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kissofbliss

Please Help Me: New To Epilepsy

Well, My doctor believes that I have epilepsy. I am just starting Topamax. I have these "episodes" in the mornings. I usually get my seizures later that night or the next day..or not even at all.  But the last episode I had was so earth shatteringly scary I had to write about it. I'm 20 and I've just started dealing with all this happening. All of this has landed in my lap at once and I am really freaked out. When I had my episode, which I am wondering if it might be an aura, it starts off like static in my head. It sounds like a shovel scraping lightly on a snowy wet pavement. Then I usually lock myself in the bathroom to catch my breath and tell myself that none of this is real. That I need to get a hold of myself. That is when the worst part comes. I see everything including my body in super fast speed. Like everything is a movie being fast forwarded. And I am trying to keep up with it. Usually there is a small part of my brain that I can control and hear and calm until the episode eventually stops, but this time was the first time it disappeared completely until it eventually went faster and faster until I felt like my brain was going to explode and boil. It was so frightening. I had never experienced anything that scary before. Usually I am scared but not like that. Please help me and tell me what you think. All of this is new to me. I've dealt with passing out and shaking all my life, but now it is getting worse and worse and I am very frightened. Plus with being a senior at university it is very difficult being tired and confused all of the time. Thank you for helping and listening.

Comments

Re: Please Help Me: New To Epilepsy

it is a very strange sickness it only gets better  shakes headaches times of blankness memory loss but medice does help

Re: Please Help Me: New To Epilepsy

One thing I would advise is not going into a bathroom to hide out.  If your seizure was to generalize (turn to tonic clonic) a bathroom is not the place you want to be.  Go lay down in bed or on a couch.

Re: Please Help Me: New To Epilepsy

Hi Im a senior in college getting ready for another degree. I started having my seizures when I started highschool so it's almost the same aspect where your life is changing along with your brain. 

I completely understand where you are coming from! feeling helpless and not knowing what to do. One of the last seizures I had I dont know what it was, but all I can remember is being on the floor hoping I wasn't going to drown in my own saliva.

If you still have the auras think of it as a blessing in disguise and get to a spot where your body is safe! if you're completely passing out no warning then you're having a tonic clonic which is what I generally have, and they aren't fun.

It took me 4 meds to get where i am now so think positive. It's trial and error which is the sucky part!

 

You are more then welcome to email me if you want to talk.

candi_angel_2004@hotmail.com

Re: Please Help Me: New To Epilepsy

I had my first seizure when I was 19.  I was on Dilantin for awhile, and then tried the alternative route, herbs and vitamins, which didn't work.  I agree with getting enough sleep.  When I first started have seizures, (grand mal) I always had them in the morning before I ate and usually only one or two a year.  As the years went by they actually started to increase, I found a good neuro doctor who tried a few meds, topomax was the absolute worst, or was it the tegretol, anyway Keppra seems to have done the trick.  I am 52 and I don't feel like a vegetable.  I have started running, I eat healthy and try to get good rest.  I have only had two seizures in four and a half years.  I think I only had those two because my medicine got too warm.  I keep it in the fridge for the most part. (live in Arizona!).  I wish you well, I have a husband who has stuck with me through it all and it can't be easy for him.  We are fortunate that I found something that worked without the crazy side effects.  Ask your doctor about Keppra.  We all wish you well, there are different ways of getting through this, one of them is talking to others who also have it. 

Re: Please Help Me: New To Epilepsy

 

 I had a similar experience where I felt like my body wipped around my living room @ like a 100 miles an hour and could not stop. Once I felt I was levatating up to the ceiling off my bed. I would ask your Dr. to put you on a trial of Keppra & Lamitical I am sz free on these meds since 2006...................Topamax gave me flu like symptoms and a metallic taste in my mouth.

 

Amy

Re: Please Help Me: New To Epilepsy

Bathrooms have a lot of stuff that is very hard and you might hit
your head.  It's better to sit down or lie down before you fall
down.

