How does your SO feel about your seizures

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horsehead

horsehead

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I found out that the medication,keppra, that the docor is going to put me on is pretty expensive. So my husband says yesterday," Well this medicine is not like your asthma meds,it's not going to kill you if you dont take it.This kinda made me feel like he doesn't think my seizures are a problem.Do any of your family members feel like this? How do you feel about it?
 
I find the folks I thought would understand didnt and the ones I thought wouldnt did. My mom the worst about it. I wont even discuss it with her. Its a people thing. Everyone handles things differently. SOme use jokes at inapproriate times as they are nervous as well. I try : ) and go easy on others. I remember when I was ignorant. ahhhh the good ole days lol... But I understand completely.

I have a wonderful husband who is so supportive, I cant imagine life without him. Hes my best friend and I like him. He is step dad to my kids the last 8 years. YET he is a professional educator who as smart as he is is still limited in his "educational" thinking pattern. He doesnt really get my sons sensory issues. He understands he has them but Im not sure if he understands the complications. He is my sons strongest adovcate in school and in life. He pushes my son to do better and is very supportive of him, just this one lil thing a sore point between us. Example: He is upset that my son cant remember to put the garbage out every tuesday. TO him, whats the big deal? And hes right its not a big deal BUT to Phillip it is. I remind him every Tues and he does it. I just cant depend on him to do it without reminding him. I also purchased Phillip a dayplanner. Im hoping he will use it and be better organized. I have been thinking for days to post about it but I thought maybe a bit too personal? I also undersatnd the toll this is having on my husband. It makes me feel bad and yet there is nothing I can do to fix it at this time. As I told him yesterday, When it comes to a 19 yo with nuero problems and a 57 yo man with 2 Masters? Kid going to win hands down everytime. I hope this doesnt make my husband sound bad as he is just the opposite. Its just, I guess, alot going on and it effects everyone.

To be honest, I really dont discuss this with anyone outside of those with E as, at this point, Im just not up to the bs. So I just smile and say things are fine. I find it easier than sharing at this point.

good luck
joan*
 
He is the only one working so money is always an issue.I just dont think he understands about seizures.I dont think its just he doesn't want to pay out money,which he is going to do,he just seems to think the seizures cant hurt me.
 
My father had 2 grande mals in the 80s. They were brought on by a change in his blood pressure meds. He was on anti-seizure meds for a year and then they weaned him off and no problem since. He doesn't understand why I can just take the meds for a year and go off them. He doesn't understand all the variable with seizures and meds.
But I give him credit, he took the time to listen to me. My mom just stared at me, like she didn't get it and didn't have an interest in learning about it. This is the same woman who will call my son 20 times if he gets a cold.
I have been on Keppra for several months and it is really helping with stopping the seizures. I am now 4 months seizure free! But then back to all the variables involved...some people don't get results on keppra. But I think it is worth trying.
 
Keppra is a very expensive med to foot the bill for...I know, I have been on it for the past 6-7 years & 3 of those years, we paid for it out of our own pockets. My husband always complained about the cost, but knew I had to have it. I think my seizures scared him more than they did me (still do). When I have a bout of seizures, it's status epilepticus (non-stop seizing--with both complex partials & tonic clonics). On the first visit to the ER, the doc explained to him, that status can cause brain damage. Now, he's a little annoying with the "Did you take your meds?" every day, twice a day...;)

I don't really know your situation, but I think I would search out some specific information on what seizures can do to a person and present it to him. Regardless of whether or not you use keppra or another AED, you must take care of yourself--some find very effective control through diet & alternative treatments.
 
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My SO does not understand very much about seizures. Has never seen his daughter have one. Rarely will he read what I research. Says I should make an appt. with the doctor.
Believes that a med will take care of everything, yet did not have to personally deal with AED side effects.
Does not believe that people can be sensitive to wheat, or dairy.
Does not understand how natural sugars can affect blood glucose levels.
He does not understand seizure triggers.
He is willing to shop and purchase what I ask for, especially if it is without additives, or unprocessed food items.
He believes everything in moderation. I ask if that works for those sensitive to peanuts.

