This is the first message board I have joined and I am hoping to hear from other people in my situation or even those who are not that have suggestions.
I was diagnosed with adult onset epilepsy about 6 years ago and have had numerous seizures since then. I am on depakote 4 times a day and it does help control the seizures but I still have seizures periodically when I am stressed or around repetitive noises or flashing lights. I have been the main "bread winner" for my family my entire life, I am in my mid 40's now. I work hard, come home and cook meals, take care of all of the bills and still try to maintain a "normal" life but it is really hard when I also have the fear of being on the verge of a seizure every day. Does anyone else have to deal with this situation and, if so, how supportive is your husband? My husband pretends like nothing is wrong and I am not epileptic. (I think he is afraid to face the fact that I am but it doesn't help get me through it...) I am also afraid that the brain that I have used so hard for so many years is slowly fading away. I feel like every seizure I have had in the last 6 years has taken a piece of my brain away with it. I don't know if other people that have epilepsy feel the same way because I don't know anyone else with epilepsy so I have never been able to talk about it. Sometimes I can literally feel my brain moving from side to side and I get auras warning me that I cannot take much more stress before I have another seizures.
I know I am rambling but I am trying to convey so many feelings I have had for the last 6 years in 1 post and I really hope I get responses from anyone who can help with how I feel. The pressure is killing me slowly and I don't know what to do... Thank you for any response.
The following user gives a hug of support to jeralee4: catty1 (03-17-2011)
jeralee4: You are not alone, believe me. These boards are full of people with these problems. It's sad that your husband isn't supportive of you. Have you considered counseling with him?
I have posted many times on these boards about Catamenial Epilepsy. Research it and look up the threads that I've written on about it.
How old are your children?
What kind of work do you do? You're lucky if you're able to work. Alot of people with this aren't able to. Just being in an environment with fluorescent lights, noise, EMF's, stress, smells, it's all a disaster waiting to happen.
How do you get to work? Are you able to drive? I can't drive because I totaled my car 2 1/2 years ago and can't get my license back until I'm 6 mo. seizure free.
My seizures are caused from Estrogen Dominance. It's all hormonal!!!!! I'm told that this will go away once menopause is over. Who knows?! Meds don't control the seizures because it's all hormonal driven. Hormones control your brain more than you know. Menopause is hard enough to go through without having this added to it.
I'd recommend you go to an endocrinologist and get your hormones checked. I had cousins that had this and one started having the seizures at puberty, another sister of hers got them later in life and the other sister, #3, had migraines every month right before her period. She said it all went away once menopause passed.
Every time you have a seizure you're losing brain cells. Even during menopause alone you end up forgetting. With these seizures added to the mix it just makes things worse.
Have you considered applying for disability benefits? It takes a long time to get approved but it could be worth it in the long run if you get approved. It could take some of the stress off of you.
Do you know your triggers? Please try to avoid Soy, MSG and Aspartame. Soy is a phytoestrogen and messes with your estrogen receptors. Soy and Msg are being put in alot of our foods these days and it's messing with our bodies. You'll see some mfr's of soups putting labels on their products now saying MSG FREE!!!! They know it's bad. I can't eat Chinese food anymore either.
Research xenoestrogens. Are you a smoker?
See if you can get Dr. John Lee's book "What your doctor won't tell you about menopause", and there's one on Premenopause too. He doesn't talk about seizures in there but he talks about the other parts of the endocrine system.
Read some of my other posts and I'll chat with you again.
The Following User Says Thank You to 92261 For This Useful Post: jeralee4 (12-10-2010)
Try to lose some of the stress even if it is just by going for a walk or practicing some yoga or meditation at home. Stress can be quick and major trigger for seizures.
I'm not in the same boat as you, I've had epilepsy since I was 14 and I've been with my husband since mid highschool so I came as a package deal seizures and all. He didn't see me have a tonic clonic (grand mal) seizure until we had been together for about 12 or 13 years, it always happened when I was at school or when he was at work later on. I can tell you though when my seizures got very out of control about 9 years ago now, life hasn't been the same. Every time my husband hears a bang in the house and I'm not in his view he's running looking for me and when he sees I'm fine, he acts all casual, like he was just seeing if something fell- he worries so much and tries to hide it so our lives can be normal. Maybe your husband is doing the same thing. Everybody wants a 'normal' life or a life like they were used to having. I want a normal life, it sounds like you want your old life back, sometimes it's easier to pretend nothing is wrong than to deal with the fact that you have to change your life and lifestyle.