A tip on you meds I usually leave them on the side of the
sink so I remember to take my pills and remember if I have all my
meds.  Since you might not remember being a busy student.  I
think you should tell your friends what to do if you have one so they
do not hurt you or themselves trying to help you.  

Tell
them first remain calm, remove you from dangerous objects, roll them on
their side if possible so they do not choke on drool, do not put
anything in the person's mouth there is no way a person having a
seizure can swallow their tongue, time the seizure if it takes longer
than 5 minutes or the person is not breathing and has no pulse
afterwards call 911.  If they know what to do with you then they
will be less afraid.   This site has an excellent rescource
on seizure first aid so tell your friends and you family to look at
it.  Once they know then they will be more comfortable with it and
if you do have one then it will increase your chances of surviving
it.  They need to know because if they don't know then if you have
a big one  then they won't know what to do. 

 

Question has anything very traumatic happened to
you?  Eg death in the family, getting mugged, shot at, stabbed or
bonked in the noggen by a heavy item?  

Also  what do you do if someone has a seizure in a swimming pool?

Throw in the laundry

Sick joke but thought you'd think it was funny.         

Re: Please Help Me: New To Epilepsy

i have had e all my life and it has progressively changed as i aged cuz your brain chemicals change is what my neuro told me in my 20s when i started having tonic clonic instead of just abcesce siezures. now 49 i have uncontroled e for the last 5 years though i was told some people it gets better in the 40s, some worse, some stay the same. what you are discribing sounds familar. except i lose my hearing during it, it feels like i am falling fast into a black hole or some thing slowly the sound goes away till there is nothing. and your brain feels all wierd like. then when it goes away the sound wooshs back and i am all dizzyand headachey. i also get what i call brain storms which feel like a electrical storm deep in your brain. have you had eeg or veeg done? now that shows surface brain activity, the deeper in your brain the more the activity is what researchers have found over the last 3 or so years, it might be longer but thats when the articles start that you can find. i would definitely talk to your neuro about this. some say they are psuedo siezures or fake siezures that are not real but your subconsious mind makes them. also you say your doctor believes you have epilepsy, that  another reason why i asked if he ran a eeg, is he a neuro? topamax has symtoms that are hard to get use to. confusion is a big one. if it is interfering with your school work, tell him and ask to switch to something that doesnt effect the brain so bad. ask him if lamictal would work for you since most people i have talked to say they think clearer on it, i spent the last 2 1/2 months being switch to it from zonegran and i can think clearer, though i am still on keppra and they did reduce my kolonopin which slows your thought process. i dont know if any of this helps, but the most important thing is to have a good neuro, the best is a epilepsy specialist neurologist that you trust.  good luck and God bless.

banffgirl 

Re: Please Help Me: New To Epilepsy

i have had e all my life and it has progressively changed as i aged cuz your brain chemicals change is what my neuro told me in my 20s when i started having tonic clonic instead of just abcesce siezures. now 49 i have uncontroled e for the last 5 years though i was told some people it gets better in the 40s, some worse, some stay the same. what you are discribing sounds familar. except i lose my hearing during it, it feels like i am falling fast into a black hole or some thing slowly the sound goes away till there is nothing. and your brain feels all wierd like. then when it goes away the sound wooshs back and i am all dizzyand headachey. i also get what i call brain storms which feel like a electrical storm deep in your brain. have you had eeg or veeg done? now that shows surface brain activity, the deeper in your brain the more the activity is what researchers have found over the last 3 or so years, it might be longer but thats when the articles start that you can find. i would definitely talk to your neuro about this. some say they are psuedo siezures or fake siezures that are not real but your subconsious mind makes them. also you say your doctor believes you have epilepsy, that  another reason why i asked if he ran a eeg, is he a neuro? topamax has symtoms that are hard to get use to. confusion is a big one. if it is interfering with your school work, tell him and ask to switch to something that doesnt effect the brain so bad. ask him if lamictal would work for you since most people i have talked to say they think clearer on it, i spent the last 2 1/2 months being switch to it from zonegran and i can think clearer, though i am still on keppra and they did reduce my kolonopin which slows your thought process. i dont know if any of this helps, but the most important thing is to have a good neuro, the best is a epilepsy specialist neurologist that you trust.  good luck and God bless.

banffgirl 

Re: Please Help Me: New To Epilepsy

I am about to see about getting a VNS myself. I have had E since I was six. I just turned 48. I cannot help but wonder if your seizures are caused by your hormones I have read that when a woman goes through perimenopuse it can excerbate a medicle condtion she already has. Ask your neurologist whether your seizures are affected by your hormones. The neurologist who treated me for over 30 years thoght I was going into perimenopause well before I learned I was.

