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MichaelK

Sick: Sick of seizures, sick of my life

I don't know how much longer I can tolerate this. My body is telling me it wants to give up. My mind doesn't know what to do anymore.

Comments

Re: Sick: Sick of seizures, sick of my life

I feel your struggle. Even though I have been good living life and all it just happens and then BOOM I get hit with another seizure. I just had my 5th one in 2 years even though my Dilantin was in a normal range. My neuro pretty much gave up and said "I recommend you go here..." and "try this..."...just stay strong you can pull through it. I don't think its your body saing to give up but more your mind...the frustrating effects of everything playing with your head. I thought I was fine and had a tonic clonic in my bathroom and sliced my forehead and had to get 8 stitches so for me at least its more like what more can I take?

Re: Sick: Sick of seizures, sick of my life

Thanks for your response. I am glad you made it through that tonic clonic in your bathroom. Very scary!
Like you, I have been diagnosed and misdiagnosed, told by an epileptologist that I may not have E but another condition. Another "I give up." All this time my meds have been constantly increased along with the different types of meds that I have to take as well. One time I made the mistake of taking my morning dosage with my mid-morning dosage together and I felt like I should have been taken to the ER. I couldn't stand and was seeing double.
There's more, such as my upcoming heart surgery, yet my seizures continue.

Re: Sick: Sick of seizures, sick of my life

A lot of people on this group have gone thru a lot of stresses which make me feel not alone.  I have been in my apt. and had a seizure and woke up running in the neighborhood.  I contacted the Neurologist and he changed in his office and changed medication.  It happened again and changed again and it never happened again.  I had several things happen in my life that a lot of us can say no more...The Neurologist or Epileptologist, nurses, family, friends that support us make things liveable.

I also have problems dealing w/ the respiratory system and at one time cardiac system too.  I learned to contacted my physicians patiently.  He only gives us what we can handle!  ( who stated that?)

I wish you the best on your heart surgery!

Re: Sick: Sick of seizures, sick of my life

peace R.C.   HEY! Michael  remember no angry outbursts BEFORE heart surgery!

The seizures seem to be aggravated about that also ! 

I "FEEL" that bathroom ,also spent years remodeling my bathroom in beautiful porcelain, little tiles ,then got into a funny habit of awaking before my final r.e.m. cycle and sitting on a toilet and going into a panic state then a full 20-30 min gran-mal LOL !  My former spouse started locking the door at night lol so I would walk into the huge ,solid, handmade oak door repeatedly until they awoke LOL ALWAYS  hurting myself on the door BUT never seriously in the bathroom ???  Hindsight ,I should have spent that time "padding" that bathroom not learning tile laying and making lol  SO-LUCKY- BTW I worked every day after those episodes ,whether I was cut,bruised or sore or confused? TUFF or STUPID you decide!

I "FEEL" you  screaming and in fact because of the E-weirdness I "FEEL" it in purple and pink LOL but no joke!

You should know by now that those doc's are not going to let you go into sz. during that surgery , right? if not ask someone! 

Where do I take this ? I could go on and on about all the bad things life has thrown at me and how until recently I accepted them with a smile and always to seem to bounce back with an even bigger smile !

I am really poor at accepting  and facing my issues AND FORGETTING my problems at the moment AND I have no idea WHYYYYYYYYYYYYYY ! BUT I HAVE NOT JUST GIVEN UP! and have no intentions on doing that either WHY? Because then some silly issue like some electrical problems in my brain or something they call ???depression has BEAT ME! before I even figured it out! cheap shot -I like to think I am SMARTER THAN THAT!

WHERE ELSE? Could go on and on with all the bar stories I have about the several 100 stitches I have in my body,head AND how they got there and even how my first gran-mals started LOL that one is scary. Do I end up sounding like a tuff-guy? a survivor? OR A BIG IDIOT? YOU DECIDE?

You have managed to think your way from the northern cold to what you described as the beauty of Japan doing a job you like because you like it . Your screaming now because you are frustrated by your body ,not by any real decisions or fault of your own ,RIGHT! Then why give up over a few simple issues like this !

I had a chat the other night with 3 females under the age of 24 and figured out between the 3 they were each missing a 1/2 a brain and took about 5,000 mgs of pills A DAY! WOW so only a brain AND HALF and enough pills to kill a street addict and they were all still having seizures!!!! WOW !

That made that next 24 hrs of constant freak show -AURA I have been living lately seem pretty MILD ! YOU KNOW WHAT I MEAN - you decide????

