Hi there, I had my first seizure 6 months ago, at age 36, total loss of consciousness with stiffening of the limbs. Since then I've had MRI and 2 eegs all of which were normal. I have had a few intense de Ja vu episodes too. My neuro decided it was caused my migraine prevention drugs so I stopped taking them in February and all was well. Yesterday though I had another total loss of consciousness with stiffening of limbs. After the paramedics checked me over I went to an on call dr who says that epilepsy is really the only possible diagnosis. I have an appointment with my own dr on Monday to discuss medication options. I am really quite frightened of the drugs, the side effects sound so bed, yet I'm terrified of having more seizures. Life seems so scary at the moment!
Scared!!
- Thread starter Rachel.M
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julie wishes
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Hi Rachel. Welcome. Im new here as well, but CWE has helped me learn so much. There are people here who know how you feel which is such a relief. In a short while, you will have more posts with lots of helpful information. Try not to be too upset until you have all the facts. Reading on these forums will help you learn so much and hopefully feel better a little. Again welcome. 
Warm welcome to CWE Rachel.
There are many safe alternatives that you in conjunction with the meds can take that will help if the meds have strong negative side effects, and many people do not have negative side effects but many also do, each body is so unique.
Keep a diary and note every out of ordinary feeling, note every de ja vu or anything out of the ordinary, because de ja vu’s are seizures (my Son has these and very strong ones) and these can be a warning to you to get yourself to a safe place. This diary will help you on your journey and will keep you aware of your body and help you explain yourself to the doctors and it may shed light on what is triggering your seizures, stress, emotions, lack of sleep, diet (what r u eating and drinking?), eating on time and on we could go.
Don’t let fear get the better of you. My Son is 26 and has all types of seizures, he is on meds and takes lots of supplements and is in various therapies, he is out there living life, studying, working and for sure not living life in fear, yes some limitations (no driving) but he not letting diagnose Epilepsy hinder his zest for life.
Ask you doc to take a full blood analysis, checking your glucose, vit d levels, in fact a full vitamin and mineral test would be great. Start positive research....if you go on the meds and they have a negative impact, start looking for ways to combat them, I know it can be done for my Son is living proof of it, he takes valporic acid 1300mg and plenty of supplements...
There are also special doctors who manage epilepsy called epileptologist; it would be GREAT if you could be referred to a real epilepsy specialist
The rest of the CWE crew will all be here to answer your questions, lend a listening ear and give you great advise....because so many are on the same journey as you.
You are not alone...please dont let fear get the better of you.
There are many safe alternatives that you in conjunction with the meds can take that will help if the meds have strong negative side effects, and many people do not have negative side effects but many also do, each body is so unique.
Keep a diary and note every out of ordinary feeling, note every de ja vu or anything out of the ordinary, because de ja vu’s are seizures (my Son has these and very strong ones) and these can be a warning to you to get yourself to a safe place. This diary will help you on your journey and will keep you aware of your body and help you explain yourself to the doctors and it may shed light on what is triggering your seizures, stress, emotions, lack of sleep, diet (what r u eating and drinking?), eating on time and on we could go.
Don’t let fear get the better of you. My Son is 26 and has all types of seizures, he is on meds and takes lots of supplements and is in various therapies, he is out there living life, studying, working and for sure not living life in fear, yes some limitations (no driving) but he not letting diagnose Epilepsy hinder his zest for life.
Ask you doc to take a full blood analysis, checking your glucose, vit d levels, in fact a full vitamin and mineral test would be great. Start positive research....if you go on the meds and they have a negative impact, start looking for ways to combat them, I know it can be done for my Son is living proof of it, he takes valporic acid 1300mg and plenty of supplements...
There are also special doctors who manage epilepsy called epileptologist; it would be GREAT if you could be referred to a real epilepsy specialist
The rest of the CWE crew will all be here to answer your questions, lend a listening ear and give you great advise....because so many are on the same journey as you.
You are not alone...please dont let fear get the better of you.
RachelinAZ
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Hi, I am a Rachel too. I too, have only been on the forum, but I have learned so much and continue to learn.
I LOVE what Chaz said.... don't let seizures take over your life. Don't live in fear. I do everything I have always done, except I now take Tegretol twice a day.
~Rachel in AZ
I LOVE what Chaz said.... don't let seizures take over your life. Don't live in fear. I do everything I have always done, except I now take Tegretol twice a day.
~Rachel in AZ
Well I saw my doctor today and he has started me on 25mg topamax. I have just taken my first dose. Trying hard not to be concerned about side effects but I'm still a bit anxious to be honest! Will see how it goes! Thanks for all your helpful posts
nicholas:)
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All meds make you feel 'strange' at first, partly because they are getting into your system and partly because of the anxiety you are feeling. Give them time.
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Hi Rachel.M, just wanted to add my welcome to the others!
The meds can seem scary, but they work fine for many, many people. And if Topomax doesn't work for you, there are others out there to try. Pay attention to how you are feeling, take notes and ask lots of questions -- doing those things can all help you get a sense of how well a particular med is working, and whether it is the right med for you.
Best,
Nakamova
The meds can seem scary, but they work fine for many, many people. And if Topomax doesn't work for you, there are others out there to try. Pay attention to how you are feeling, take notes and ask lots of questions -- doing those things can all help you get a sense of how well a particular med is working, and whether it is the right med for you.
Best,
Nakamova
I have been on Keppra now for around a month and after the first few days everything was fine for me. I too have had 3 random grand mal seizures (over the course of 6 years, two of them being within the last month) and have also had deja vu episodes. I have had a total of 2 CT scans, 2 MRIs and 3 EEGs all of them have been normal. It is odd at first because you almost "want" something to be found in the MRI or EEG so you know what you are battling against. After my first seizure I started having real bad anxiety and panic attacks. After the last two, though, i would not let that happen again. I found the best way to deal with it is to just accept that it happened and try not to worry about it. It will get better over time.