Faith49

Re: Please Help Me: New To Epilepsy

hi there

i'm sorry to hear about your recent onset of epilepsy - though there is definitely help. The only advice for now I can offer is what banffgirl did - find a GOOD neurologist and let them take care of you. I'm not sure how the public vs private health system works in the US, though in Australia I have had one from both sectors. I know the public system is there to provide for the community (here it is free), but my teenage epilepsy didn't get any better under the public system Neurologist. After switching to a private neurologist (A/Prof Cecille Lander, for those in Brisbane), my life started to turn around. It cost my parents a bit at the time but it was definitely worth it.

I didn't need any contact with her until 2 years ago when I had a seizure after 10 years of not having any. Once again she helped put my life back on track, ie sleep, diet etc - but that's another story.

 So I encourage you to try and get a good neurologist who knows what they're talking about and trust them.

k

Re: Please Help Me: New To Epilepsy

I know it must be so frightening. Hopefully, the medication will start to get these episodes under control.  I also believe that what you are describing are seizures and finding the right medication is really trial and error. The fact that you do not lose consciousness indicates that these are probably simple partial seizures.  You also mention that you can see your entire body in superfast speed.  Many times, people who have these seizures have out of body experiences, yet their sense of awareness remains intact.  This sounds similiar to what you are describing.  Have you had an EEG done yet?  If so, was there anything showing on the temporal lobe?  Just curious as it sounds very similar to things I've gone through the past year.  If it's any consolation, I'm also on Topamax and it's controlling the seizures very well.  You just need to get to the right dosage first.  Just to note, Topamax can make concentrating even more difficult so just be aware of that.  The other thing I found is that Topamax did not make me tired like other drugs did, so that's a huge plus.  Hang in there and keep in touch.

Re: Please Help Me: New To Epilepsy

I understand what you are going  through and the symptoms you described are a little like mine. I was diagnosed with psychogenic non-epileptic attacks after being sent to a hospital who deals w/ seizures and they video taped all the seizures I had for a week and then gave me output when they had enough information to go on. I was on alot of medication like keppra and topamax and this hospital took all  meds away to see what the cause was finding out the seizures I have are caused by stress and past events that had happened in my life. It got worse after my mom died at 61 yrs old four yrs. ago and thats when my seizures got out of control. Topamax is very good for migraines too. So where both new to this but I hope I helped a little on your concerns.

Re: Please Help Me: New To Epilepsy

Kissof,

I am also a senior in college, and I just had a grand mal after not having one since junior year of high school.  I know how you feel--I was in denial that I even had epilepsy for six years.  This was shown in the fact I did not take my anti-convulsants, tegretol and depakote, on a daily basis.  My depakote level finally got so low that I had a grand mal seizure lasting about four minutes and had to go to the ER. 

I beg of you--please don't do what I did.  Epilepsy is manageable and treatable, and you are blessed enough to be able to get help.  If you're struggling coming to terms with your epilepsy, you might want to talk to a close friend or counselor about it.  You might also want to inform your close friends at the university about your seizures and what to do--I've spent all this week doing that, making sure my profs know what to do in that situation. Also keep track of your seizures in a seizure diary.   Good luck! 

Re: Please Help Me: New To Epilepsy

My 20 year old son sounds like you.  He had one seizure last year after several auras. All year while away from home he hardly ever took his drugs.  He has had no auros or convulsions again. Now I found out he hasn't taken any since he's been home from school in May.  He does not believe he has epilepsy.  (I just posted my story-the long version).  I guess I was thinking he'd never have one too if he hasn't by now, but you said 6 years later you had a seizure?  He will see his doctor in 3 weeks.  I want to see what he has to say, but my son wants to take his meds 2 weeks before just to fool the doctor.  I go with him, so I will be up front about it.