Also do some research with if you are worried about your brain. Status Epilepticus is a state of persistent seizure and that is when you lose brain cells, it is due to lack of oxygen to the brain. If you are still worried ask your epileptologist or neurologist, I'm sure they'll tell you the same thing- mine have been telling me that for years.
Thank you both so much for your response! I will research about all of your suggestions.
I also had my license taken away about 5 years ago for a little over 6 months because I went to the ER too many times and one of the ER doctor's reported me. You have to go through a 1/2 hour driving test and a written test to get your license back after you are seizure free, at least that is what they did to me. The trick for me to getting my license back was kind of fibbing about how many seizures I had and to never go to the ER during that time so that I could get it back. I don't know what my family would do if I can't work so I was desperate to do anything to get back to work. I am also "lucky" enough to have auras so I know when I don't feel right and a seizure may be coming on. I have had to pull over while driving a couple of times but I am thankful for them so that I didn't actually have a seizure while driving, and I feel confident that I won't.
I know that I want my "normal" life back again but I am trying to deal with the fact that it will never happen. We have a teenage son who is so very protective of me, even if he has to stand up for me against my husband (his Dad). He will not let me bend over to pick stuff up because he has seen me have a seizure while bending over. He tries so hard to take care of me but I don't think it should be his responsibilty. I just get so tired sometimes of trying to pretend everything is o.k. so that my husband thinks so too and my son doesn't worry about me.
I am so thankful that I finally joined a group here that has people going through the same thing. It is tough when no one else that you know has the same problem and when you tell new "friends" you meet that you have epilepsy some of them have looked at me as if I just told them I am crazy and they do not want anything to do with me... I hate the stigma attached to epilepsy!!
Thank you both again for your response and I hope to chat with you more.
On a side note, does anyone else have a problem with the smiles at the right when you try to type a reply? The 2 on the bottom left with the eyes moving like crazy are really annoying and are seizure triggers for me. I have to type without looking to the right, it's a good thing I can type basically without looking at the keyboard or I couldn't even be on this message board. They need to remove them from the epileptic board or put them down further so they don't trigger a seizure for anyone else that has the same triggers as me.
jeralee4: there is a key (box) down on the left side if you scroll all the way down that has info in it about the smilies. I don't think you can control what others put on here though. I know they are annoying and make me dizzy too. The ones that don't move are o.k. but the other ones I don't like.
How are the people you're working with dealing with the fact that you've got E? Are they understanding? You're lucky you're able to drive because it's a big dilemma for me. I don't have any auras or warnings that something's coming. I just had a seizure here the other day making cookie dough with my son and he didn't realize anything was going on. I just went along with what I was doing but I know I had a seizure because I can't remember certain things, like him sifting the flour and mixing it into the butter mix. These are the things that scare me.
I hope you're writing all your seizures down in a calendar or journal. It's good info to have for the doctor to see what your patterns are. I am also affected by the moon cycles. There's no doubt about it but the doctor doesn't believe me. I've got it recorded on my calendar.
I also had my neurotransmitters tested, my toxic and non-toxic elements, and hormones. I found out that I was high in MSG and low in Taurine. Taurine is reduced in your body when you eat/drink aspartame. The toxic/non-toxic test revealed that I was low in magnesium and selenium. I also had another test called a Bio-terrain test. That's where I found out my mitochondria were out of balance. I had these tests done by a natural doctor. The neuro wouldn't do them. All they want to do is drug you. I also found out I was high in something called gadolinium! What's that? It's the dye that they inject in your arm when they do an MRI to enhance the images for the technician! It's a toxic element and my body didn't get rid of it. They'll never put it in me again! The guy that I had the Bio-terrain test done by recommended a line of products that could help me but they were all laced with herbs and I couldn't take them because they made me have more seizures. Herbs don't mix good with these AED's. I can't even drink green tea.
