People who think they know it all

[Belinda5000]

Have you ever ran into someone who thinks they know it all, I will tell what happens with me or that all cases are different but just because it works for you doesn't mean it will work for someone else.
I know this because I'm refractory and allergic to 5 epilepsy drugs and I'm med resistant so it's harder for me to get drugs to work for me. Tegretol,
Topamax, Fycompa are the 3 drugs I take for my seizures.and I can't come off Tegretol with out my seizures going through the roof.I know how long side effects will be along for me.When someone has been taking AEDs as long as I have trying to get control you figure that out.

 

[valeriedl]

Oh yes I've met Einstein before, even the ones who don't have epilepsy but they know all about it!

You take 'what ever med' and you had those side effects? It shouldn't because it doesn't happen to me or anyone else I know who's on it.

You shouldn't be taking those two, or how ever many, meds together. And/or why are you on what ever dose? That's just not right. Well if it works for me then I have to.

You take that many meds? You need to get off of some. Well I've tried and it doesn't work.

You could try to control your seizures with your diet, it's better for you. I apologize because for saying that because I know there are people on here who feel this way. But I know for a fact that if I stopped taking meds and tried that my seizures would go through the roof.

You have a VNS and you're still having seizures and still need to take meds along with it? It wasn't worth it getting the VNS then. Well since I got it I went from having over 20 seizures a month to having around 7 and they aren't nearly as bad. Some people just aren't able to stop taking meds at all, even the ones who've had surgery.

You don't have any type of sign that a seizure is coming on, I always do? No I don't but I wish I did.

You have simple partial, complex partial and grand mal seizures? I wonder why you have all those types?

I can keep going....

 

[masterjen]

Oh yes I've met Einstein before, even the ones who don't have epilepsy but they know all about it!

You take 'what ever med' and you had those side effects? It shouldn't because it doesn't happen to me or anyone else I know who's on it.

You shouldn't be taking those two, or how ever many, meds together. And/or why are you on what ever dose? That's just not right. Well if it works for me then I have to.

You take that many meds? You need to get off of some. Well I've tried and it doesn't work.

You could try to control your seizures with your diet, it's better for you. I apologize because for saying that because I know there are people on here who feel this way. But I know for a fact that if I stopped taking meds and tried that my seizures would go through the roof.

I can keep going....

I'll add to the list people I know who do not have epilepsy who say:
-you can't stop your seizures mentally? You mustn't be very strong-willed
-why don't you eat or smoke MJ? That will take care of things.
-If you put more effort into your work-outs I'm sure the seizures will subside
-medically refractory seizures? You must have pretty dumb doctors (no, one of them is well known in North America and Europe for her expertise)

Yeah . . . just had this kind of conversation with an acquaintance of mine, so it is very fresh in my mind!

 

[Ruth]

You shouldn't be taking those two, or how ever many, meds together. And/or why are you on what ever dose? That's just not right. Well if it works for me then I have to.

But I know for a fact that if I stopped taking meds and tried that my seizures would go through the roof.

You have a VNS and you're still having seizures and still need to take meds along with it? It wasn't worth it getting the VNS then. Well since I got it I went from having over 20 seizures a month to having around 7 and they aren't nearly as bad. Some people just aren't able to stop taking meds at all, even the ones who've had surgery..

I take 5 meds for my seizures. My neurologist is taking me off of Gabapentin because it is causing kidney problems. If I don't take this many meds I will go into status seizures. I have in the past.

The VNS works in the rule of 3's. 1/3 of the people who take it, it works. 1/3 it works somewhat and the last 1/3 it doesn't work for at all.

Belinda5000 you take what you have to to stop your seizures. I haven't heard of one or two of the meds that you are taking but if you are getting fewer seizures then continue taking them.

Do you think that you are having fewer seizures with your meds?

 

[Blonde Angel]

Do whatever it takes to be healthy and happy.
Do what works for you.
Listen and be polite to those who are ignorant, most times they do mean well but one can say that's a load of .... when its required for those who can be just a little bit too pushy.
BE realistic.
Nothing beats love and tolerance.
keep fighting no matter the good, bad and ugly of life.

 

[Fedup]

It is so annoying when people come up to with stupid thing its not as if you have not had these things cross your mind, they might mean well but do they honestly think you take these medications for fun. I mean please, a little common sense there is a reason they are not doctors or neurologists, do they think they can cure me, when I ask them this they say no and I ask them why are they telling me what is right for me. How would you like being told your lazy or its all in your head. First I get tired from the drugs and second your right its in my head do you want some.

 

[Jezy]

Although I respect doctors the new doctor I was assigned to after my last one left is in that category. During our first appointment spent zero time listening. I am sure he is smart but I doubt he can know itall with out listening.

 

[Belinda5000]

diets don't work for me

I've tried diets and they just don't work for me such as the MAD diet.
It didn't go to well because of my heart.:twocents:

 

[seagull]

I take four different ones I don't bother with doc anymore know alls

 

[resaebiunne]

Sometimes it's just better to live and let live. Dealing with people who think they know better, even when they clearly are wrong, is a waste of time and effort. It is each persons responsibility to seek truth, but if you find something wrong, it is not your responsibility to correct it, only to know that it is wrong and should be avoided.

 

[valeriedl]

It is so annoying when people come up to with stupid thing its not as if you have not had these things cross your mind, they might mean well but do they honestly think you take these medications for fun. I mean please, a little common sense there is a reason they are not doctors or neurologists, do they think they can cure me, when I ask them this they say no and I ask them why are they telling me what is right for me. How would you like being told your lazy or its all in your head. First I get tired from the drugs and second your right its in my head do you want some.