Re: Please Help Me: New To Epilepsy

I was on Topamax and it had me seeing things. It sounds like what your experiencing could be the side effets of Topamax. I had to go to the hospital and come off of Topamax. I was seeing myself out of my body. Seeing myself as another person. I would becareful on the topamax. I came cose to death on it. Topamax also had me losing my memory. It effected my vision, my speech. It's a strong drug. Please be careful.

Re: Please Help Me: New To Epilepsy

I have been with Epilepsy for 28 years and let me start off by saying that Topamax is a weird AED. I did some research on that after a couple years on 200mg twice a day and the side effects of it with little help and found that it drains your blood of anything else you are taking except for one or two different prescriptions. If you go searching google for information on your Anti Epileptic Drug and Epilepsy itself specifically the type your Dr thinks you have to get more information you will more likely feel more comfort due to knowing more about yourself and what you maybe facing and needing to do instead of having to trust your Dr to find it all out. You can print it and take it to him or even be able to do it yourself if approved correctly and find a very global facility to help yourself with this to end it quickly if possible. I wish you nothing but the best of comfort, luck and success with the most information you can find (use the Scholar tab on google too)  and God be with you in all our hearts and prayers with anything you may need as that is what we are here for.

Paul J. Bugbee "you always have a friend" just gimme a shout

Re: Please Help Me: New To Epilepsy

I guess the real question is...did these episodes start before or after beginning the Topamax?

Re: Please Help Me: New To Epilepsy

I can understand where you're coming from. I was 19 when I first started having seizures. I have been diagnosed with complex partial seizures. I'm 21 now and a junior in college. It took a couple of tries to get the meds right, but eventually I ended up on Lamictal, and I've been doing great when I take care of myself. Keep talking to your doctor about what's going on so if any changes need to be made. Once you find the right medicine and the right dose things get better. It took me 3 drugs to get there, but things are a lot better now. Just hang in there. 

If you want someone to talk to, feel free to e-mail me at Sandiesmanagerman@yahoo.com

Kevin

Re: Please Help Me: New To Epilepsy

There is'nt much more than I can add that has'nt already been said.  except don't keep it quiet if you have side effects or it gets worse keep in there there's plenty of people looking out for you.  Remember if your not happy with your doc theres plenty of others.

Good luck and best wishes

plopdan u.k

Re: Please Help Me: New To Epilepsy

I'm sorry you are having such a difficult time and welcome to the
group.   The first thing they are going to do is an EEG which
isn't as scary as it sounds yet isn't much fun.  They glue a bunch
of wires to your head and have you do things, flash lights at you and
all kinds of things and then expect you to sleep.  I say put them
through it  and get them to try to sleep.  Then it's on to
the CT or MRI.  The CT isn't that hard just keep your eyes closed
if you tend to be nervous in tight places just imagine yourself some
where you aren't scared of.  Or if you tend to  get motion
sick or confused.  Best thing to do in CT is to close your eyes
imagine you are some where else. 

 MRI's are like
being nailed inside a drum with an IV in your arm and a guy who is high
on PCP banging on it and it will erase your credit cards if you bring
them into the chamber.  I'd say ask for some ear plugs and if you
are claustraphobic then close your eyes.  They need you to remain
motionless for both tests so urinate if you need to before hand because
it will take 45 minutes to an hour to complete the test.  I don't
know about you but I don't think you want to hold it that long. 
You'll need to take off your jewelry, glasses, cellphone and surrender
anything like a pocket knife.  

Then if all these tests come back clean then the doctor could order a video EEG.  

I
figured if you knew what to expect then it might help you be less
scared.  Also you should create an episode diary so you can figure
out what is triggering your episodes and you may be able to avoid
it.  Good luck and remember you aren't alone in this.  

