Lost and in pain

Diseases & Conditions Epilepsy
1
  Hello everyone-
 
     my name is rob, and i'm 30 years old. i suffer from uncontrolled epilepsy and it's destroyed my life. i feel VERY alone, afraid, and like i've reached my wit's end... that's why i came here. i'm hoping that if i tell you my story, perhaps someone can relate, and give me some advice.
    i had my first tc seizure at the age of 26, and it completely blindsided me. i did come to find after learning about the disease that i'd been having small partial seizures for a few years before that, which myself and my primaray care doctor thought were small panic attacks. and then... one day on my way to work i had a seizure while i was driving my car. i don't remember anything between leaving my house that morning, and waking up in the back of an ambulance. a witness called 911 and told the paramedics what happened. i was sitting at a red light (thank god), and i guess i just slumped over, started convulsing, rolled into a light pole, and passed out. when i woke up, i was strapped down and there were all these strange faces hovering over me. needless to say i was scared to death. when they told me that i had a seizure, i didn't believe them... i thought i was dreaming. now, it's turned into a real nightmare that i can't wake up from.
   i have a very strange seizure pattern, and i haven't responded to any of the many medications i've been on. i've felt very neglected by the neurologists that i've seen, (they never have much time to talk and they never tell me anything to make me feel better). i've lost my job due to having seizures at work and absenteeism, i can't drive, i've lost most of my friends, and i feel very frightened and alone. before this came along i had a job that i loved taking care of animals, and owned my own dog walking and pet sitting service... needless to say i've lost both of those and not having a job, (while it sounds nice to most people), gets old very quickly. especially during the winter... i used to be a fairly social person with quite a few friends and now i stay in the house usually, rarely talking to anyone. out of humiliation, fear of having a seizure out in public and possibly hurting myself or someone else, and just good old depression...
   as far as my seizure pattern goes, it's very odd. i call it my male period. Once a month, without fail, i have symptoms of deep emotional turmoil and irritability for about a week before, and i have both partial and tc seizures for one day towards the end of that week. it usually starts with partials in the middle of the night, which i never remember but my girlfriend tells me about them, and both partial and tc seizures for about half of the following day. i sleep for most of that day, and wake up the next with all of the after effects... which include loss of my senses of taste and smell, and emotional turmoil. i have a very hard time eating and usually lose 8-10lbs. each month when it happens. what i mean by emotional turmoil is, things that would usually not have an effect on me , have a huge effect on me. things like a sad story on the news or things that i think about in my life, can have me crying like a baby in no time. the same goes for laughing at things i wouldn't normally laugh at and having no control over it. i am just a wreck. these symptoms, including horrible insomnia, usually improve over the course of the following week, and i'll finally feel somewhat like myself after that. until the next month rolls around and starts all over again that is...
   does anyone here have a cycle like this? does anyone have the same pre and post symptoms that i've mentioned here? can anyone predict when it's going to happen next? it sometimes comes on the same day that it came last month for me. anyone ever heard of anything like this?
   you know, i'd better get moving on the easter festivities, but i have a lot more i'd like to talk to people about. i'll come back for that, but for now if anyone can relate or help me cope, i'd appreciate it. thanks for listening.
2
HI Rob
I just wanted to say hello. I read this story and it just made me sad. Please have hope. I had my first seizure this past summer. I was 23. It turns out my story is similar to yours. After the tonic clonic seizure, I was in the hospital for three days, they did alot of testing. After I got home I wore a 24 hour AEEG. It picked up seizure actvity at night when I was sleeping. THey started me on Keppra. My Neuro thinks that I have been having absense seizures all my life but no one ever caught them, I was just mix'dx'ed with ADD. They past 5-6 years I was having alot of panic attacks too. Or what I thought were until I read alot, and they seem alot like partial seizures :(
I don't have alot of answers to your questions, I am sorry. I just hope you can find some comfort here. I know I have. I was so scared after being diagnosed. I had to put off nursing school and some friends really showed their true colors after my hospitalization. Take care and hope to hear from you soon. Have a great easter.... Hey, did you ever notice that "that time of the month" for you is when the full moon is out... Check it out. Tracy

 

3

Dear Rob,

First let me say, Your story is one that so many of us can relate to.  You have had pain and your share of suffering.  I hope you can find some solice in the fact that most of us have found comfort in the friendship and bonding in those with similar problems.  Although I have not had tc seizures, I have read about the many people here that have and it has helped me to understand a little bit about what others go thru and maybe a little bit about what I need to do to improve myself.  You don't have to put on your false airs here.  You can feel free to express and vent your feelings to us like you did.  All of us have done it.  Everyone here will give you support.  Come here to say what you need to say.  Someone will always listen to you to support you.  And you can always say something to someone else to support them.  If something really bugs you, don't keep it bottled up.  It's just going to be like a pressure cooker inside you. 

