advice :(

[angie2312]

hi all

sorry for venting at you all again but am at my wits end ....

I am waiting to see the neurologist in August - have recently had EEG and MRI tests done - I also have to have an ECG when i get a moment spare - but as I just wrote I am having to wait till August which at the moment feels like the most agonising wait in the world

I am awaiting results as they are investigating TLE -I have suffered with these weird spells for years and have always suspected the big E word was responsible - saw my doctor 5 years ago and he refused to listen because I smoked and said thats what my weird moments were all about (i know plenty of people who smoke and dont have the feelings i have ) so i got cross and let down and refused to go back to him - But as it turned out ... recently my funny moments have got more and more often and stronger and stronger and i had no choice to

Well the reason that I am at my wits end is because ..... My mum ( I love her sooo much and she is the most supportive mum in the world) - I have always told her I suspected I may be suffering with epilepsy - and in the last few years have said it to her more and more - and she has shrugged it off -even though she has witnessed me full flow in my moments several times . Well when I went back recenly after 5 years to try and brave my doctor again - I took her with me and asked her to explain to him what happens to me - He listened and agreed that it could possibly be epilepsy - she came with me to the neurologist and listened to everything he said ... she came with me to the EEG and sat with me outside while I had my MRI - how supportive is she right ??? But then on the way home from the MRI told me she thinks all of this stuff is "in my head " - Dont get me wrong she is GREAT and she loves me and supports me in everything but that hurt !!!!! Now I am starting to worry that is all tests come back clear that she will just write me off - and think I am just imagining things - and I am totally not , these things are as real as the laptop I am typing on - and they make me feel so totally ill and shattered etc etc - advice please as I am at my wits end - Thank you in advance

 

[epileric]

Many people with seizures have tests that come back normal. That doesn't mean that you don't have seizures. Quite often an EEG won't acknowledge anything wrong unless you have a seizure while hooked up to it.

Hopefully your neurologist knows this & will say as much while your mom is there to hear it. If not have her read some of the postings on this site.

Meanwhile it's best not to worry about what she might think (I know.... easy for me to say). Remember that one of the main triggers of seizures is stress.

 

[skillefer]

It may be that she has to tell herself, and you, that it's in your head because deep inside she may feel a sense of guilt....like perhaps somehow this is her fault...perhaps a genetic flaw from her side fo the family, or a failure in mothering. Maybe a fever that she didn't take you to the doctor for...who knows. Her actions are in direct conflict with her words. Almost as if she's trying to convince herself that it's not her fault...(and I realize E has nobody to blame....but it is human nature to want to blame someone for things that go wonky or wrong.) That's what I'm getting from your description. Love is an action...a choice....a verb. The more you love someone, the more you act out that love. I don't think you need to be worried about your mom writing you off. Her actions tell volumes about how she truly does love you. So focus on her actions.

 

[angie2312]

My mum does feel very guilty - she blames herself for it all - she dredges up memories of when i might have hit my head etc etc and she is petrified that it could be this because she feels it would be all her fault - I have told her not to be so silly etc etc but she isnt having it - and i think if they do diagnose this her whole world will crumble - I am trying to explain that its nothing for her to worry about but she wont listen . I am worried that she will here that the test results are all fine and then go back to sticking her fingers in her ears and sing lalalalalala really loud so she doesnt have to listen to anything else

Thanks for the advice - it helps xxx

 

[flinnigan]

Moms are tough. Since my diagnoses I've realized my mom has always fallen apart when I needed her the most. It's been a long pattern of her disappearing when I need her. The latest was shortly after my diagnoses she caused a huge fight in my house with my sister then blamed my husband and I for it a few days later. Later that day I had my worst seizure ever and totaled my car (I wasn't driving rather mowing the lawn with a tracker and wiped out the whole side of the car with it) that was last July and we haven't spoken since. Every time people talk to me about her and her needs or are worried about her I have a seizure. I think she just can't handle my illness or me needing her. I've always been the one to take care of her and the rest of my family. I was the strong child, the peacemaker, the rock of the family. It's a shame she can't see how strong I still am.

 

[skillefer]

Well then...just remember that many of us have perfectly normal EEG's and MRI's. In the 30+ years I've had epilepsy, I've only had 1 abnormal EEG...and that was because a strobe light triggered a seizure for me while I was doing the test. The rest of my tests came back normal. Bloodwork, everything. And I'm not the only one here that can say that... If you are really worried about your mom, try calling your neuro ahead of time and finding out the results over the phone...explain the situation with your mom to the neuro. If it is epilepsy, then make sure that you ask your doc, in front of your mom, how they make the diagnosis when the EEG's and MRI's came back normal (if they do). And be ready to deal with a mom who will probably be terrified that your ability to give her grandchildren has ended. Or that you won't ever be able to work again. Because I think those are the 2 things my mom worried about the most...

I know, grandchildren, marriage, work, those things were the things that worried my mom the most. So I went and got a master's degree in education, became a teacher, found a great guy to marry, and am now pregnant. All her worries were answered. My mom still worries. In fact, she calls 2 times a week to see how I'm doing. Kinda nice. So if you think your mom might be that way, then make sure you ask the doc, in front of your mom, about your abilitiy to work, get married, and have children in the future. You may find that if the doc knows you want to have kids in the future, it may effect which meds he puts you on.