Could go on and on rather with the the really good things I have managed to obtain in my life even though I started with nothing and have nothing now I was happy about it. I have no perfect answers but I do understand how simple it all is ! TRUE ashes to ashes -dust to dust for me! our legacy is not much more than the room on our headstones and OUR CHILDREN ! K.I.S.S. principles apply here.

I also believe I told you that I would hold your hand before,during and after that surgery or even through the next seizures you have ,RIGHT! That was and is true and about all I have !

Well actually we would make you something like a homemade card some banana bread and hang out and let you do what ever you needed to do for as long as it took to feel a little less frustrated ! Even though I am a bit frustrated myself ! ME and my DAUGHTER would do that just ? because! and to prove there are still a lot of good ,real folks left on the planet is why I guess lol. 

I am at a cross roads in life myself but will go on and try to keep it straight and simple why? I have no idea right now actually ?maybe for the same reasons I did all the radical things I used to do ,just to be different or to prove them wrong! I guess?

But my own bit of confusion and frustration right now will go on hold WHY? 

Because I AM BUSY HOLDING YOUR HAND - brother-sir-Michael- and as long as we BOTH do not have a T.C. sz. at the same time WE should be O.K.  RIGHT -YOU DECIDE and keep on screaming and acting fidgety if you need to BUT remember that all that frustration causes seizures and heart problems.  Keep it up . Rick Wichita Kansas 

 

 

 

 

Re: Sick: Sick of seizures, sick of my life

i there too i was just told i had epic and my specialist dosent know what kind yet. i spent 16 days in the the hospital with two of those days on life support cause i was having them one after another. i dont remeber anything when it happens i have to be told the stupid er doctors was calling them psuedo seizure when my parantes was telling them to call my doctor. im a excop and now my life is out of control now i have never had to depend on anyone i take 1000 mg of terotol and 100 mg of phenobarb a day and it has me all out of wack. i try talking to the great people on here it helps i do it every day. they know whats you feel like and for that matter me to i struggle dalily with it hit me up and i will listen to maybe we both can learn

Re: Sick: Sick of seizures, sick of my life

I was taking 90 mg. of phenobarbital for nearly 9 years and ended up almost killing myself. Now I am taking a concoction of 3200 mg. different meds, including 800 mg. of Tegretol. If you were still a cop, you would arrest me! lol!
We all need a little humor, no matter how bad my jokes are. Maybe if I was actually sane I would be able to do better.
Seriously, thanks for your support. I try to hold on and talk to as many people as possible here. All of them help me a lot.

Re: Sick: Sick of seizures, sick of my life

Thanks, Rick. I can't begin to tell you how much I appreciate your support. Making it through is trying and only you and everyone else here understand it. As you said, I am frustrated about my body, not about myself. I am trying as hard as I can. You are trying as hard as well and if I can do anything, let me know.

Re: Sick: Sick of seizures, sick of my life

Lol! I love the way you think Rick! Thanks for giving me a big ole Laugh! I so needed that. I'ts good to run across a great humored soul...hang in there hon, sounds like you're a real trooper. I'm calling my daughter in here now to read your post. I think it may give her some encouragement in dealing with her E. She could use some right now.

Thanks!!! Karen

Re: Sick: Sick of seizures, sick of my life

I am right there with ya! I am having a difficult time with medications and not being able to drive. I am 27 and have gran mal and petimal seizures I have had 3 gran mal in past 2 years which isn't bad to some but my first one was 2 years ago and they came out of nowhere. Some days I just feel like I am a burden to others and can never have "my time" or go anywhere without someone taking me. This so far is the only site that helps me realize there are others feeling the same way and I am not alone. Some days are harder than the rest just to get out of bed with the constant worrying of having another seizure, how you are going to get around for the day, what your moods/side effects will be from meds just constant worry and fear. Let me know if you find anything that helps you because I am struggling with everyday life right now too!!

Re: Sick: Sick of seizures, sick of my life

Yeah I hear you. The hardest part for me has been coping with the fact I may have this the rest of my life and it may be uncontrollable. Many neuros have told me it is controllable but a doctor at the Mayo Clinic in Jacksonville said once you are on 3 meds and have seizures on all 3 then their is a less than 10% chance any med would control them. That is what I fear most. I also fear just the effects of the meds--they seem to really change people and I worry if I ever do get off I will not "be the same".

Re: Sick: Sick of seizures, sick of my life

please be strong!!!!!!!!!!!!!!!!

