new to epilepsy and this forum..at age 32

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Jenka

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Hi everybody!


I'm very new to this community as I just recently started getting epilepsy attacks in January this year and at age 32. As I have grand mal attack during my sleep and live alone the first one was spotted in the beginning of February 2013 with suspicion of having one before as I bitted my lip hard in January during sleep (I though I had such a bad nightmare). I went to the neurologist, MRI was clean but EEG showed good chances of the attack to reacure. I decided not to try drugs unless it happens again and unfortunately it did - a week ago. Also during my sleep. I remember having nightmares again during sleep and feeling notious during sleep. The attack was spoted later in the day when I went to sleep because of feeling notious and a friend was nearby to witness. After the attack I had troubles with my memory for a half an hour (couldn't remember who and where I am...). Before and after the attack I also had deja-vu feeling and was feeling natious (this was the same as before, when I had other attacks). But this time it is also different...After the attack this strange feeling of different smell and taste stayed. Food, even water tastes different (not smokey, but not so tasteful) and everything smells different. Not like it used to. And I can't stand strong smells. Why is this happening and why isn't it going away? It feels like I'm living in a movie and it's a very scary feeling.. My neurologist just prescribed Keppra to me and said "Interesting" when I mentioned this feeling and that it is ongoing. Does anybody have any advice for me? What is happening to me?
 
Jenka

First let me say welcome to CWE. From my point of view and mine only get of the keppra as for advice the best advice right now is for you to sit back with a cup of tea and say I am going to live my life. Try to read some more of the threads that others here wrote and you will start to understand epilepsy, that is the most important thing, understanding epilepsy and realising you have it.
 
Hi Fedup!

Thank you 4 quick response. I'm still in shock that this is happening to me, that is true. Information reading here is very valuable to me. Everybody is telling me I should start taking medication, but reading about the consequences and what they cause in addition realy worries me. I'm trying to avoid taking them altogether. What alternative medicine have you find useful in coping with epilepsy...
 
Jenka

That is a question I cannot answer as I take medications. There are side effects to all medication but you have to decide what you are willing to live with for the best seizure control. I can only imagine what the shock is like but I do know you need to learn all you can about epilepsy and a good place to start is right here where the people will tell you the truth about epilepsy and its effect but most important they will give you a shoulder to cry on when needed and a lot of support. The other thing you need to do is start a diary in which you will keep track of your seizures (times they happen, what you remember before and after a seizure) and what new food you eat or anything and eventually it will help you identify triggers, before all that you need to realise and accept you have epilepsy, this is a must and by no means easy and remember this is still your life, epilepsy does not rule your life.
 
Hi Jenka, welcome to CWE!

As Fedup says, the medications can have side effects which are unpleasant or intolerable, so I understand why you might be wary of them. On the other hand, uncontrolled seizures can progress if you don't get them under control. That means they can potentially happen more often, last longer, and or become more severe. For that reason it can be worth giving the meds a try. Many people have no problems or serious side effects, and that could well be the case for you.

When I had my first tonic-clonic (grand mal) seizure, I really wanted to avoid meds too. I tried a few times, but I wasn't able to remain seizure-free. Currently my seizures are controlled (nearly 5 years) by Lamictal, and the side effects are tolerable.

I hope you can find a med-free approach that works for you. there are a lot of good tips found here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ including the diary that Fedup mentions. Some people have found that dietary changes help with seizure control, and it usually can't hurt to to take a good long look at ways to improve your overall health and decrease any kind of stress. Info about alternative epilepsy treatments is at this link: http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Best,
Nakamova
 
I totally agree with Fedup and Nakamova. I think I would prefer to put up with the medication than end up having uncontrolled seizures. I was diagnosed at 53 yrs old 2 days after Christmas 2012 so I am still coming to terms with it. Without the medication, I have the olfactory hallucinations 24/7 and they are quite intolerable. I have never had a tonic clonic but I do have absence seizures along with a lot of other annoying things happening. I would also prefer not to take medication but then again, I would prefer not to have epilepsy. Welcome to CWE Jenka :)
 
Gday jenka ,

It isn`t good when you start getting siezures ( i was around 40 ) i was a bit upset too !!!! , i am on tegretol and i don`t feel quite as good as i did prior to E but it is alot better than having siezures , stress can be a trigger so try not to worry too much about E the worry only makes you stress more and possibly may have more siezures , i used to stress alot ! i now think "bugga" epilepsy and get on with life , i was having strange nightmares and i found that if i left the radio off while sleeping it reduced the amount of nightmares to almost zero .