About your initial diagnosis-  I really encourage you to read some of the postings from other people when you have time.  When I did,  I couldn't believe how people had similar experiences as mine.  It made me feel like I wasn't alone in the world.  And you aren't alone.  That's why you should come back.  I too had my first seizure in my 20's.  It wasn't something that I realized at first.  I mean, who is going to say to themselves, " oh, I must be having a seizure" when the first sign is NOT falling down and shaking all over the place?  I thought I had wierd indigestion with out of body experiences for several years.  People brushed it off as me just trying to get attention.  Now I'm going to  have my left temporal lobe surgery in a matter of months - it's been a long road for me, but I can some light at the end after 25 years of all this.

About your seizure pattern-  I know mine was somewhat related to my period and seizures were often in clusters of 4-6/day. It took me a day or so to recover from the following confusion but your pattern I'm not familiar with.  Hopefully other people have something to say regarding their own experiences.

About your Life/Depression/Crappy Things in General- Others here have lots to say about that.  That's one of the biggest reasons why we're all here.  On the outside, I may have to put on my "happy face" for people, but I'm glad that I can come here to complain/vent about things that bug me... I can ask for some advise...get a (((((hug)))) when I need it...

Life is like a mountain.  The Road will be rocky sometimes on the way up, just put on your seatbelt.  The view's great on the way down.

Come on back, man, we're here if you need to say more...

Glenda :-)

complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d

4

thanks so far... anyhow, there's more. i'm always getting injured during these things, most recently a dislocated shoulder and a black and blue face from falling off of the bed during one. i also have a tendency to get very frightened and violent during some of them, and that's why i'm afraid that i'll end up hurting someone someday. i don't have a lot of money to do things, (i'm on disability), and my injuries keep me from my hobbies... it gets pretty boring around here, and when i'm bored i spend a lot of time thinking and worrying... i don't really enjoy things that i used to anymore. for example, reading. because this disease also robs me of a lot of my memory, i'll read half of a book and have a seizure, and i won't remember most of what i've already read... only fuzzy details. so, you can only start a book back at the beginning so many times. do a lot of you get injured during your seizures? does it rob you of your memory? does anyone get violent, or do and say embarrassing things during them? do a lot of you know what caused you to get epilepsy? do any of you have control over your seizures?

  i spent a week in the hospital for video eeg monitoring and they couldn't pinpoint the exact origin of them in my brain. i've been on about six different meds with no success, and right now i'm on 800mg of lamictal per day.

5
HI. I didn't get injured during the Grand Mal, I was sitting down and didn't fall. I was fuzzy for about two weeks just sleeping it off. I had incontenence. I was embarassed that I did that on my friends couch, but I had no control. When I have paritals I just cannot think straight. I just clench my fists and wait for time to pass, or just lay down and close my eyes. I have not clue what would have caused my epilepsy. I have no family history that I know of (and researched alot). No major or minor head trauma. So I have no clue. I haven't had another TC since July 04. I hated that so much and fear it. But this is my life and I try to just take my meds, get rest, and take care of myself. Do you take vitamins? Did you try the ketogenic diet? There are some alternative therapies you can think about with your Doctors approval. Take care, Tracy

 

6

Hi Rob,

Bummer that you have gotten the injuries in your falls.  The bed- you may have to put something like siderails up to prevent you from falling out and injuring yourself if you have a tendency of seizing in the night. 

Although I don't completely lose consciousness, I do have amnesia of the event during a seizure and therefore I can't do some of the things I used to love doing, like swimming, riding on carnival rides (except the slow ones), and the ski lift.  Climbing on a ladder is out of the question.  But I have learned to compensate whenever I can.  Avoiding dangerous situations has kept me out of really big trouble. (And probably luck).  A bruise here or there is all I've had. 

What I do in a seizure: Violent - I am not, frightened -yes, so bad I think I am going to die. Talk during seizures:  I try to talk, but it's all jumbled up.

When things took a turn for the worse for me a few years ago, and I lost my ability to drive and lost my job,  I was in a state of shock.  I basically just sat at home and literally just cried for the first 6 months.  But, slowly, I came out of it and started to do other things.  It really helped me to develop  other hobbies.  Like you, I loved to read -starting a book was the easy part , it was finishing it that was hard. 