I do most of the cooking, and making of lunches, so for the most part I can monitor it.
However, this gives my daughter mixed messages. I just keep quiet and keep doing what I am doing... because the proof is, she is getting better. No one can argue that.
 
My husband has been supportive and present through my diagnosis and neurology tests and appointments. Still, even though we've been married 34 years, he's never witnessed one as mine are mostly simple partial seizures. I've had them in front of them, but, since I can't talk while I'm having one and don't lose consciousness, he doesn't notice at the time. My daughter has witnessed one along with my coworkers and friends at work. So, one another level I think a part of him is having a hard time believing that they really are seizures and that they need treatment. Sometimes I almost wish I would have an obvious one in front of him.
 
Mine unfortunately ...

Came to an end after over 20+ years
of marriage (strangely, it wasn't until
several years of divorce when both my
son and I learned HE had Epilepsy too!)
and we would have been married for 30
in a few years ...

:(

Epilepsy & Neurological problems finally
took its toll upon him, he was supportive
at first half of the marriage but the latter
half, everything just went downhill and
he just could not take it anymore - he does
now, have regrets for being selfish. While
he has remarried for the 3rd time (this was
my 1st marriage, but I have no intentions
to be married again, after all, being married
for that long - I'm did, done, dooed it!
*laughing*) - but he and his new wife, we
are friends now though.

The whole thing is just unfortunate, mainly
due to "selfishness" ... and I am being very
honest here.

:?
 
I have been one of the lucky ones. My wife has always been pretty understanding about my E. I am not saying she is a saint all the time or isn't upset on the things we miss out on in life. It is just that she is there for me when I need her and NEVER complains about the cost (though my insurance has kept us from serious financial strains).

She has saved my life TWICE. I explain it in the Hero Stories thread. Epilepsy can be deadly in two ways. First, the seizures themselves can get out of control and cause death. This is rare, but we have at least two cases for sure here in our CWE family. Second is when the seizures cause you to injure yourself in falls, accidents, burns, or like me almost drowning.

Be patient with each other and help him understand how much you need him now. The Keppra really helped me for over five years (though I am now needing to switch). Just recently, Keppra was introduced as a generic. Feedback on its effectiveness is just starting to roll in, but it is much cheaper IF it works for you.

Personally, I would stay on the brand name until you get a better Dx and follow up on Bernard's suggestions.

Best of Luck
 
I was not givin the brand name keppra .I got the generic.We can afford the meds it just puts a bit of a strain on the pocket book.Maybe I will do some research on what can happen to someone if not treated and show it to him like one of you suggusted.

I had another question. If you have seizures does that mean you have epilepsy?
 
I was reading a form given to me the last time Rebecca was in the hospital. Today a line stood out for me:

A seizure disorder is not a diagnosis but is a sign that something else may be wrong in the central nervous system.
Click to expand...

Then you read on the Epilepsy sites that two or more unprovoked seizures is Epilepsy.
I have to argue that, as I have met those that have seizures due to many reasons.

A while back I decided not to worry about how something was labeled. It is my belief that for my daughters situation, she needs to be healed from the inside out. As I move in that direction with her care, she is improving.

She is med free.
 
LOL...luckily for me, my hubby is very supportive. He goes to all of my doctor's appointments with me, and half the time, asks more questions than I do. :) If I say that I can wait to get a new prescription till the next day, he looks at me like I'm nuts and drives straight to the pharmacy with me.

If you have seizures, you do not necessarily have epilepsy. There are several things that can trigger seizures such as low blood sugar, your thyroid levels being out of wak, or even certain medications. Neurologists only give that diagnosis after running numerous tests, and trying to dismiss other possible causes for the seizures...or at least I should say the good neuros do. :)
 
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