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Newly diagnosed

Wed, 11/13/2013 - 13:32
Hi, I've just been diagnosed with absence seizures at age 28. I've been struggling with the diagnosis. To begin with I thought, hay it's just a name and it will get better with meds so it's a positive thing, but now for some reason I can't accept this. My meds don't seem to be working so far and all I keep thinking is why me, why do I have to have this, I don't want it. I find myself crying and depressed at the idea of having to take medication for the rest of my life and the fear of having seizures in front of people. My husband is very supportive but my family don't seem to understand it and I feel very alone at the moment. I just can't accept that I have this. It's also crossed my mind that if it had been spotted before then maybe it wouldn't have been so bad and easier controlled although I know this isn't the best thing to do. I'm sorry for sounding like I'm just moaning but just needed to vent. Just don't see a way of being able to accept this at the moment. I'm keeping a daily diary on here plus down on paper but my memory is rubbish and often forget if I have had a seizure or not plus half the time I don't even know if I'd had one at all. I am very grateful for this website though and am finding that gaining information is helping. If anyone can relate to what I'm going through then I would really appreciate some tips on how to accept it and how to learn to live with it as I know that's what I have to do. Thank you Andrea.

Comments

Re: Newly diagnosed

Submitted by mereloaded on Wed, 2013-11-13 - 14:33
This is the place to vent. There is no judging in here. First, it is completely under stable to feel that way. Epilepsy is such an ugly word and it carries stigma nd undue shame. The good news is that epilepsy is not a death sentence and it is just like having any other condition. You don't see people with diabetes to cancer hiding, they go on with pride and courage, and so should you. I understand your feelings, I totally do. I have kept my sons epilepsy hidden from family and friends because I am afraid that he will be treated different or that people may be afraid of him, but to my surprise, those that know have been nothing but supportive and caring, people are more compassionate and understanding than in the past. I, like you, went to a phase of anger and even denial (that still lingers) but I am happy and thankful for my son medication that has fully control his seizures. He has been on remission for precious 9 months now. There are new therapies, devices, even surgery. Having epilepsy is not having a death sentence, and there are FAR worse things out there. If you see things on that light, you will feel much better. See, when I take my son to the pediatric neurologist, I have to wait in the waiting room and see all of this poor families tending to wheel chair bound children that will never talk, play or have friends. I thank sweet Jesus for my problems and thank my lucky starts for my sounds cards. Yes, epilepsy sucks, no doubt, but you have a supportive husband and medical care, things to be grateful for. Many people here are alone and cannot afford insurance or medicine. So all things considered, you are lucky :) also you got 28 years seizure free! A lot of folks here have had it since birth, so more to smile about. Please know that I am not trying to minimize your feelings, i am simply trying to point out all of the wonderful blessings. It will take sometime to be able to find the correct dosage and treatment, so please talk to your physician or neuro about increasing, switching or adding medications so you can have better seizure control. Last, I wanted to add that these feelings will subside and that you will come to terms with this. I know I did. My son was scared about his diagnosis and I told him that there is nothing to be fear but fear itself. It has brough us closer too. I will tell you what I told him:follow your dreams and carry on. Do not let this stop you. Best wishes!

Re: Newly diagnosed

Submitted by just_joe on Wed, 2013-11-13 - 15:32

You tagged it merelo.

I have to say that in some peoples posts I may seem like I am comming from another angle but I try to show them that if they have dreams follow them they may have to take another road to get there but dreams and success is highly possiable.

Joe

You tagged it merelo.

I have to say that in some peoples posts I may seem like I am comming from another angle but I try to show them that if they have dreams follow them they may have to take another road to get there but dreams and success is highly possiable.

Joe

Re: Newly diagnosed

Submitted by Andrea_McBride on Wed, 2013-11-13 - 16:15
Thank you merelo. I greatly appreciate you taking the time to respond. I count my lucky stars every day that I don't have anything more serious and that I have a very loving and supportive husband. Which makes me even more angry with myself as I know I have so many things to be grateful for. I just can't help feeling like I want to take my brain out, throw it away and replace it with a better one. I honestly didn't think I'd feel like this when I first had my diagnosis confirmed as it had been suspected for a while prior. I live in the UK so I'm very lucky that I have the NHS available for me to take advantage of, otherwise there would be no way I could have afforded the EEG, MRI and meds, so again a huge thing to be thankful for. I understand what epilepsy is and what type I have but I'm still searching for answers and explanations. I'm not sure what I'm hoping to find or even if I will find anything, I just feel like I need more answers. I have another appointment with my neuro, but not until January so I'm hoping she would be able to give me some more info then. Thank you again for every one who replies as sometimes it just helps to have someone to talk to. Andrea

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