hi there again, i was just wondering if being or getting on meds helped you to feel more secure in life and live life?

i am 46 and have photo sensitive s's, but have not had one in ten years now because i know how to the extreme to avoid them!

that is thee only cause of them that ihave, not any othertypes only from the strobe effects.

of course i have paid such a price for it all too. it is called a lost life.

this evening i wanted to go to the cell phone store because my cell is still not working right.

i had to literally come back home and wait till sunset to go.

i told my husband i am moving to seattle where it is raining and cloudy all the time so i can feel that i can live a normal productive life to myself and to society as well.

i have not been on meds for 22 years now, and dr. and i agreed as long as i knew how to be safe that i did not need them.

today i was thinking that even if i was on meds i would probably not even then have a peace of mind, i would still be so afraid to go out and live my life.

not feelng safe on meds, then why bother.? i don't know of anyone who has only strobe light s's.

is there anyone here who has strickly strobe light s's?

if not or if so, please someone tell me if getting on meds has given you any peace of mind!

my dr. offered me depakote 500 mgs daily in two doses but i don't want to take depakote because of the weight gain and hair loss, and i don't want to take meds twice a day.

i already take thyroid meds, allergy meds, and hormone replacemnt, the last thing i need is two more pills twice a day to add to my regime.

any advice? please! i'm so tired of lving in this hell hole of mine.

but like i said..if i had even been on meds, and i knew i was safe, i wouuld not of went ahead to the store anyway, so would there be any point in taking meds if the fear still lingers and controls?

The meds do not give me peace of mind, but they give me hope. I haven't found out what triggers my DD's seizures yet and her seizures are not under control yet but I know the meds have helped some. So I will just stick with HOPE. Take care, and hope you find the answers you are looking for!

Lindy

I agree Hope defiantly! My E journey started two years ago and I just now have started getting control of them. I average ten days right now inbetween my seizures. My family thinks I'm nuts because I'm so excited about that. I tell them, try having them every other day, ten days feels like a month to me. I have started to venture out in the world again. I went on a field trip with my daughter a couple of weeks ago, a party last weekend (I even drank a Jack Daniels lemonade) Slowly that hope might even change into reality at some point!!

Don't stop living...... to much to enjoy!

Good luck
Lisa

Hi dear!

I don't feel secure on meds at all. I agree with the previous post, it gives me hope. These meds that I am on may not help all the way now but there is something out there that will. I am on the road to recovery and not on the road that goes spiraling downhill. I know you are upset about the amount of pills that you are taking but if you add just one more set it woun't be that bad...if it helps you. I was just telling my husband about that last night. I told him that I am 32 and take 4 different kinds of pills. I should be 73 and take them. My 97 year old grandmother doesn't take the ammount of pills that I do. He told me that if these pills HELP me then why should I complain? I complained about the seizures and now I am complaining about the meds that are helping them to go away. What do I want?? A mirical?? He is right! I should be glad that my seizures have been reduced to one a week rather than three or four a week. Sometimes I will go ten days and feel like the Queen of England!

I say if it helps then why not try it.

I hope it gets better for you and you can find your life again because it is beautiful out there and NO ONE should miss it!

God Bless,
KittyMom

------------------
Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

i dont think you are living a healthy life. you let seizures take control over you. your living in fear, have u seeked help getting over this fear? I feel so bad for you. can u talk to a therapist who can get u out of your house? my heart goes out to you. I have all sorts of epilepsy, i must for sure wear dark sunglasses, the sun isnt good for me either. I think thats why i was having so many seizures in the afternoon. the doctors raised my depakote and i am seizure free(knock on wood) . i havent lost hair, or gained weight on depakote. when i feel the food cravings I drink water to fill my stomich. but really i dont have the food cravings. You can do it, please let me hear back from you that you are getting the help you need so u can live a quality life, you deserve it. ((((((((((((()))))))))

Hi,
The only reason I take my meds is because the neuro said,"if you don't take the tablets,you'll never drive again".I am now 49,and I was undiagnosed as a child.I have complex partials,and survived up until me being treated at 45...without drug therapy (but not without siezures).I have worked all my life up until being diagnosed.Yes I found it extremely hard to finish my apprenticeship in engineering,but I managed somehow (and yet they reckon certain anticonvulsants help memory,so I may have done better on them).So it's Academic whether my drugs work or not (I am,better controled on meds),If I want to drive again I take the meds.
People who are photosensitive,can sometimes manage to some degree by avoiding what triggers their siezures by the use of tinted glasses for everyday use,watching the T.V,in a well lit room,sitting at least 2.5 metres away,using a 100hz screen,etc.You have to weigh up the pro's and con's,of siezure control,and side effects.I read somewhere that taking the meds,stopped some of the damage to the brain caused by siezure activity.Whether this is true or not I can't say.But if it was true,then taking the meds would give me some peace of mind.I was told my left temporal lobe was at fault,but yet light flickering through tree's,or riding a bike past railings,can set me off (and yet it's the occipital lobe that controls vision).
Anyway no one but you can decide what to do,sorry if I have not given you any answers,I am only giving you my perspective on it.But you have to be congratulated on going ten years siezure free...well done.
Take care
Garry