Hi there-newly diagnosed
- Thread starter vix
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Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
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neilB
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Hi Vikki and welcome! Anytime you get news from a doc it does take time to sink in. At first I didn't even think anything would happen because I was involved in a serious accident and there was a chance that I might have a seizure (which I did about 6 months later). It did take a while for it to sink in but it does. Feel free to ask anyone here about anything and you'll have lots of support and wisdom.:twocents:
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Hi Vikki, welcome to CWE!
You've found a great resource! Just about everyone here has been through what you're going through now. I send a big hug your way. I think the more you know, the better you can tackle your seizure disorder, so go ahead and ask a lot of questions, and go through the archives too. And if you want to vent, there's the "Padded Room" for doing just that.
Best,
Nakamova
You've found a great resource! Just about everyone here has been through what you're going through now. I send a big hug your way. I think the more you know, the better you can tackle your seizure disorder, so go ahead and ask a lot of questions, and go through the archives too. And if you want to vent, there's the "Padded Room" for doing just that.
Best,
Nakamova
BuckeyeFan
Grandpa
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:cheers:
Welcome Vikki. Rough day when you learn something like this. Be assured, you will get through it and this group will be here to help if we can.
:cheers:
Welcome Vikki. Rough day when you learn something like this. Be assured, you will get through it and this group will be here to help if we can.
:cheers:
Crystal11
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Please don't be scared. Today's medicine helps a lot people with Epilepsy. There is testing, evals and other things necessary to keep healthy and to keep track of seizures and overall health.
We are here for you and understand what its like to be diagnosed with Epilepsy.
I am a identical twin and we both have deafblindness and epilepsy/complex partial seizures.
We were diagnosed at age 6 but not treated until I was 13 (not sis though) but didn't take Tegretol very long due to side-effects. I was diagnosed again at age 23 (I think?) lol and tried Tegretol and really wanted a referral to a neurologist who has more training in Epilepsy than a family doctor. I had testing and we found spike and waves plus driving responce on my EEG. I then had an AEEG or ambulatory EEG which you wear from 3 days while doing normal activity. For me....it was college!! How embarrassing to me! my twin did the AEEG too. We were both daignosed again after these tests and started medication.
I was on Tegretol XR first and tried a few others before finding Lamictal XR 400mg and Keppra XR 3000mg together. Its takes 5-6 years now and I'm 27 now and seeing a good neuro at a university hospital.
Anyway- it usually takes a few years to get things to settle down but some people get it taken care of and have a good quality of life pretty quickly. Its different from everyone else and each person has a unique experience with Epilepsy.
I hope you find Coping-with-Epilepsy a helpful friendly site along with those of us on here to chat with.
Take care
Crystal and her guide dog Umbro.
We are here for you and understand what its like to be diagnosed with Epilepsy.
I am a identical twin and we both have deafblindness and epilepsy/complex partial seizures.
We were diagnosed at age 6 but not treated until I was 13 (not sis though) but didn't take Tegretol very long due to side-effects. I was diagnosed again at age 23 (I think?) lol and tried Tegretol and really wanted a referral to a neurologist who has more training in Epilepsy than a family doctor. I had testing and we found spike and waves plus driving responce on my EEG. I then had an AEEG or ambulatory EEG which you wear from 3 days while doing normal activity. For me....it was college!! How embarrassing to me! my twin did the AEEG too. We were both daignosed again after these tests and started medication.
I was on Tegretol XR first and tried a few others before finding Lamictal XR 400mg and Keppra XR 3000mg together. Its takes 5-6 years now and I'm 27 now and seeing a good neuro at a university hospital.
Anyway- it usually takes a few years to get things to settle down but some people get it taken care of and have a good quality of life pretty quickly. Its different from everyone else and each person has a unique experience with Epilepsy.
I hope you find Coping-with-Epilepsy a helpful friendly site along with those of us on here to chat with.
Take care
Crystal and her guide dog Umbro.
RobinN
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Hi Vix - Welcome
You have found a safe place to share your worries, and fears.
When my daughter was first diagnosed, I too was quite scared. I went on to learn all I could about the disorder. I now am not so frightened by the situation. In fact for me it has opened up a whole new dimension to how I view the world. Some good, some not so good. Yet it all has made us both stronger.
My daughter's treatment does not follow the conventional treatment prescribed. We tried that route and her life turned upside down. She is now controlled by nutritional means, and the quality of her life has improved immeasurably.
Remember that Epilepsy is only a label. Seizures are only a symptom. Once I learned that and realized that epilepsy is not a disease, I decided to work darn hard to find the cause. Luckily for us, we could make changes to her lifestyle to improve her condition.... and she was willing to.
I hope you find the support here at CWE that you are looking for.
You have found a safe place to share your worries, and fears.