i wish you all the best .
 
thank you. yioure right, but im so nervous because going from dr to dr is a killer.i cant take any more. im willing to go off the dilantin--i know its hard, nbut i dont want anything else. my husband is worried ill lose my liver if i cont on with dilantin, but i have a few high enzymes now. its the peourofery thats making my life a hell because it literally changed everything. my mom died last year from alzeimers so i already have 2 bleeding ulcers from that, but i will try my best to stay calm. you are so right about that triggering off more seizures.i want to get on with my life. i dont need this.i do appreciate your reply.
 
Welcome to CWE and you can really learn a lot from reading past posts on here. From what your describing it sounds like a seizure. Though take what I say with a grain of salt, I can't replace a Dr.

I just know from personal experience, when I woke from a pretty bad seizure I would be very confused. Like you explain, dreamlike. The feeling fades but its very freaky, Deja Vu is common with seizures as well.

Not sure if this helps, but i've nocturnal seizures that I was totally unaware of. I had my girlfriend tell me, and I would feel really sick to my stomach. Almost like I woke up with the flu or something. Hope the keppra helps and best wishes.
 
Don`t stress amilie , we do it by the way we think , don`t watch alot of tv , do gardening ect , take the dog for a walk , even do some community voluntering , you have to get out and talk to people , get out of thinking the wrong way creating stress , i sure that your mother would want you to not stress too much and have a great life .
 
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Hi and welcome,

I take Dilantin along with Clonazepam.

I have been on Dilantin for 42 years except for the times Dr. have tried other medic. I couldn't tolerate any of the others and have a quality of life.
 
thank you both for your encouragement. im going to take your advice. i do volunteering work for alzeimers.my mom died from it last june.ive just been under a lot this year. i call it MY YEAR FROM HELL.im just scared. these drs are scaring me. they tell me that because a few enzymes are high ill lose my liver. things were ok. i was even accepting the neuropathy until this idiot specialist told me all this. 4 days of hell i had--i cant take keppra or (iforgot the name oif the other one) i dont want to change.id love to be off dilantin too, but the dr wont do it.it gets to me how a dr 25 years ago caused all this and its ruining my life now, but i wont let it.i usually strong, but this year finally got to me after that specialist told me my liver isnt normal., etc. i feel ok. ive seen too many drs. tues i see my own and thats it. sometimes too many drs cause too many problems and they dont know me like i know me.
 
Dear all, thank you for your precious advice, support and encouragement. It's much easier to cope with this when you have people in your life that understand you. I'm so happy I found this forum and support group :)

MauyThaiFighter, it seems we have very similar attacks, do you also experience funny&different taste in your mouth and smell after the attack and how long does it stay? I have a different smell and taste for a few days after and it just doesn't want to disappear.

A lot of people is commenting that this attacks could have appeared due to not coping well with stress. What's your take on this? That would mean that psychotherapy would help greatly to reduce No. and power of the attacks.
 
