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  • started having seizures again, what do i do?

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    Old 04-04-2009, 11:23 AM   #1
    redmuppet
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    Exclamation started having seizures again, what do i do?

    i got diagnosed with epilepsy when i was 16 and was seizure free for 4.5 years!
    last october i started having fits again but these are more serious and at worst i was having them 4 or more times a day, every day!
    ive started on some new meds but it doesnt seem to be working it has helped a bit, they are not as regular but i am really struggling to get on with my daily life! my mum is stopping me from going out! IM 21!!! i know she is scared for me, but she tells other people that i cant stop living my life and then stops me from doing things! its so frustrating!
    i dont know what to do, it is really getting me down! i feel like a prisoner in my own body!
    i used to spend a lot of time in my car, but cant now! i cant take my dogs for a walk, nothing! it feels like i cant do anything and there's no way to escape it! worst of all nobody understands, some friends dont want to go out with me in case i have a fit! they are good friends but are just scared! it just hurts! im scared to do so many things, im an active person so it is driving me mad!
    the worst part was when i started having the fits again in october the hospital started saying that they were put on and fake!?!
    what do you say to that? how do you fake an epileptic fit? and why would you?
    it has taken 7 months for them to actually understand that they are epileptic seizures and i now get treated a lot better! they didnt even take into account that i have actually been diagnosed, that i was off my meds! had just started new meds, take into account that i am seeing a neuro dude!
    it was such a bad feeling, to have the fits is bad enough but then to be told by the people who are supposed to help you that they dont believe they are real?
    i actually started to think i was losing my mind and question myself because i could feel some of them coming on and thought that i could stop it from happening or just ignore it! it was me thinking of it, so if i ignored it it wouldnt happen! i dont really understand!

    has anyone else been in the same situation and can anybody give me any advice on how to carry on with my life! i would really appreciate it!
    thanks! x

     
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    Old 04-06-2009, 07:51 AM   #2
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    Re: started having seizures again, what do i do?

    What meds are you on? Have you had an MRI and CT Scan lately? My research on this is that sometimes these things start happening at puberty or menopause. You said you were 16 when they started. I would suggest that you have your hormones checked because you might be able to control these with added estrogen or progesterone. Progesterone is the calming hormone in the brain. Our environment is very toxic these days and upsets our bodies. Do fluorescent lights and computers bother you? Electromagnetic fields, stress, lack of sleep, diet and vitamin deficiency can also play a role in this. I know it's tough with the driving issue. I lost my license last year because I crashed my car when I had a seizure while driving. I've lost my independence but at least I still have my life. Your friends are not really your friends if they won't stick by you. Find some new ones - I had to. Do you have any support from a church? I feel for you. It's tough some days. Try to stay positive and don't give up on finding an answer to this. I've had many allergic reactions to meds and I'm finding that there are some natural alternatives out there that can help. Find a natural doctor that is willing to have your neurotransmitters tested as well. MSG is also a big culprit. It's in everything. It raises the glutamate levels in your brain and can trigger the seizures. It's in soups, salad dressings, crackers, chips, Chinese food, etc. Don't give up!!!

     
    Old 04-06-2009, 01:03 PM   #3
    redmuppet
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    Re: started having seizures again, what do i do?

    i used to be on epilim, which controlled it for years, but i then started having them out of the blue! im now on lamotrigine, it has reduced the amount of fits im having!
    ive had MRI's and CT's, they just come back normal! thankfully!
    i have had my hormone levels checked and that came back okay, i only had them done in december or january.
    the main trigger for my epilepsy is breathing, lights dont bother me at all. it doesnt help that i have asthma too! the asthma isnt too bad, but i do do a lot of sports and i do have fits then! i know that lack of sleep and lack of food play a big part for me too!
    That sounds nasty having a crash, were you okay? i had a car crash last year but i wasnt fitting! i broke a few bits, but im okay!
    ive had a few big problems in my life that my friends have stood by me through, i just think the epilepsy scares them! just very frustrating, id go out and enjoy myself, but other people are putting restrictions on my life! it drives me mad!
    i have seen an epilepsy nurse today, which has given me a lot of hope! she was very encouraging, but realistic! ithink peoples lack of understanding makes things a lot more difficult! my mum doesnt help at all, she has the best intentions but makes me feel like an inconvenience! if io have a fit and start to come round she just tells me to wake up she has things to do! she never comes the hospital and gets a grump on when i do! i know she is only frustrated but she makes it more difficult! and it is impossible talking to her about it, i have tried and so has my dad! my dad is a lot more understanding and actually listens!
    i just feel so alone with it, i know there are other people going through it so im not in that respect! its just nobody around me know what its like and dont seem to understand how difficult it is! grrr! lol!
    thanks very much for the reply! you know such a lot about epilepsy, i know a bit, but im impressed with your knowledge!
    take care! x

     
    Old 04-07-2009, 06:08 PM   #4
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    Re: started having seizures again, what do i do?

