What can I do for a friend with epilepsy?

I have a very good friend who has epilepsy.

Can anyone suggest how can I support her and make her life easier?

Be very supportive and be sure she is safe. Let her know you are there for her and that just because she has epilepsy doesn’t change your friendship. I have epilepsy for 40 years and did a good job of hiding it, not that I tried, just that I didn’t tell unless I had to. I main thing is to be there for her and learn as much as you can about epilepsy so you know a little about what she is going thru.

Hi Andorea!

    My name is Caroleena. I am 24 years old and I just wanted to share with you a little about my life with epilepsy = partial complex seizures; maybe this will help you support your friend  

   Imagine.... since I turned 1 year old, a high fever led me to the hospital and, next, the doctor diagnosed it as EPILEPSY. The tears fell from the eyes of my mom, dad, and everyone else  in my family. Throughout my life, I have been struggling with my disorder..... at school, with friends, etc. Back then, since 1982, we have tried medications, on and off >>> there was a time when I did not take any at all..... thankfully, many of my friends at school knew about it and suported me, that is they listened to me; and nothing blocked the friendships.

 

   What is the best advice that I can give you?

 When having this neurological disorder you, and MY PARENTS, are always scared>>> what if? what if? I lose my conscious NOW -- just 15 seconds can CHANGE MY LIFE -- even death -- and that of MY FAMILY entirely... My parents overprotected me due to this fear...

 

    I am sure that your friend will consider taking MEDICATIONS so that her seizures will be controlled..... That's why I wanted to tell you this..... It is very important that you give your friend SUPPORT but mainly HOPE --- there will be tough times. In my case, I have tried about 3 medications -- the problem is that you have to play with the dosage and its side-effects... I mean you start and things start going well for 2 months and then, SOMETHING BAD HAPPENS. Again, I need to go to the doctor. Next, the dosage is increased. Another two(2) months go by and another seizure occurs. Again, another visit to the doctor.... next, the dosage is increased again. Four(4) months go by and another SEIZURE occurs.... the dosage is increased but now, side-effects start appearing..... a year goes by and NOTHING, you are still the same or worse... You start getting excited that a MEDICATION is working for you but then, something happens and YOU LOSE HOPE >>>>> is there one that can help me? YOU, Andorea, can help her a lot!!

 

It is a trial-and-error period: Give her STRENGTH/SUPPORT and HOPE. In my case, it has taken 23 years (well because there were gaps between taking and not taking medications).....

 

   Two years ago, when my father DIED, I was under a medication -- by the name DEPAKOTE -- and even worse, with a very high dosage..... no control and several side-effects. My dad had a heart attack and FEAR arose... Where can I go? we even considered BRAIN SURGERY, but no>>>>> this is scary, something mini can go wrong and your life gets WORSE than it was BEFORE...... nothing more delicate than your BRAIN.....

 

   Where can I go? in my case, Dr. Alpert and LAMICTAL >>>>> a medication that has changed my life entirely = no seizures and no side-effects for the past year. I am excited and always praying that this will continue..... Tell her never to lose HOPE and that this is what she will have to go through -- maybe not so many years as me -- for her to have it under control...... Hence,

 

   YOU, as your friend, be by HER SIDE and giver her SUPPORT and HOPE >>>>> so that the ride can be a smoother one: always give her a hand, especially in the aftermaths of those 15-30 seconds of unconsciousness.

 

I hope I helped you... let me know if you want more advise @ [email protected]

 

Please pray for me that LAMICTAL keeps helping me>>>>>

 

   ***Edited for color***

Post Edited By Moderator (~Jennifer~) : 6/11/2006 1:47:33 PM (GMT-6)

I am 23-years-old and I myself have epilepsy; I have had it since I was 1-year-old as my parents have told me. I remember when I would have them either early in the morning around the time when I woke up or late at night so I had no need to tell a single soul about my condition. Now all of that has changed! I now have them whenever they decide to come and a lot of the time, it is without warning. I go to a specialist at John's Hopkins who treats me; he knows all about the seizures that I have and he tries to help them out. This is where you would come in if your friend would happen to have a seizure: The first thing that you would need to do is make sure that your friend is lying on the ground. The next step would be to make sure that nothing is around your friend; make sure that the area is absolutely cleared. Some objects that don't seem harmful can actually become harmful when somebody is having a seizure.
One more thing that I would like to make a note of is that people have called the ambulance out of panic I am taking it and I go to the hospital, but the hospital does not help me at all; they can't give me a pill and 'poof' my seizures are gone! Now, I also have to fill you in on the last time that I went to the hospital; I received a black eye and a brush burn on my back. The hospital could not wave a magic wand and those two injuries would be gone, now could they? NO! I had to go through a whole bunch of different medical stuff that I would have gone through at John's Hopkins plus other medical needs that I had no need for and my mother was charged a bundle; not only that, but I was in an uncomfortable bed with ntohing but a hospital gown on.
Unless your friend gets stitches from her seizure, which has also happened to me before, make sure that you do not call the hospital. You have to think and ask yourself, "How would the hospital help with this?" before you call!
Lastly, just like up above, people with epilepsy are everyday people; you don't really know that they have epilepsy until have a seizure. To let you know, when I was in high school, another girl had a seizure and everyone was asking her questions and giving her lots of attention. I tried to answer the questions that were being asked and everybody just said to me, "How would you know, Meghan? You have never had a seizure a day in your life!" When I tried to tell them that I have had seizures ever since I was one, they thought that I was just jealous of the attention that this one girl was getting! I didn't start to have seizures come at any time they wanted until I graduated from high school!
Some people have it worse than others and some have it pretty easy; I look at others with conditions like cerebral palsy and see them as normal because they can not help the fact that their muscles are not functioning correctly, the muscles that they suffer from are below the brain. Each and every one of us can succeed in what our goal/dream is if we try; now, for some people it will take longer, but if we really do try, we will succeed!

I have Epilepsy. However, I just got it in the last 2 years, I am 47 yrs old and have always been a very independant person. I have seizures very often and without warning. Medications are not working and surgery is in the near future. I used to have Auras, but not anymore. One of the most frustrating things for me is not being able to drive when all my life I have been able to. I have a wonderful husband who I work with a few days a week. I also have SLE and when in a flare can barely function. My family all lives far away, so they are no help at all. So, the best thing for you is to call your friend and see if she needs grocery's, a ride to get a hair cut, or go to the bank. Its the little everyday things that are what is what we need and sometimes hard to ask for. Especially if you are very independant. I feel like a burden to my husband and hate asking anyone for anything.

PeaceLilly
 

Post Edited (PeaceLilly) : 6/11/2006 1:45:03 PM (GMT-6)