I can't believe how many people I'm connecting with that have these seizures. The more I learn about it the more I blame our toxic world and foods we eat. It all messes with our brain and just makes the brain cells misfire. Our bodies are full of electricity and these things are making us short circuit. Have a good day!
The Following User Says Thank You to 92261 For This Useful Post: jeralee4 (04-01-2011)
Hi jeralee4 and welcome to the boards!
I'm sorry to hear of the problems you are having but know that you are definately not alone. Although my situation is a little different I understand what you are going through. Know that you are extremely lucky to be able to drive and work. I am 27 and unable to drive or work. I had a job at one point and had a seizure at work and was fired as a result. Reality is your husband can't understand what you are going through because it is impossible for someone to understand that hasn't been there themself. Know that whenever you are feeling down and need someone to talk to these those of us on the boards will be here! Hang in there!
The Following User Says Thank You to cardshark For This Useful Post: jeralee4 (04-01-2011)
Thank you both for your response. I have not gotten on here in a few months because I was ashamed that I actually posted my feelings. I feel like so many people cannot relate and don't know what we are going through, and I don't know another single person in my personal life that can, so I feel like what I am going through is not significant. I contribute to all of my friends Relay for Life (for cancer), Diabietic, ms, and many other problems that my friends or friends of friends have because I feel like they have a "worse" disease than I do. Well, you know what, they don't. I'm sure I will have a lot of people disagree but for those of you who don't have epilepsy, you will never know how it kills your desire to live every single day in addition to all of those smart brain cells you used to have.... I want my old life back and it hurts so much for people to not understand what I am going through. Some of the people at my work have been wonderful, the owner of the company being one of the best supporters I could have ever hoped for. But, there are other people there that I work for and with that discount the fact that I have seizures and that certain things trigger them. I had a stupid coworker at work today yell at me and say "Are you kidding me?! Birds chirping can trigger a seizure?!" Yes, they can. As can any other repetitive noise or blinking light. Does that make me stupid?! No, it doesn't!!! I am a very intelligent woman who has a great job and is a productive member of my work, oh, and I also have Epilepsy. I am sorry that I have to miss days because I feel a seizure coming on, and I am sorry that you don't understand it. But, that doesn't make me any less than you think you are!!!!!!!!!!
I'm sure a number of people will disagree with what you said about cancer not being a worse disease than epilepsy, but know that I agree with you. I am a multiple cancer survivor (I've had surgeries, radiation, and chemotherapy) and can tell you that my battle with epilepsy has been much worse than the battles with cancer. Part of the problem is everyone knows someone that has battled cancer and it is a much better understood disease. As for epilepsy, it isn't something that people tend to talk about and it is completely misunderstood. Not to mention that most people that have cancer you can take one look at them and know that they probably have cancer. A large portion of people with epilepsy look perfectly fine and "normal" to the human eye so when you go into a seizure people just think your being stupid or an idiot, they don't even realize you have a uncontrollable medical condition that is causing you to behave that way and it is a medical contdition, not a mental illness. Plus most people only associate epilepsy/seizure to grand-mal seizures and don't have a clue that there are other types of seizures that are less obvious. Cancer is also easier for me to deal with than the epilepsy because with the cancer, one way or another, there is an end in sight; the cancer is either going to kill you or your going to beat it versus the epilepsy that you just continue to suffer with for a lifetime and it acts up suddenly and often with no warning.
Hang in there and we will all get through this battle together!
Last edited by cardshark; 04-03-2011 at 05:45 PM.
The following user gives a hug of support to cardshark: 92261 (04-03-2011)
The Following User Says Thank You to cardshark For This Useful Post: jeralee4 (04-07-2011)
Thank you so much cardshark! You explained how I felt much better than I ever could have. To all of the other people that read what I wrote, I didn't mean to say that I felt cancer was easier or less significant than epilepsy, it's just that I feel epilepsy is worse because of all the reason that cardshark so elegantly wrote. We do not have the understanding or support of most people and it makes it harder to deal with for some of us.
The following user gives a hug of support to jeralee4: 92261 (04-08-2011)