 06 Mar 04 - 12:11 PM

My niece has epilepsy due to brain damage from an unrelated illness when she was an infant. Her meds completely control it, and unless someone told you, you'd never know it. Epilepsy is a common effect from traumatic brain injuries and illnesses. I hope the hospital has someone on staff who can help your wife with the right meds and getting them adjusted for her. It can take a little time to fine tune them so they work right with her system,, so make sure that she knows that it's not that they don't work right, it's just an adjustment issue.

Subject: RE: BS: Epilepsy
From: RoyH (Burl)
Date: 06 Mar 04 - 12:07 PM

It's not shameful. The people who think so are themselves shameful. My grandson has it. He takes a small amount of medication daily and goes through life with ease. Cheer up Mrs 'Guest but a regular'. It was a shock to get that diagnosis I'm sure, but you can beat it. Good luck. Burl

Subject: RE: BS: Epilepsy
From: waterdragon
Date: 06 Mar 04 - 12:06 PM

Please tell your wife she has nothing to fear or worse be ashamed about . I suffer from Epilepsy and have been living with it for the last 26 years .My grandmother suffered,I have two sisters and a nephew who also suffer.We are all,as the guest above so rightly says,sane (most of the time!),intelligent and productive people who occasionally fall over . The condition is more greatly understood these days and can be well controlled ,so please pass on our reassurances.

It is not,as some people think,a mental illness.I also know from experience that excess alcohol can bring on a fit.

The best advice I can offer is be there for her if she has a convulsive attack,keep her out of the way of anything with which she could injure herself and comfort her when she comes round.The worst thing about the aftermath of an epileptic fit is the person who suffers it has no idea what has gone on, other than the panic on the surrounding people's faces.
Believe me , it's more scary for the people who are around you than for you youself.

It may take time for the condition to become controlled but once the medication is suited to the patient there is no reason why your wife cannot live the same kind of life as she did before the diagnosis.

I hope this reassures both of you.Good luck and I hope it all works out well.

Subject: RE: BS: Epilepsy
From: GUEST,Ely
Date: 06 Mar 04 - 10:48 AM

My cousin has it (as a result of a horseback riding accident). Whatever the medication is that she is on seems to be controlling her seizures well. On the whole, epilepsy doesn't seem to interfere much with her life--she worked full-time for a publishing company, on her own as a photographer, and now has a two-year-old and a new baby.

I cannot imagine why anyone would think this is shameful--it's definitely NOT a mental illness. My cousin is a perfectly normal, sane, intelligent, productive person in every respect. But, yes, I agree with Jeri--since your wife seems to be having a hard time with it, a support group (in addition to yourself) might be helpful.

Subject: RE: BS: Epilepsy
From: Bee-dubya-ell
Date: 06 Mar 04 - 10:11 AM

My father developed epilepsy after contracting mumps as an adult in the mid-sixties. (Mumps is usually considered a "childhood disease" like chicken pox, but, in adults, it can devlop into a form of encephalitis.) Up until about ten years ago, the available medications controlled, but did not eliminate his seizures. Even with the meds he would have one or two seizures during a typical year. But, newer drugs became available about ten years ago and he has not had a seizure since having had his prescription changed. The new stuff works very well.

Subject: RE: BS: Epilepsy
From: Jeri
Date: 06 Mar 04 - 08:12 AM

Here's a list of links for information/support groups. She'd probably feel better if she could talk with other people with epilepsy, whether on line or in real life. Ask at the hospital if there's a support group. Try doing a google search for [name of country] epilepsy support.

Opinion follows
Personally, I have NEVER understood the shame factor. It's not a mental illness, it's not something the person who suffers from it can do anything about. A 'mild case' should be a small thing, but for the reactions of others and the fear of others' reactions. These may be helped if she explains the nature of epilepsy to people closest to her. The stigma is perpetuated because people don't talk about it. She may not be up to that right now, and it may take a while for her to believe she doesn't have a 'mental illness'.

Right now, the shock of the diagnosis is the problem, not the epilepsy. Probably the best thing for her now is your support, and it sounds like she certainly has that.

Subject: RE: BS: Epilepsy
From: Rasener
Date: 06 Mar 04 - 05:40 AM

Sorry didn't do the link. here it is.

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

Subject: RE: BS: Epilepsy
From: Rasener
Date: 06 Mar 04 - 05:38 AM

Hi.
I don't know much about epilepsy, but I don't know why you or your wife should feel ashamed. Anybody can get it, and from what I understand, it can be controlled through medication.

In my youth, I used to go out with a girl, and it was only later after we had broken up, that she told me that she suffered with epilepsy. I woudn't have known. She had some form of medication that controlled it.

Phsychiatric help surely doesn't come into it. Surely it is more about finding people who can help in a positive way.
I have an autistic daughter, and I suppose you could say that she was nuts. In actual fact she is lovely, and in the UK there is so much help around.

Maybe you should move to the UK.

Anyway have a lok at this website, I am sure you will find it very informative.

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

Keep your heads up.

Subject: BS: Epilepsy
From: GUEST,Guest but a regular
Date: 06 Mar 04 - 04:33 AM

Do any catters out there have experience with epilepsy?

My wife has just been diagnosed as having a mild form, but in the culture and country we live even this is seen as something shameful as it is considered a mental illness.

We spoke about it and the doctor we saw was sympathetic and I thought that my wife had understood and we could then look to how we go through this together.

But last night after I returned home from a session I found her collapsed on the bed and in a very serious condition. She had drunk a whole bottle of very strong spirit. She never normally touches alchohol. Luckily I got her to a hospital and the doctors and nurses were able to bring her back.

I need to understand and get her to understand that this can be lived with. Local phsychiatric help is not an option as it is almost non existant in this country.