    Hi Red: Sorry to hear your mom is not very supportive. That's unfortunate. My other suggestion to you is to keep a calendar that has the moon cycles on it and see if any of these seizures are happening around the full moon. The electromagnetic pull from the earth could trigger these. The ER's are full around the FM. See if you can get some magnesium and B Vitamins. These are helpful in stimulating the nervous system. Smells could be a trigger too. Perfumes, smoke, gas fumes, mold, bleach and cleaning supplies might cause something in your body. Excitotoxins are not good for us. You may need to detoxify your body with some natural remedies. I've never heard of the meds you mentioned but you live in the UK and they have meds that we don't over here. Sometimes your body might need more or less of the meds. I'm glad you have your dad. I wouldn't be surprised if your mom is having her own hormonal issues and that is why she is acting like she is. Tell her to get her hormones checked too. Good luck. Stay in touch.

     
    Old 04-18-2009, 08:36 AM   #5
    redmuppet
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    Re: started having seizures again, what do i do?

    hi, thanks again! ive just spent 2 weeks in hospital, a different one which really helped! they have now told me that i am having epileptic and non epileptic seizures, due to stress!
    bit confused and annoyed about it but what can you do?
    i should be able to get them under control now, this hospital has been unbelievable! they really helped!
    take care, thanks for your support! x

     
    Old 04-19-2009, 10:21 AM   #6
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    Re: started having seizures again, what do i do?

    Hi there. Yes, we do live in a stressful world that's for sure. It's hard to manage. Exercise, yoga and meditation are good for stress reduction. The B vitamins are also good for it. Another thing I'm investigating is COQ10. It's supposed to help your mitochondria and boost the energy in the cells. It's an enzyme that many of us are deficient in because of all the toxins we are exposed to. And as we age our cells age too. Eating a healthy diet that is free from sodas, MSG, and many other chemicals will help us. I just finished reading actress Suzanne Somers' book "Breakthrough". She talks to many doctors about how we can cure ourselves and live a better life. It's a great book if you can get it in England. She had cancer and was able to learn a lot from it. Gotta go now. I'll write more later.

     
    Old 05-19-2009, 11:52 AM   #7
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    Re: started having seizures again, what do i do?

    I am 28 years old and I have had seizures since I was 2. I know that it is extremely frustrating just to exist in your everyday life because of the fear and embarassment of having a seizure. I have only had 2 seizures in the last 8 years. I was told that I "grew out of them." The last two that I have had have been in the last year, so I have a feeling that I will have to go back on medication.
    I am now a Registered Nurse and I want to specialize in adolescent epilepsy, so that I can help teenagers cope with the situation.
    I would suggest that you really pay attention to what your "triggers" are. I know that stress makes me have seizures, so I have to take a mild anti-anxiety medication. That helps me. If you have any specific questions, feel free to ask as this is something that I have been dealing with my whole life.

     
    Old 05-20-2009, 04:10 AM   #8
    redmuppet
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    Re: started having seizures again, what do i do?

    thanks! you have such strength which i admire so much!
    last month i got diagnosed with non epileptic attack disorder, so they think that the majority of the seizures i have been having are those!
    im scared about this as it means i have to things causing me to have fits! also as long as i dont hurt myself when going into a non epileptic fit, they are not detrimental to my health and my mum is on the understanding that all the fits are non epileptic! i can just about handle having the seizures but scares me incase im in them too long and what if my mum asumes im having a non epileptic fit, when im really having an epileptic one!?!
    im not sure what to think!
    i am coping okayish now, im just frustrated that it is holding me back! there is so much that i want to do and many of them i cant do while having the seizures! just got to hope they stop!

    really appreciate your post, thanks.

    i hope your seizures stay under control!
    taake care! x

     
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