People are constantly telling me that if I get up and do some things then it will make me feel better and I probably wouldn't have as many seizures! I want to tell them "You take the hand full of pills that I do twice a day and read that the side effects on almost every one causes drowsiness. See if you can stay awake! I feel like crap after a seizure, why don't you have one and you'll find out, go ahead and try to stay awake. Do you think I want to be laying on that couch every day sleeping instead of doing things?"

I take a nap every day because I can't help it, I'm just so tired. Many times if I don't get that nap I'll end up having a seizure the next day. If I over excrete myself I almost always seem to have a seizure too. The day, or sometimes more, after a seizure all I do is sleep.

Luckily my husband understands about me and sleeping, he's basically the only one. If I don't get that nap or spend a day doing a lot of physical activities he's very worried that I'll end up having a seizure the next day because I almost always will. The day after a seizure he really doesn't want me doing a single thing except sleep. He's seen me have more seizures than anyone else has and gone to almost every neuro visit that I've gone to so he's heard it directly from the neuro why I'm doing the things that I'm doing, not just the sleeping.

 

[Blonde Angel]

It is so annoying when people come up to with stupid thing its not as if you have not had these things cross your mind, they might mean well but do they honestly think you take these medications for fun. I mean please, a little common sense there is a reason they are not doctors or neurologists, do they think they can cure me, when I ask them this they say no and I ask them why are they telling me what is right for me. How would you like being told your lazy or its all in your head. First I get tired from the drugs and second your right its in my head do you want some.

I'm not disputing what you are saying but just remember there is also people who are may not have epilepsy but are impacted by it.

I'm standing up for someone I love.
We all negotiate differently and yes, it can be stressful and difficult. What about people who have to stand up for some one else's rights.. dealing with meetings, feeling let down or not heard are very common experiences.

It's about exploring attitudes and strategies to stand up for ourselves and for me with my girl without getting worn out and frustrated in the process.

When its nothing urgent I have to switch off, because I am in danger of putting so much effort in my girl and neglecting that the rest of my family and I also have needs and quality of life.

 

[seagull]

I got great misfortune having know all sister and mother

 

[Jezy]

There are a lot of Einsteins out there but as Blonde Angel also noted a lot of people other than the person having seizures that are impacted by them such as a wife or parent or husband that do all sorts of things from loving to helping after the seizure. I am blessed to have a wife who has done this for eighteen years

 

[seagull]

My bitch of a mother and sister moved as far away from me as they could incase I needed help..Hell would freeze before that would happen

 

[Fedup]

I'm not disputing what you are saying but just remember there is also people who are may not have epilepsy but are impacted by it.

I'm standing up for someone I love.
We all negotiate differently and yes, it can be stressful and difficult. What about people who have to stand up for some one else's rights.. dealing with meetings, feeling let down or not heard are very common experiences.

It's about exploring attitudes and strategies to stand up for ourselves and for me with my girl without getting worn out and frustrated in the process.

When its nothing urgent I have to switch off, because I am in danger of putting so much effort in my girl and neglecting that the rest of my family and I also have needs and quality of life.

I am glad you are not disputing what I say and I am not saying that anybody else is not affected by epilepsy, what I am saying though is unless you have E and live with it and have to listen to what people who do not have E say. Some of the things they say to you are very stupid and insulting. I am not talking about anybody who is affected by E although I have meet one or two who beggar belief.

It is only right you stand up for somebody you Love.

I understand the ability of how all negotiate differently, I cannot however see the similarity between standing up for someone else's right and what people can say to somebody with E.

The ability of any person to educate themselves as regards any topic is found in there thoughts and words, and as a result of these astonishing characteristic possessed by that person or pseudo-debility, conditioned by inhibition.

 

[seagull]

My mother said people like me should not have children.in her eyes people with e are retarted well my son a doctor and daughter Downs which has nothing to do with e..Sadly people still got these retarted ideas

 

[Belinda5000]

I take 5 meds for my seizures. My neurologist is taking me off of Gabapentin because it is causing kidney problems. If I don't take this many meds I will go into status seizures. I have in the past.

The VNS works in the rule of 3's. 1/3 of the people who take it, it works. 1/3 it works somewhat and the last 1/3 it doesn't work for at all.

Belinda5000 you take what you have to to stop your seizures. I haven't heard of one or two of the meds that you are taking but if you are getting fewer seizures then continue taking them.

Do you think that you are having fewer seizures with your meds?

I really can't say I'm getting fewer seizures but than if I stopped my Tegretol they'd go through the roof and also the Depakote.I don't have many choices and the VNS didn't work worth a flip and I'd end up status if I stopped all my AEDs.

 

[valeriedl]

I love the people who think that strobe lights cause EVERYONE with epilepsy to have a seizure. Yes some people have problems with them but others don't.

I went to a concert once that had a ton of strobe lights in it. The person I was with insisted we leave because they were positive that I was going to have a seizure. I told them that I'm fine around strobe lights. I'd been around them for over 5 years at that time and not once have I had a seizure. About every 10 minutes during the show the person leaned over and asked me how I felt and if I thought I was going to have a seizure then we would leave. When the concert was over they couldn't believe that I didn't have a seizure during it.

 

[Ruth]

I really can't say I'm getting fewer seizures but than if I stopped my Tegretol they'd go through the roof and also the Depakote.I don't have many choices and the VNS didn't work worth a flip and I'd end up status if I stopped all my AEDs.

I know how you feel. I am taking clonazepam. 3 Neuro's have tried to take me off of it. Each time I went into status seizures. Finally, the Neuro's have quit trying to take me off of that medicine.

I was on Tegretol for years, then I got Steven-Johnson's syndrome and the neurologist had to take me off of it. My seizures went haywire for a while.

Take the meds you need to.