difficulty accepting epilepsy - diagnosis later in life

[BlueSkies2220]

crazychick -
I know that you and i are not on the same medication, but here goes-

My tegretol makes me very tired. i have to take it because if I dont, i will start getting moody, ups and downs with moods, angry at times, until finally i seize. It would take a good month or so for me to get back into that pattern, and for me, i would rather take my med than have to go through that. i take a small dose, 100mg which actually works for me.

If you could downgrade your dose so that it still works for you, and still has the same effect, it might be helpful. or if you could get a different medication that would be better alltogether.. the problem is that you have to get used to it, and also - i dont know any AED that does not have side effects.

Its not just about putting up with it - its about finding solutions to make life liveable again!

What i do with my tiredness is drink coffee - things with caffeine, or those energy shots - too much and it would override my medication. just enough and i am able to function. i drink a pot of coffee every day and for some people that would be an overload, but for me, it keeps me going. i also take a nap during the day for a few hours, wake up feeling rested.

BUT - i still have memory problems. its so bad for me that i will get up out of my chair, walk across the room to get someting and forget what i was going to get! I also forget names of people ive known for years, or forget names of certain things. my husband helps me with it, and he knows how i make up nicknames for things or keep describing something by its characteristics until the name hits me. Without my medication, I have trouble speaking and i stamer and stutter but with my meds, i can finaly SPEAK normally. Happens often but ive found ways of dealing with it.

there are more natural ways of getting energy back. there are suppliments like COq10, B vitamins, folic acid and biotin, Fish oil [supposedly helps with depression], vitamin D, etc. The kinds of things that help with the brain, the blood, and how your body is able to convert food into energy. When you find that right combination of supplements and you take them daily, its a boost.

Speaking of boost - there are drinks out there that are made just for nutritional purposes, like boost, ensure, carnation instant breakfast, etc. you can find them at the grocery store. Usually they are packed with vitamins or other benefits that could help you to get your nutrition back in shape. and if you have trouble eating they make a great substitute when you cant hold food down. I drink these types of drinks often because they help me to get the vitamins and minerals that my body craves.

I also find that having a hobby is a good way of relieving stress. If you could pour your time and attention into something creative, it feels so good and it gets your brain going in certain ways. You have to exercise your mind - use it or loose it, as they say. The more you do that, the better off you will be and in time, your brain actually regenerates itself by creating NEW neural pathways {at least thats what ive heard} - its amazing!!

 

[crazychick]

am waiting for my neuroligist to geyt back to m with an appointment about changing my meds. my doc reccomended this morning reducing my dose until i speak to my neuroligist. i was told not to nap during the day as this can statr a seizure off and if i do sleep durin day i wont sleep at night and ill feel worse for it. av tried loadsa different vitamins etc and nothing is working been trying loadsa stuff since march now.

 

[corsetine]

i was diagnosed when i was 17, i am 25 now and am only just dealing with it because i want my driving lisc. when i was 17 i had 2/3 grand mals at the beginning of the year , tried valproate and took myself off it because it didnt suit me and then by the end of the year i was pregnant with my first kid but i had an easy pregnancy and was pretty relaxed with it all. then had another fit about 2 years later because i was so depressed and stressed about money. then i was fit free until 2010 due to stress. so i thought id better get my act together for my drivers but i am stubborn , i cringe at the word epilepsy / fit and refer it to " that thing" / "curse". i still go on rollercoasters , get piercings and have had an absurd amount of drinking consumed in my time , i find it to be a jagged pill to swallow basically because people think that im stupid or i feel restrictive and determined to feel normal and that i should have the same opportunities as everyone else .

 

[crazychick]

i dont like the word "epilepsy" and i am finding it hard to deal with, its the side affects of the meds that are hitting me more, the hair loss n feeling down 24/7 i have odd moments were am happy then i see my strands of hair falling out and wanna scream, it used to be so thick now its so thin its really scary, i went to docs explaioning side affects it took 3 attempts of telling three different doctors that these meds arent for me, they vkept fobbing me off with its stress, hair loss isnt a side affect of keppra is what they told me, i said it is and i want to change my meds, my doc finally agreed i need to change my meds but i cant get an appointment any earlier than december even though the way the tablets are masking me feel. i wanna feel normal to and be the have same opportunities as every1 else. its just not fair is it? my neuroligist and doctor just do not seem to care.

