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tired all time
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hawiian_girl11 posted:
aloha,

question:

why do the AEDs male you drosy and cause you to sleep a lot of the time. I take them on time and never miss and about an hr after I take t hem I am in a drugged up sleep or nap.

EVERY day.

I sleep for about 2 hrs or more. THe neuro is going tl put me on a e.

new drug come my visit in april. Topamax gone? who knows?

I take 800 mgs of LAmictal 200 mgs of Topamax and 3 mgs of klonopin..

NOs/e frm them no problem frm them just a lot of sleepiness and naps form the drugs.my husband has an understadong that I can not move very fast at things, but when I got to y mom's house she is constanly trying to make me move fast er than I can or answer her questions faster than I can. I have a slow reaction time to answering questions. Sometimes people have to try the question or questions severl times in differfenrt ways unti I can get it.

she is on my back about that all the time when I ms there.

my husband is not or does not dothat.

I also fish for words my mom is impatient with that as well/ husband is not.

My mom doesss have an under standing about epilepsy from what hsr has read from what I have told her etc. So has Jasyn..

why the difference between the 2. my mother has lived with it longer than Jasyn and yet is way too impatient.

everything has slowed me WAY down and I can not help .
it

what is going on here.

any suggestions for when I Go to my mom's home when I am in PHX for someyhing?

nancy
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dancer86442 responded:
Nancy,


A Lot of our meds are sedatives. To Calm our brain. I Know my med is one of them. I've adjusted to Naps. No Choice, unless I too, want another ride on the med merrygoround.


I have no clue Why your Mom & Jasyn are on different pages concerning your Issues. Except Jasyn lives w/ you on a Daily basis & has accepted the side effects as 'norm'. Whereas, your Mom has known you Longer, but, may not truly understand the effects of your meds. A Lot of PPL are impatient! Me, I got Lots of Patience. When you see Mom again, use our Drug Tab! Let her read about the effects of your meds! Note at the right side, bottom of Side effects box, there is More Info w/ a Long list of other possible side effects. But, keep in mind, Not everything you are experiencing is med side effect. It can be due to your Epilepsy, too. And it can be Very Difficult to determine which is which. Does your Mom go w/ you into the DRS office? If not, then suggest she Does that! If so, ask the DR these questions & maybe She will Listen!


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
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hawiian_girl11 replied to dancer86442's response:
ALoha,

I go in alone,

I just figure since I am almost 41 I am old enough to go in there alone.

She watches my kid. while I am in there.

But your idea is a good one. She needs to LISTEN to someone.

If not me the neuro.

HE will not bie her,

HE knows his stuff and has gotten me this far. From almpst dying to who I am today.

My mom has big issues with the short term memory stuff and will not let up on it. that is my BIIGEST pet peve.

But I fly in from Hawaii in April so I will take her in with me and Jaysn and Gretchen can sit in the waiting room and wait,

Hopefully he can get something across to her.

She is hard-headed like both of her parents mpre so like her mmom.

nancy
 
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dancer86442 replied to hawiian_girl11's response:
Write down a List of Questions that you would like him to Answer/clarify for Her! I really think your mom just needs a bit more Education & your Neuro sounds like the Man to Tell Her!
March 26 Epilepsy Awareness Day Advocate
 
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hawiian_girl11 replied to dancer86442's response:
Hi candi,

She has this thing with a thing called a slow thought process or delayed thinking,

WHen I read it to her she always tells me you have told me that a million times I don't need to head it anymore, I know.

But when she asks me a question and I don't/can't answer right away because I am still thinking about it I get yelled at for not answering her.

why don't you anser me when I am talking to you or asking you a question?!

I tell her I can't anwer that fast it is not that I can't anwer it I just can't do it as fast as you want me to,

So I read to her one more again in more than one of my books about epilepsy and my drug books and they basically all say the same thing so why is she so impatient and saying she has been told a million times and that she knows but then gets all hot under the collar when she doesn't get an answer right away when I am still thinking up an anwet.

Sometimes people who know me have to ask me in 3 or 4 different ways toget an answer that I can answer right away, sometimes it is just how it is worded but she is so intent on getting an asnnder right away calling me rude if I don't that that is aa she can think about.

Sometimes that is why I don't come around when I am in town and I have an immediate flight out the same day.

Nancy
 
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hootyowl2 responded:
It may be that she needs more education re your epilepsy and the meds you must take. Epilepsy also makes us sleepier.

It also sounds like she is in some kind of denial about your medical issues, and just thinks that she can 'make you better' if she tries hard enough. Mothers do not like their kids to be sick, or have medical problems. Some do not cope with it very well, apparently she is one who does not.

Is there an epilepsy support group in her area? Maybe that would also help her.

I generally fall asleep at my computer a lot. I like to be on here. However, even if I was not on here, I fall asleep a lot--or else work all I can to get stuff done.

Hooty
 
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hawiian_girl11 replied to hootyowl2's response:
Aloha, Hooty,

THey are trying totake me off some of my meds NOT AEDs with that they are trying to add a braind new one and take Topamax away. IT is affecting my memeory too much.

THis drug is not released until April 7th and I do not see him until the 22nd.

I FOund a live support group in Honolulu where I live but have been chicken to go but will when some of the sz activity slows some. I have been having drop attacks and had a whole slew of them 2 nights ago I am on crutches with a cast and am falling all over the place. I get out of bed to go to the bathroom and either fall asleep standing on my crutches and fall or have multiple falls. Same thing with getiing into and out of the bathtroom more falls.

I am going to take this up with my doctor when I fly into so see him.

There is a live group in downtown PHX where my mom lives but I highly doubt she will make any attempt at even going there. She is not the one with the epilepsy so she there fore does not need to go. I have tried this to go together when I was living with her even though I was married.

nope she wouldn't have it.

Jaysn told me he would go with me when I wanted to go. Honolulu is a big city and the live group is about 10 miles away but we are going to go to it together and even bring Gretchen.

THis is why my visists are getting few and far between these days when I get into town for TMJ and headache doc and ortho pedic doc and Neuro. I make no effort right now to even let her know I am cmoning. I go to my appts and stay over one night in a motel or leave the same day at a late flight to get back to HI.

I feel bad that I have to do this right now, but if she is going to do this stuff I am not going to go thru it.

what next

any suggestions. this is making it so Gretchen can't see her grandma and I hate to do t his but rght now it has to be like this because I can not stand this.

Nancy


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