The one thing that I can say about my loss of memory that has worked to my advantage is- when I sit down to watch a tv show with my kids, they moan and groan when they see it's a rerun of their favorite show- but due to my poor memory, it's like a new show to me!

The origin of my seizures comes from a cavernous angioma in the left temporal lobe.  Unfortunately, the 8 meds that I've been tried on  just haven't been the answer that I'd been hoping for.  So, surgery is next for me. 

Tracy (Daisy9980) is a real inspiration for us all.  She didn't give up her dreams of nursing school and it's her positive attitude that helps a lot of us to walk a little taller :-) .  Thanks Tracy.

Don't give up on finding out what's causing your seizures, Rob.  It was 8 years after I was diagnosed with epilepsy that a neuro finally found the angioma causing my trouble.  You have to talk to and feel comfortable with your doctor.  If you Don't, for any reason, it's a good time to look for one that will listen to you.   

Glenda  :-)   

complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d

7
(((Glenda)))
I am doing the best that I can. I try so hard to get on here often to support anyone who may need it. You are great with your posts. You are a great person and glad you joined!
Rob- I hope you continue to post. This forum is filled with very nice, kind, intellegent people. No question is silly here. When you feel low, feel free to vent here anytime. It really helps alot. Take care you two, Tracy

 

8

Mary-

You're so right about seizures messing with your memory.  I wish I had a dime for all the times I forgot something. 

Crossword puzzles? That's a good idea.  I also love the puzzles in the the USA weekend magazine in the Sunday paper called Frame Games.  I think doing anything like that helps keeps those neurons dying out.  I bet your 83 yr old mom is pretty sharp if she can do crossword puzzles.

Glenda :-)

complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d

9
thank you everyone for your kind words and support. it does help somewhat to know that there are others out there who've walked in my shoes and can relate.
anyhow, i'll answer some of your questions... first and foremost, yes i am lucky enough to have a wonderful girlfriend named michelle who breaks her back to take AMAZING care of me. surprisingly, she was one of the very few people who didn't run away from me when i told her of my affliction. we've been together for about 2 1/2 years. she puts up with my grumpiness and nastiness in the days leading up to my seizures, she does everything to make sure that i'm safe and comfortable during and after my seizures, and puts up with my fogginess, grumpiness, and nastiness in the period after my seizures. i do have a tendency to really get nasty sometimes, and since she's the only person around me most of the time, i have a tendency to take it out on her. thankfully, she knows that it's not really me doing this, and that it's the disease affecting the part of my brain that controls my emotions. i do apoligize to her, and she says, "i know it's not you... don't apoligize". she's done so much for me, nasty things like cleaning up my blood when i bite my tongue, and cleaning me up after the few times that i've wet my pants, and she asks for nothing but my love in return. she asked me to move in with her after i lost my job, she supported me while i was waiting for my social security disability to come through, and all this time she's driven me everywhere i need or want to go. she's waited for hours and hours in waiting rooms while i'm seeing my doctors, she changes her schedule around to get me to all of my appointments, and she even calls in sick to babysit me on my seizure days. i am lucky... and i know that, but sometimes it's hard to appreciate what light you do have in your life when there's so much darkness as well.
as far as the rest of my life goes, i live in cheektowaga ny, which is a suburb of buffalo. so, you can only imagine what the weather is like here. i love going for long walks with my dog, (i have a beautiful 8 year old rottweiler named miles) when it's nice out, but when it's cold, and wet, and snowy outside, he doesn't even want to go. i too enjoy gardening and my flower and vegetable gardens keep my body moving and my mind occupied, off of my troubles, but again, that's something that's unavailable during the long buffalo fall and winter. lastly, my passion is martial arts. i'm into both kickboxing and jiu jitsu, but i'm unable to do either due to my constantly nursing injuries, (and my doctor telling me i shouldn't be getting hit in the head, even during sparring). so, you can see how bored and frustrated i get. i find myself watching more tv and smoking more cigarettes than ever before, and it sucks. i'm hoping to do some physical therapy for my shoulder, (which i popped out of the socket and popped back in without even knowing it), and if i get the guts to go be sociable, in public, with people i don't know, and not be embarrassed to tell them that i have this disease and how to deal with it if i do have a seizure, i can at least join the jiu jitsu class which is a grappling art and doesn't involve me getting in the head. it gets so hard, and not being able to see the light at the end of the tunnel is very frustrating.
thank you all again for your words of encouragement and letting me know that i'm not alone. hopefully, having a place to rant and talk to people who can somewhat understand what i'm going through will be a positive step in my life. i will be back with more interesting stories about my experiences with this darn disease, and hopefully i'll be able to help others who are in my shoes as well. thanks again.
10

Rob-

Michelle sounds like a special lady.  How often is it that someone can give so much and not say, " don't apologize".  She must think a lot of you too.  You must be doing something right to have her love you so much!  I hope that you can enjoy going for a walk with your dog, Miles when the weather is nice.  He sounds like he is a good outlet for you.  It's been proven that a pet can help to alleviate stress and help in healing.  A pet  can give so much love and they ask for nothing in return.   