 

[Blue Cat]

It took a few sz's for me to accept that I had "e", hence I joined the forum to sort of help me be comfortable, it that's possible, with the idea of it. I like the way my doc put it. My brain has the potential for sz activity. I haven't had the hair problem - there's another thread on here about that which you might want to check out. Best of luck to you.

 

[crazychick]

whats the thread about the hair problem?

 

[car05161967]

I was diagnosed as an infant. I am now 44. It is still hard to come to terms with.

That was especially the case, when I had a tonic-clonic seizure in bed, in 1995 and, my (ex)wife(1992-2000) just stared at me like she was watching television or, a movie. She was in denial about her own health. She, and her parents didn't admit until 2004, when we(3mos. age difference ex-wife n' I) were 37, that she was developmentally disabled.

Then my (ex)fiance who had far more severe problems(childhood physical and sexual abuse) than my ex-wife, was calm, cool, and collected when I had a seizure. She didn't freak on me. Yet, She was emotionally abusive 'diagnosing' me, when she was not a clinician.

So it has felt like, I will never be 100% acceptable to anyone.

 

[crazychick]

Caro i know how u feel about not been accwptable to anyone. I feel like a freak now. I havent actualy been diagnosed with epilepsy. So i dont know what to think. Im here if ya need any advive or anythin i will try my best to help you.

 

[BlueSkies2220]

You are acceptable to us, and we are real people here on the other side of your computer screen. Once you begin the journey of loving and accepting yourself for all of your talents, skills and abilities, and your faults - the whole person inside - you wont have to seek approval from others and your life wont be spent in disappointment feeling sorry for yourself because of how people will treat you once they know the truth. You wont b defined by *their ignorance*

 

[crazychick]

thanx blueskies that means a lot. some friends wont talk to me anymore or meet up because of the e word :-(

 

[BlueSkies2220]

...Then you shouldn't call them friends. A real friend will accept you for who you are, love you and be by your side, guide you when you need help, and care about you.

The friends that I have in life, i can count on one hand.

In my time, i have found that it helps me to 'weed' people out of my garden of life by discussing my epilepsy...and by discussing my religious path [LHP/paganism!] and things like that. People react to it differently. They are afraid or scared or they don't understand and so they no longer deserve my friendship, because I know that i can't count on that person to really care about me.

That in itself is empowering.. and because i have embraced it without fear and regret, it has made me stronger.

So take some time to weed that garden and get those 'toxic' people out of your life. You will love yourself for it if you do...and nothing feels better than that.

 

[crazychick]

I mite have 2 friends that actually still my friends and havent treat me any differently. But the rest wont meet up or even reply to my trxts.

 

[gigi]

ego

I guess in a way it's egotism - thinking I'm better than this sort of thing - or don't deserve it. But it's just a part of life.
Perhaps God sees us as individuals strong enough to tolerate a disease that has to have a place in humanity.
=====================
I went back and read your original dialogue. This part stuck out in my mind, about ego, and our perception of ourselves and how we think others see us.

We want to be thought of as these perfect beings who are loved by family and surrounded by good friends. When the cat is out of the bag and our defects are glaring then our ego suffers, then we think we are not lovable. Especially with this disorder, I perceive myself as a good person, and yet this disorder makes me feel weak, dirty, insecure with a inferiority complex to boot. When I had an "episode" recently at the place where I exercise, all of the above came out in spades. Now when I walk in, I feel like a big booger is hanging out of my nose. People stand around and discuss physical pain, but bring up E, and you can hear a pin drop.

Nothing that I mention here is anything new, except I had not thought about my ego lately. I withdraw, so no one finds out about me, except ultimately, I create my own prison. I have become so adapted at hiding this after over forty years, that it is the norm for me. Sometimes I think I need to join a group or organization (besides a gym), but I really am not that fond of most people, especially women, they can be so cruel. Am I this way because of E, or is this my true personality. I am pretty sure my anti-social behavior is a result of my E.