difficulty accepting epilepsy - diagnosis later in life

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petox1970 said:
when I found CWE it was a saving grace. I'm too strong of a guy to have to admit to any frailties or have the time to do so to a doctor face to face. :sad: sure sure sure
besides, medical care can get expensive, and it can also lack the first-person relation of issues
"the other day ____ happened to me..." can mean a lot more than "I've seen many patients who have expressed that ____ happens to them"
and many {hugs hugs hugs} in return
Peter
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well put! I am female and feel the chip on my shoulder growing when i go to see a doctor. I have been active all my life, and have from time to time thumbed my nose at the medical community. I feel like when i do see a doctor, at every appt. they put a big fat "N" (nut) by my name on my chart. I feel insecure, defensive, and like i willed myself to have this wonderful diagnosis. The flip side is, i have had my share of pity parties, and feel entitled, but i just can't stay there too long or my husband starts giving me weird looks, kind of similar to the ones i give him on occasion.

From reading your posts, your sense of humor is a real asset, cause we all really need it dealing with all this fun.:bigsmile:
 
hi petox 1970, i was diagnosed back in march of this year with epilepsy am 26,s I am finding it hard to come to terms with as well. well im saying diagnosed i had all the eeg's and brain scan done and they both came bvack normal,since taking the meds i have had no more seizures but i am having every solitary side affect from the medication i am on, i am at a point where i do not want to take the meds and suffer with the seizures.
 
funny you bring this up cos my psychiatrist told me that after 3 yrs this has been a problem that is concerning him.I said not like it concerns me-haha.Him and my therapist keep telling me that I think if I find the right combo of drugs that Im going back to my old life and I cant accept that it doesnt exist for me anymore and I need to make a new life to be happy with and quit searching for something thats never going to happen
 
crazychick said:
hi petox 1970, i was diagnosed back in march of this year with epilepsy am 26,s I am finding it hard to come to terms with as well. well im saying diagnosed i had all the eeg's and brain scan done and they both came bvack normal,since taking the meds i have had no more seizures but i am having every solitary side affect from the medication i am on, i am at a point where i do not want to take the meds and suffer with the seizures.
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girl, i know what its like!! i fought against taking my medicine for almost two years, thinking that it would change my perception, take away my ability to do my artwork [ i am a fine artist, portraits and wildlife! ] and generally mess me up.

after taking it for so long i realized that it has some benefits. it makes me feel calm, it stabilizes my moods, it helps me to concentrate and best of all, it stops my seizures in its tracks..prevents them.

When i dont take it, i keep thinking of random things over and over, its like my brain is on full charge and i can't silence it. when i take my medicine, my mind is calm, i no longer have racing thoughts. so i am happy again
 
mine has mde me into a different person someone vam not and i dont like it, it makes me feel so low all the time
 
crazychick said:
mine has mde me into a different person someone vam not and i dont like it, it makes me feel so low all the time
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I hear you. The D monster (depression) is a real buzz kill. It has turned me into a recluse. Not taking the anti-depressants. Don't need another set of side affects, and those alone can make you depressed. I just fight the good fight and try to fend off the negatives that like to invade my brain. Exercise, diet, CWE!!:bigsmile:
 
Everyone here is so supportive, i really like this site..

I went to another site last year, a major site that has a lot of visitors...E dot com.. the people there were rude to me and told me that i was a liar after i described to them my journey with E !! HOW RUDE!!

however this place is like an oasis, a community of supportive people, and I really appreciate it. I know now that i can come here and have support and guidance and that the people here really care
 
keppra also is making my hair fall out to. have you ever suffered this with any meds? no bother blueskies thats what were here for we are all going through the same really and its nice to have a bit support isnt it?
 
crazychick said:
keppra also is making my hair fall out to. have you ever suffered this with any meds? no bother blueskies thats what were here for we are all going through the same really and its nice to have a bit support isnt it?
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No, I take Tegretol, sometimes the generic version, [Zeptol is the meds that they gave me, same family of drugs but a generic equivalent]

The side effects are memory loss, tiredness. i caffenate myself daily just to keep up with it. i also take vitamins, because i know that this medication depletes my nutrients.

I hear that biotin helps with hair loss and hair regeneration. here's a link to a recent discussion on it:
http://www.coping-with-epilepsy.com/forums/f23/biotin-vitamin-13526/
 
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i am taking biotin vitamins and a vitamin hair skin and nails which contains biotin and its just not stopping, my brush is full everyday my eye brows and eyelashes r coming out 2. i just wanna stop taking my meds all together.
 