 

 

Re: Please Help Me: New To Epilepsy

just another victim of epilepsy, james

   I am also somewhat knew to epilepsy also.  I have auras alot.  I can relate to the super fast speed, in addition though my auras include very loud noise a awful taste in my mouth and my hands shake severly.  when i have an episode I am so scared i just want to drop to the floor curl up in a ball and hide.  Get the feeling that im outside myself and watching what is happening to me.  Im on dilanton wich seems to be an ecellent help aside from it destroying my teeth and gums.  I have found that going into a darkroom with no noise helps me cacth my breathe and focus enough to go to my cave.  A mental hidding spot.  I know it sounds odd but it helps.

Re: Please Help Me: New To Epilepsy

I wish i could say i knew what it was like to have an aura, but i don't, i simply suddenly have a seizure, at times i think it would be a good thing to have an aura, so i would know it was coming, but after reading what you go through, my heart simply goes out for you.  There isn't much more i can add that the others have not other than learn to use your aura to make yourself safer, in other words if you know that within a certain amount of time from the aura you will be seizing, lie down somewhere safe, notify others around you that can stay with you and help keep you safe. Learn to control your epilepsy in whatever manner you have to.  I agree with the others, if you don't like what one doctor tells you, find another, sometimes multiple heads are definately better than one, especially when they are dealing with your head.  Don't let exhaustion get you down, just dedicate more to sleep than you normally do, I know it is hard, I have been there as have many others, unfortunately you have been given a disorder that causes you to have to  make better decisions about your lifestyle and if that means getting more sleep at night then that is what you have to do. I wish you the best of luck and god bless you

Re: Please Help Me: New To Epilepsy

Hi,

 I am 38 years old.  I have had symptoms for some time now of seizures.

in April 2006, My 7 year old was learning golf and whacked me in the head with a 4 iron golf

club.  It knocked me out.  although its funny.  I have been experiencing complex partial

seizures.  I hear a loud peircing high pitch in my ears and black out. I then am no able to

see, with out seeing halos, That maybe a aura.  I also get very numb in my hands arms and

neck and head and then shake uncontrollable.  I had 7 infront of Dr. s On May22,08.  I don't

really remember to much, except it took a week to get my wits about me.

I was just diagnosed with epilepsy and am on a med called, lamicatal.  Its only been a week since

I've been on it.  I work in the med feild and its so important to take the meds as prescribed and

at the same time every day.  Make sure you eat good and healthy.  exercise and get destressed.

make sure your pottasuim is on level too.  I am scared but I figure . hey,  I got through the last

ones. I am just gonna focus on health and look out for the warning signs and live.  I agree with

sleep . you have to get rested but you also have to be active. 

Re: Please Help Me: New To Epilepsy

welcome to our site.......we are all in this together...so u have plenty of help here.....i know how the aura's feel and yes it does stink....i wish you nothing but the best in the future.....take care and god bless......

Re: Please Help Me: New To Epilepsy

Sorry to hear about your troubles... No doubt, you've already read about the many forms of Epilepsy. But just in case you haven't done so already, please see your doctor and insist that you get a full EEG and a conclusive diagnosis from a specialist. There is a possibility that these are non-epileptic seizures (NES or sometimes also called PNES). Don't rule this out as a possible cause, even though many hate the idea of there being no 'physical' cause to the seizures. The only way to be sure is through a thorough EEG or VEEG evaluation.  In my case, the AEDs I was taking for TLE actually caused tonic like NES seizures! It took a VEEG evaluation to find that out.

Topamax affects different people in different ways. For some its perfect, for others, the side effects are terrible. If you find trouble with it don't be afraid to go back to the doctor and ask to try something else. 

And the advice of not going in the bathroom is very good. You don't want to be locked in somewhere, and certainly not in a confined space with a lot of hard objects if you should seize.  