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different symtoms

i was just thinking and wondering-----i havent had a seizure for no of years now. i read these blogs and i see my symtoms were so different. i just collapsed and the next thing i knew i was told i had a grand mal seizure.i never saw it coming on.i never got them in my sleep, but when i did come to, it took a while to remember what i was doing before and my legs felt weak for at least 1 day. the dr told me it was normal for my legs to feel that way.i sometimes wasnt aware of where i was. that took some time too and gradually i started remembering. i even remember i was with my husband in the car many years ago and the next thing i heard was him telling me i had a seizure right in front of him. he was somewhat shaken up because it the 1st one he witnessed. and he was scared for me. i find the drs scare you more.i only realized something would have come last week when 1 neurologist took me from 3 dilantins to 2. i was on keppra too. forget that one! as soon as i took the 3rd dilantin i was ok. again.i stopped everything on the approval of drs except for dilantin. thats all that agrees with me.my life was really ok till this idiot specialist told me about the liver enzymes being too high. he knew nothing about me, never asked too many questions, and i did tell him im difficult with meds. he tells me to take keppra. it was a nightmare. i wouldnt have listened to him, but he told me my liver wasnt normal because the enzymes were too high.he told me if i dont change i could lose my liver. then another dr told me the enzymes arent too bad--just slightly elevated and i have no liver desease. every dr was telling me something different. it was my neurologist who sent for the so-called specialist because she felt hes more experienced in neuropathy. i just wish they all left me alone.another dr told me to do nothing---nerves rejuvenate on their own. theres no guarantee, but it takes a long time. he also said liver, but he said to do nothing. ---to leave everything as it is.im seeing my neurologist tomorrow, but im making it clear i wont switch meds, i cant.i cant put nboth me and my husband thru anymore. i dont want to. she has a habit if you dont agree youre too nervous. im thru taking that too. i really had a YEAR FROM HELL. and i wonder if she could do any better. ill tell her that because i had enough of these drs who dont nknow what theyre talking about.im always polite, but im so fed up already that all i have to hear 1 more time from her is how nervous i am. my mom died from alzeimers this year. i have bleeding ulcers from that ordeal.i inherited my moms arthritis. id like to know if she could do better. im doing my best.people tell me im strong. --how im still here after this year.then ill just switch drs. i know 1 more. --the one who told me nerves rejuvenate on their own and to do nothing. he never took me off dilantin or even suggested. and my husband and i feel hes the best one to deal with if she starts up again because im thru taking her nonsense remarks already.
 
I can't recall if i had odd tastes, my memory has been pretty awful. But I can't forget the smell I would get. Yeah a lot of the things you mention line up with me as well.

On Keppra a lot of my seizures were probably due to stress. I think having a good neuro psyche or just a good psychiatrist might help. Even for the sake of just venting to someone. And if your in a fog they can kind of remind you of things, thats what they help me with the most I think.
 
still thinking

i agree--the right neurologist is very impt. the problem with her , as i mentioned, is if you say anything right away, her answer is youre nervous. thats not a proper answer. she knows me and she knows the year i had.i dont élike to take meds unless i know what im taking because im so difficult with them. thats why i ask questions. its my body and its my right to know. a few years ago a neurologist was going to give me med and i asked what it is. he told me its none of my business because i wouldnt know the chemicals anyway. i was still polite, but said---im not questioning your ability. i ask because i know myself and i dont qwant to go thru a bad reaction to something that i know may not agree with me.again he told me to moind my own business. i didnt take the med and i didnt see him. to me thats not a good dr. what was he afraid of- if he was doing everythig right, why not answer? why get so obnoxious. when i had my neck operations(i had 2 of them).---theyre big operatios and i dont just let any old surgeon cut into me. i asked questions and they were great. they showed me the mri and explained everything. then i felt confident.i had the surgery and things couldnt have been better. they were always around. they know its a tough surgery. they explained the pros and cons and were available. i never call drs unless its an emergency. my drs know that about me. i dont bother with silly things, but this is a big change---i have a right to know because i had 4 days of hell that could have been avoided.here was a dr who never met me before and gives me meds that i cant even begin to explain what i went thru. im really glad i found this group. youre all a really big help to me.im starting to see that the dr who said to just leave everything in place and let the nrves rejuvenate is the best. he didnt want to rush into things because he said---why put you thru something we can avoid? we can always do it. he has tremendous experience and also said the neuropathy is from the liver and leave things alone--he even told me about a patient of his who had this and everything rejuvenated by themselves. it took 3 years, but nerves take time to heal and he never changed the dilantin either, so i have an appt with him june 14. my husband and i both feel hes the one to solve this. i feel like cancelling tomorrow,but i think its impt for her to know what happened by someone who knew nothing about me and gave me meds that made me so sick i didnt know what world i was in.i was really fine. i was doing ok.even my children were amazed at my strength after the year i had. then she does this and scares me to death.now my husband thinks we should cancel tomorrow and just wait till june 14 and change drs. i agree, but the big question still is---should i keep tomorrows appt at all or just forget her?! sometimes a dr is good for awhile and then you reach a ooint whewre you do have to change because other things come up where they really upset your life that i was scared to death. if i can ask you----what would you do? would you go to her anyway or just keep the other drs appt.
 
I would go with the doc that you feel is right for you , myself i wouldn`t go to the doc tomorrow i had a GP doc that said a few things to me and i never went back and the new doc has been great .
 