Im doubtin it now because the more i take the more my hair.seems.ti be falling out more. Eee god i jus wsnt my hair.help.
 
crazychick said:
Im doubtin it now because the more i take the more my hair.seems.ti be falling out more. Eee god i jus wsnt my hair.help.
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((HUGS))
Do some research, hit up google for a few hours with keywords that may help your situation. look up side effects of your medication. look up the vitamin and mineral depletion that comes with it [seems all AED drugs take some form of nutrition out of the body] And dont forget to pamper yourself, you deserve it!! you really do...
 
Av tried everythin thats the thing. Tried every vitamin tried biotin. Nithing stops or changes which is y i got back onto my neuroligist which us takin far to long. I aint.got an appointment till december hw shokin is that? am so fed up with it all. Can u understand y i wud rather put up wi seizures than all these side affects?
 
Yes, i do understand. I went through that when I first got onto my medications. They made me drowsy, sleepy, irritable, moody, and generally tired. After a few months i learned how to deal with it, little by little, a day at a time, step by step.

Seizures are very hard on your body. They are hard on your mind too, and without medication, its easy to fall into depression, rage, sadness.. Its a tough road.

I've been reading about the benefits of Fish Oil, Omega 3's which are *supposed* to help with depression. Been taking them for a few days now, and it seems to add an extra boost to my energy since my diet isn't all that great. Plus i smoke cigarettes, eek!! i know i shouldnt but dang, let me enjoy at least one thing in my life!!

I like to think that for each problem in life there are at least FIVE options, five different roads, five decisions. when i start thinking that way, it brings me out of that feeling where i feel that i've lost control of my life, and that there is no hope. Thinking that way allows me to come to better decisions in my life. My tarot also helps, it shows me the way and lets me know that there are always options. the chinese say - within crisis there is opportunity. they are right!
 
im generally ok its the hair loss and tiredness which i told would get better but is getting worse, i have been on keppra since march, i can deal wi the tiredness its just my hair loss really. my neuroligist is rubbish my nhs is crap. n thats getting me down too, i really have had enough, theyu are ment to be there for you but arent.
 
hello

crazychick said:
im generally ok its the hair loss and tiredness which i told would get better but is getting worse, i have been on keppra since march, i can deal wi the tiredness its just my hair loss really. my neuroligist is rubbish my nhs is crap. n thats getting me down too, i really have had enough, theyu are ment to be there for you but arent.
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sorry - sounds like a rough time for you. I was reading about your hair loss and I will tell you what I take. Super Amino 4800 MG, maximum strength amino acid caplets - from Nutrition Depot here in the states. It says to take 12 a day, but I take 4 and get great benefits. Everyone is different, and this does have other ingredients also. I would say check with your doctor, but they are not in the business of recommending supplements, so I just don't ask. The supplement that says for hair, nails, and skin can not hold a candle to these, in my experience. I am not sure if this can go up against what the Keppra is doing, I take Dilantin and hair loss has not been my problem. Hope it gets better sooner than later. xo
 
crazychick said:
hi petox 1970, i was diagnosed back in march of this year with epilepsy am 26,s I am finding it hard to come to terms with as well. well im saying diagnosed i had all the eeg's and brain scan done and they both came bvack normal,since taking the meds i have had no more seizures but i am having every solitary side affect from the medication i am on, i am at a point where i do not want to take the meds and suffer with the seizures.
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hi crazychick
and you said you're on Keppra?
I was on that for a brief period and I found it not agreeable at all to say the least
it still feels like that s*** was like a sand wedge into my brain

I'm glad to see you found this forum - this place has been very informative for me and hopefully it can be for you too

I take phenytoin myself, 500mg. I was put on 2000 (?) mg of the levetiracetam for a few months during which time my mind was blown completely out of the window with a seizure period/side effects of levetiracetam
who knows - but I'm still trying to pick up the pieces of what
Peter
 
hi peter i cant cope with the side affects there driving me insane, yes this site is a god send. the people on here are so helpful and understanding which im happy with. i just wanna be able to get on with my life without all these side affects, im 26 i shouldnt be tired like this all the time, i was told it would wear off the tiredness but its got worse n and as for the hair loss thats just ridiculous. well am waiting to see my neuroligist am going to get this sorted. feel free to talk to me anytym.
 
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