Good luck,

Drewmo 

Re: not really new to epilepsy but...

hi everyone! its nice to know im not the only one that has epilepsy,

i have six brothers and two sisters and not one of my family has epilepsy apart from me :(

all i remember before i have an epileptic fit is starting to feel really ill in the stomache and my head and eyes go really dizzy, then after a few moments i have black-ed out and hear the soft sound of my mum's voice asking if im okay. im only 15 and currently not had a fit in over 8 months, but as everyone knows : your always worried about the next time you have a fit. i feel really sorry for my family as i cant really have fast flashing lights around me, so at christmas mum has to get the slowest ones possible or the ones that dont flash at all.

thanks fo rreading my little story and i will leave comments on others :)

Re: not really new to epilepsy but...

 You say that you can't have flashing lights around you. What about going out into the hot sun when the sun rays are coming down strong. I have to stay inside. I have had a few Grand Mals because of that. Now I am more aware of it and stay inside.

Re: Please Help Me: New To Epilepsy

I know how you feel.  I am fairly new to epilepsy myself.  I have been diagnosed with the condition for three years, but my seizures recently changed from the absence seizure to a combination of the grand mal and absence seizure.  I know how you feel.  I am in my second year at college and being tired all of the time makes it really hard to get anything done.  I have not been able to figure out my aura, so I usually just have the seizure.  I am sorry that you are having a hard time.  I know that it can be very scary as well.  Just always take your medicine and get rest; this will help the medicine help you.  I have also found that exercise can help take away some of the fatigue.  Keep your chin up.  I wish you the best of luck.

Cfiddler

Re: Please Help Me: New To Epilepsy

I'm brand spankin' new to the epilepsy seen too.  I'm 44, and my doctor tells me I was born with generalized epilepsy which he says is hereditary...only, as far as I know, no one in my family tree ever had it....except me.  Anyway, no aura's, no warnings, just lights out, seizure, indefinate suspended drivers license, lot's of medication, unsure future.

I'm curious though, does anyone else out there have fibromyalgia??  I was diagnosed with that 12 years ago, research is also finding a lot of neurological ties involved, and I have been on Topamax for migraines for several years already - had the seizures right through it.  Anyone else having similar experiences??

Thanks for the time and input -

Re: Please Help Me: New To Epilepsy

i have fibromyalgia, i seem to have something different to everybody else, i had like a mini stroke, but they tell me no evidence on scans it was a stroke, they think it was a seizure, i am now waiting to have a EEG, i dont understand auras, but i have had a couple of spells, where i feel cross eyed and had to sit down until it passes, head feels light ( but heavy also)

Re: Please Help Me: New To Epilepsy

Hi Kiss. I am sorry to hear about your "episodes." Like you I am new to epilepsy myself.  I am 27 and had my first seizure right after I turned 24 in August 2005.  I was working part time at my college snack bar when out of the blue I went into these extreemly violent convulsions. I have no idea what happened because I do not do drugs nor am I very into alchohol.  After I had my first one I had an EEG done but nothing was found. After i had several The docs finally decided to put me on a VEEG to find out where my seizures were coming from. They put me in an Epilepsy Monitoring Unit at my local hospital and stopped my meds as a way to induce a seizure. After being there for a few days I had a very small staring spell that occured in my Left Temporal Lobe.  I continued tyo have seizures with no cause  and each time i had one my meds were raised. I was put on Dilantin and Lamictal and the Lamictal stopped my Grand Mals (convulstions). My last one was November 2007, but This past year 2008 I started having the hormonal seizures right b4 I had my period about every other month. I was then put on Keppra. Like you I have no idea how mine started  all of a sudden  once i hit my mid-20s although i was told thatit could be a chance that I had problembs with my nerons all of my life but nothing happened until my brain reached its adult peak and strongest point. I am currently on 500mg Phenytoin, 500mg Lamictal, and 2000mg Keppra. This past November 4th I had surgery done to my Left Temproal Lobe to remove the neurons that are causing my seizures. It is January now, and so far i am doing good. My last spell was in September 2008 which was just one of my small twiching and staring spells where i become out of it for a couple of minutes. Like you it was strange that tings like this would happen once you hit your 20s I hope things will be good for you and you have good luck fining a cure for you. So far my surgery has done me well.

Take care

Anna

 

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