When my daughter was first diagnosed, I too was quite scared. I went on to learn all I could about the disorder. I now am not so frightened by the situation. In fact for me it has opened up a whole new dimension to how I view the world. Some good, some not so good. Yet it all has made us both stronger.
My daughter's treatment does not follow the conventional treatment prescribed. We tried that route and her life turned upside down. She is now controlled by nutritional means, and the quality of her life has improved immeasurably.
Remember that Epilepsy is only a label. Seizures are only a symptom. Once I learned that and realized that epilepsy is not a disease, I decided to work darn hard to find the cause. Luckily for us, we could make changes to her lifestyle to improve her condition.... and she was willing to.
I hope you find the support here at CWE that you are looking for.
vix
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Thank you so much guys. I am relieved that i have support on here.
Ive been having siezures for 6 months but they ll said it was stress because i have depressio,ptsd,pdd and anxiety.
I collapsed in the middle of the road whilst taking the kids to school and was referred to the neurologist. I even collapsed a few days days ago whilst ceaning out the anomals and one of the snakes slithered away-lol, fiund him now though.
Im confused with the things im not allowed to do........but also confused with the treatment side of things - complimentary therapies has been mentioned.
I'd love to take up martial arts as I have anger issues brought on by the depression - am i still able to do that?
Im sorry tp bmbard you with all these questions.
xxxxxxxx
He started meds straight away today and have to have more tests, another scan, eeg and something else.
I am on keppra-only a small dosage atm till they work out how they react with my mental health meds.Have to see a specialist nurse-she sees young females more than most.
Ive been having siezures for 6 months but they ll said it was stress because i have depressio,ptsd,pdd and anxiety.
I collapsed in the middle of the road whilst taking the kids to school and was referred to the neurologist. I even collapsed a few days days ago whilst ceaning out the anomals and one of the snakes slithered away-lol, fiund him now though.
Im confused with the things im not allowed to do........but also confused with the treatment side of things - complimentary therapies has been mentioned.
I'd love to take up martial arts as I have anger issues brought on by the depression - am i still able to do that?
Im sorry tp bmbard you with all these questions.
xxxxxxxx
He started meds straight away today and have to have more tests, another scan, eeg and something else.
I am on keppra-only a small dosage atm till they work out how they react with my mental health meds.Have to see a specialist nurse-she sees young females more than most.
RobinN
Super Mom
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My daughter has tonic clonic seizures, and she is a competitive figure skater. I don't see why you can't take up martial arts. Just let the facility know what to do in the event that something occurs, or just wait until it does (because it may not).
With your mental health issues, has it been suggested that your seizures might not be epileptic, but something that is labeled psychogenic non-epileptic seizures? It still is a brain "malfunction". Neurofeedback is a great complimentary or alternative therapy that is showing great results with PTSD, depression, anxiety and seizures. My daughter worked with a neurofeedback practioner for about a year and we both saw signs of improvement. You might want to read over this site to learn more about it:
http://www.EEGInstitute.com
With your mental health issues, has it been suggested that your seizures might not be epileptic, but something that is labeled psychogenic non-epileptic seizures? It still is a brain "malfunction". Neurofeedback is a great complimentary or alternative therapy that is showing great results with PTSD, depression, anxiety and seizures. My daughter worked with a neurofeedback practioner for about a year and we both saw signs of improvement. You might want to read over this site to learn more about it:
http://www.EEGInstitute.com
travel bug
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Martial arts
Hi Vikki,
It sounds like you’ve been through a lot. I hope you are able to take martial arts classes. I think martial arts are very therapeutic both physically and emotionally. I was really into it when I was younger. After being diagnosed myself a few years ago, I really wanted to work off the nervous energy and get back into shape so I started practicing on my own. However, my seizures originate in the area of my brain near the left motor cortex, so the sharp punching/kicking motion which turned out to be one of my triggers caused me to have a seizure.
BUT, that was just because of the origin of my seizure activity. If yours start elsewhere in the brain, it probably wouldn’t be a problem. If the more vigorous martial arts don’t work for you, you can try Tai Chi. It doesn’t look like it would be as satisfying, but I found I could do it without risk and still get most of the benefits.
Best wishes!
Hi Vikki,
It sounds like you’ve been through a lot. I hope you are able to take martial arts classes. I think martial arts are very therapeutic both physically and emotionally. I was really into it when I was younger. After being diagnosed myself a few years ago, I really wanted to work off the nervous energy and get back into shape so I started practicing on my own. However, my seizures originate in the area of my brain near the left motor cortex, so the sharp punching/kicking motion which turned out to be one of my triggers caused me to have a seizure.
BUT, that was just because of the origin of my seizure activity. If yours start elsewhere in the brain, it probably wouldn’t be a problem. If the more vigorous martial arts don’t work for you, you can try Tai Chi. It doesn’t look like it would be as satisfying, but I found I could do it without risk and still get most of the benefits.Best wishes!