Thank you

i discussed this with my husband and i did cancel the appt. i didnt right about what this so called specialist was saying. he was making me so nervous and i dont need that. i have another appt with the dr i feel has more experience and never panicked or wanted to rush into changing anything.he told me to wait. the neuropathy will be there in a moonth. this takes years to go away anyway. its 1 year already and i was doing fine till i met that specialist. he scared me so that i thought i was going to die tomorrow. i dont need that, together with everything else i had this year. so on june 14 ill see the dr i feel in my heart will know what to do. hell know the meds and i feel better with him advising me. this specialist, from all the research im doing, is so wrong about so many things.he never met me before, he doesnt know what i can and cant tolerate. sometimes there comes a time when you just outgrow a dr and i really think im doing right.thank you again.
 
Welcome Jenka! I too had one, aactually my 2nd ever grand mal also in my sleep when I was 31, just before my wedding. I did have one when I was 18 also in my sleep grand mal, tonic clonic or whatever they're calling it now. I had one then, on meds for a while, tests done, never had one again, then stopped meds. Then, what 13 years later, another one, I'm guessing stress was the cause. I had that one, put on Dilantin, then Dr switched me to Keppra. I just want you to be cautious of how you are feeling while taking the Keppra. If you start to feel down, lost, alone, depressed in any way, PLEASE TELL your DR you want OFF!!!! I was on it for a few months and I wanted to die. Literally!!! It can be great for some people but I guess I'm that percent, which seems a lot more common than they claim!

So sorry you have to live with this now, but it will get better, especially if you just keep on your medication... I had another one in February, same kind, same time, but I had forgotten to take my Keppra for a day and a half, and I had it. I have been fine since, for the most part. I am on Dilantin now, it keeps the seizures from happening, but I do feel a little off, tired. But not depressed, which the Keppra did to me. Best of luck my dear and there are plenty of people to listen here to whatever questions you may have.

I don't remember any weird tastes or anything before or after, but I do know that after I feel exhausted and body aches for a few days, and I feel kind of like in a dream state for a few days. Just relax and rest after the event and try to keep your head up!!! There are so many people out there who live with this and it doesn't have to rule your life!!! :) Best wishes!!!!
 
unbelieveable!

i just read what you wrote and i have to tell you---i took valium 25 years ago for a few months. the dr didnt tell me i have to go off gradually and i never took sedatives before so i had a grand mal seizure. ive been on dilantin and it works well for me. i never had a problem until last year when i developed periferal neuropathy. i have arthritis, so i thought at first they go together, but my dr told me it doesnt. she didnt know why i had the neuropathy. she brought in a specialist who id supposed to be a GOD in this area. he tested me and said its coming from the liver and i have to get off dilantin and go to keppra.im not too good with meds, but i had 1 day on keppra. i wasnt in this world. i was so deathly sick.i was depressed from it. the specialist told me i dont have a normal liver. im not stupid. i started asking questions because i take cholesterol med. thats a statin and it goes thru the liver too. he told me i can take that. only 3 enzymes were tested and 2 were a little elevated. i asked IF I CAN TAKE A STATIN THAT GOES THRU THE LIVER, WHY CANT I TAKE THE DILANTIN? THE LIVER IS THE LIVER. he had no answer except to tell me i can take the statin. he also said he has no time. i started doing research like never before. only 3 enzymes were tested. the big ones werent. how can he tell me i have liver desease if he didnt test anything more?!how can he make a comment like that? i was so upset for about a week. he made me think i was dying. i was supposed to go to my neurologist tomorrow. since she brought him in, my iinstinct was not to go. my husband and i are seeing a neurogist we saw a few months ago who told me not to do anything because neves have a way of healing themselves, he said its from the liver, but he never took me off dilantin.he said you have to wait and have patience.were seeing him june 14.im back on dilantin and im fine. sometimes you just outgrow a dr. if i see her, shell only want to put me on keppra and i wont do it.i stay on dilantin.now i know i made the right decision in not seeing tomorrows dr. i will never change. my body couldnt take it.i had ataste of it. not only that, but 1 neurologist took me from 3 to 2 dilantin. i felt funny. i knew something was coming. right away i took the 3rd dilantin back and the funny feeling left. i saved myself from a seizureand this was only 2 hrs after he reduced the pills.what kind of drs are some of these! we know ourselves best.ive heard horror stories about keppra. im finally calming down after my ordeal.i also learned to follow my instincts. theyre usually pretty good.
 
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