I used to watch a lot of tv and found that I was a zombie after a while and then it made me feel like I was wasting away the day, so I watch only my favorite shows  now and do other things, like listen to music and read the paper, play my guitar ( I get free music off the internet to play) and read a lot.   (I don't do crossword puzzles but I think I'll try that, Mary.)   I like to do things outside when the weather is nice too like Mary and you.  Since I am a fix-it kind of person I find more satisfaction in doing things around the house than sitting sometimes.  

Rob, you say you do martial arts.  That is real neat.  Have you ever done tai chi?  My husband does and he says it is actually a form of martial arts, done very slowly, and takes a lot of skill.  He does it in a class and the instructor goes around the room and if you are in the proper position it appears like kung fu moves in slow motion.  I think there must be several different forms, I'm not really familar with it ... do you know much about it?  Maybe you might be interested in it  since it would be something you would be familar with all the moves already.

Take one day at a time, look straight ahead, keep your head up and keep positive.  YOU CAN DO IT!

Glenda :-)

complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d

11
hello again everyone-
thanks for being so nice and supportive.
1. yes i am VERY lucky to have michelle. the first time i had a seizure in front of her, she didn't know what to do... she was still under the impression of the myth that people can swallow their tongues, so she stuck her thumb in my mouth... needless to say i chomped down on it, and she almost lost it. any average person would have run away as fast as they possibly could, don't you agree? (by the way, most people still believe that you can swallow your tongue during a seizure... when i told a friend of mine that i had epilepsy, he asked if i carry a spoon around with me).
2. i am a crossword fanatic! i spend a lot of time doing crosswords from the local papers, magazines, sunday puzzles, and from crossword books.
3. you are 100% correct about the positive impact that that pets can have on your life. besides miles, we also have three cats that we rescued... two from unfit homes, and one from the local shelter. their names are dave, bones, and ninja. all three of them are so quirky and have their own personalities, and they can always put a smile on my face. as a matter of fact, the cats seem to know when i've had a seizure, and while i'm so beaten up and can't do much but lie around afterward, they're all extra loving, and spend more time than usual with me until i'm better and can go back to playing with and taking care of them. on the same note, miles does the same thing... he's stuck to me like glue and extra protective when i'm in that kind of shape. here's a quick interesting story about him... i usually get up at the crack of dawn, and michelle sleeps as late as she can when she has a chance. now, one morning i was lying on the couch at about 7am in the living room which is up in the front of our apartment, and she was in bed which is way in the back. apparently, i had a seizure and fell off of the couch and michelle didn't wake up. she tells me that while i was passed out on the floor, miles ran to the back of the house and barked, and whimpered, and scratched at the door until she woke up. when she woke up and started to get out of bed, he started jumping around and running from the back of the house to the front, to the back, to the front, and looking at her in a way that she said she's never seen... like he was tring to tell her that something was wrong, and she needed to hurry up and see what it is. she says that he finally got her into the living room, ran over to me and started licking my face, and plopped down next to me until i was awake and aware enough to get up and tell him that i was o.k.. i don't remember much about that day, but i remember that he didn't want to leave my side all day long, not even to eat or go outside to take care of his business. michelle said that she's never seen anything like that in all the time we've been together and she's known miles. he's not a seizure dog so he couldn't warn me that it was coming, but he was certainly willing to do everything he could to save me and keep me safe until i felt a bit better. interesting, huh?
4. yes, i do know a bit about tai chi, but it's never really interested me. it is a martial art, but not quite what i'm into. i'd rather do yoga, but right now with my injuries, i can't do much of anything. i really like the martial arts that are proven to work in real situations or competitions, which muay thai kickboxing and brazillian jiu jitsu are. i'm only 150lbs and i feel that i could defend myself against any sized opponent, simply using the laws of gravity and leverage. with jiu jitsu, you don't try to match strength with your enemy. most street fighters, criminals, and bullies expect the person who they're bothering to stand in front of them, try to punch it out, and in turn get their butt kicked. in jiu jitsu you learn how to take your opponent to the ground, (where most people who depend on strength and punching power are useless). you then use all of your body weight and strength on one part of their body, such as an arm, leg, or neck. you can use all of your weight and leverage to put the most painful holds on the one part of their body, and it's useless for them to fight back. using these techniques, a smaller guy like myself can break an arm or a leg, or choke out the enemy with relative ease and minimal effort. it really is amazing. now, tai chi is more for your mind, as relaxation and meditation. it does use old kung fu moves, but as far as self protection goes, i think it's useless.
thanks for your replies and for listening. i'll be back soon.
12

Hi Rob,

I've been reading your posts and found them quite interesting.

Everything that you have described so far, I have experienced myself. As a result of yuor meds or the condition itself, have you ever had an outerbody experience?

It's hard to explain it but it bugs the crap out of me.
I get this about once a day. I feel like I'm looking down on myself trying to control my actions from above or when I'm doing a certain task, it feels like someone is wispering in my ear and telling me what to do but there's nobody else around or if I'm sitting idle, I feel like I'm doing something.
 
These feelings I've been getting are really starting to scare me, it's hard to describe, my wife thinks it's from stress but I differ.
Could  this be a form of a partial seizure?
 
I've had EP for 25 yrs. but only started getting these feeling about 2 years ago.
I didn't tell my Doc. because he might think I'm nuts.
(Maybe I've been on the meds too long)
 
Now, Re: driving:(I'm not in the medical proffesion so I can only relate to my past experiences)
 
I've had EP since 1979, only had ONE (1) grande-mal seizure since then, all my EEG's showed seizure activity in my lower left tempral lobe.
In in Dec.2002, I pulled in to a Wal-Mart parkinglot and just as I pulled in to a parking spot, Someone must have been looking out for me because I just came off the highway.  I must have passed out because all I can remember is the front bumper of my car (brand new) was "kissing" the bumper of the car in front of me, my car was still in drive with the motor still running. The lady in the car in front of me just happened to be a nurse and she opened my door to see that I was OK and then turned off the engine. She told me to stay put as she had called an ambulance after she noticed that for a moment I couldn't speak and she noticed my medic alert bracelet. I noticed that I was also foaming at the mouth.
 
Since the police were called and a report was filed, I had my licence suspended for an indefinate length of time.
Now I have to get my blood checked once a week so it can be closely monitored before I can get it back. I have to go seizure free for 2 years (controlled by medication).
 
It's like having my freedom taken away from me.
Do you know how humiliating that is especially when you've been driving your whole adult life?
 
That just goes to show you that it stays with you your whole life but can stay dormant in your system and cad hit you at any time when you leaste expect it.
 
This is one main reason why you should stay on your meds. even if you think it's gone.
 
RE: Memory loss:
 
My short term memory is almost totally gone and my recall isn't much better.
It's caused problems with my job too but that's a whole other story. Besides this I have slurred speech and very poor gait and coordination(as well as several other side effects from the meds), people think I'm drunk. I've even been pulled over by the police as DUI until they saw my medic alert bracelet.
 
Re: Stress:
 
I've had Ulcerative Colitis (very similar to CD) and Epilepsy since 1979.
Both conditions are stress related (in my case).
I've had everything under managable control until 6 yrs ago, my 12 year old son was diagnosed with bi-polar (manic depression) and has been puting this family through hell.
 
Then my petit-mal siezures became more frequent(almost daily) from the added stress in the household. 
Then my UC flare-ups started to be more frequent as well and more severe. As a result I had to increase my UC meds, and since this effected the metabolic rate of my epilepsy medication, it has to be increased to the point where I am a walking zombie and afraid to go out for fear that everyone would think I was a drunk. This shows me that there are still so many people that are still uneducated about this topic.
Some people still think that if you have epilepsy, you're possessed by satin.
 
This effected my social life big time and causes depression.
It even effected my personal life.
My own family was embarrassed to be seen with me. I just had to learn to deal with it.
 
In a lot of cases stress is a major trigger for epilepsy, CD and ulcerative colitis, if that flares up then you will have to increase your meds and that can throw everything out of wack.
I thought I was living a fairly normal life but it must be worse  than I thought as my employer of 29 years has put me on medical retirement and I'm only 48 yrs old.
 
Re: Mood Swings:
 
eyes  I've noticed that over the past few years, as a result of the meds that I take, I have been experiencing mood swings-so bad that they're affecting my family. One minute I'm happy and joking around (I used to be the life of a party) and the next I'm mad at everyone.
 
Randy
 
 
 
 
 
 

Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day