I'm a caregiver to my 4 year old , he can't tell me whats going onhe doesn't talk,  so i understand feeling alone withlife.

Your not!!!  i

I will talk with you anytime.

Keep your chin up

Bobbi

Re: Sick: Sick of seizures, sick of my life

Are you taking the brand name Dilantin or generic? When I was switched to the generic ( 10 years ago, I had a GM) Ever since I have been back on the brand, Im sz free.

Re: Sick: Sick of seizures, sick of my life

I am on the generic version of Dilantin but have been on it for a year and it doesn't seem to be working for me. I have also heard that a dozen new drugs have come out that are more potent which is why I am looking to swtich. My doctor wants to switch me to Trileptal (?) I have tried both Lamictal and Keppra with not very pleasant side effects as I would cry randomly and be overly emotional.

Re: Sick: Sick of seizures, sick of my life

Just stick with it and stay positive.  I had my first seizure at 17 and I'm now 31 and will be heading in for surgery either next month or October for a dense grid placement to find the spot and hopefully be able to remove.  On average I have one a week over a year's time frame.  It is difficult at first but you'll work it through.  Life is tougher not being able to drive, but you'll find a way.  During my first couple years I probably would have been worried about brain surgery but at the moment I'm excited, because I have the hope of eliminating or significantly reducing them.

Re: Sick: Sick of seizures, sick of my life

Thanks. I am trying to stay positive, but it is tough. After 26 years of misdiagnoses I had spenoids last March and they finally found the source of my problem.
My seizures got better after they switched medicines but now they are getting worse again. As I mentioned before, I have accomplished the impossible already. In the past 3 years, I have seen it all go to waste and am now facing both depression and more E. It never ends. Never.

Re: Sick: Sick of seizures, sick of my life

Michael, I just want to let you know that you having meaning. You and the others on chat really helped me figure out what to talk to the doctors about and not to be scared about Addisons e. Keep your head up and think about all the good things in your life. Like your friends on this site! :)

Re: Sick: Sick of seizures, sick of my life

I'm whole-heartedly with you...It is so difficult, this "living with Epilepsy".  I was diagnosed when I was a kid.  Had some petit-mal seizures in my 4th grade class.  I was one of the "lucky" ones because my teacher had a child with absence seizures so she knew right away that I wasn't ingoring her in class.  My parents got me on meds right away.  So, I lived on Depakote and Depakene until I was 17 or 18....right around my first menstral cycle.  It messed up my life so badly, I'm not ashamed to say that I've thought about suicide alot.  I gained ALOT of weight with the Depakote.  So my position in high school was the overweight and "the smart girl".  Two combinations that don't really go together well when you're trying hard to fit in.

My first Grand Mal happened when I started college.  Ya that was a blast!!!  I was lucky again tho because I had my best friend with me when it happened.  Scared the crap out of her, that's for sure! lol

In 2006, my neurologist and I weren't having much luck with getting my seizures under control.  I was at the "max dosage" of Lamictal and was taking Keppra.  Nothing was working.  I'd go a few days, weeks, maybe even months, but I was still seizing (Grand Mals, Petit Mals, and Complex Partials).  So, together we decided to try the VNS implant.  I was so excited because it was touted as this "miracle"...that it would give me control and that I'd be able to get off meds all together (that was the big one for me...I hate taking meds).  I had the surgery but haven't seen any improvement. 

As a matter of fact, I've seen an increase in my seizures in the past few years.  I have an endless battle with epilepsy and depression.  I have a new doc (I moved to Las Vegas 2 yrs ago).  I have only visited him once but I don't really have much faith.  I told him about increase in seizures, not sleeping well, and having more frequency of seizures during my menstral cycle.  All he would do is give me some Ambien.  He didn't check my VNS, he didn't really spend much time with me at all.  His office was crazy busy because there are only 2 docs.

So, here I am.  I'm unemployed. Living in my parent's apartment. Have finally had to make the hardest decision ever, I've applied for SSI disability.  I've never wanted to go the Epilepsy as a disability route but now I have to and honestly, it makes me even more depressed!  Some days, I don't want to do anything.  No going outside or even get out of bed.

I found this site and it is heaven sent---because I see that people are experiencing the same things I am.  Makes me feel a little less "freakish".  I feel I can talk with you all and you'll understand what I'm trying to say.  That's a blessing, it truly is!  Maybe things aren't as bad as I feel they are, maybe I can get some perspection on exactly what Epilepsy does to a person.

You know what I miss the most?  Driving!  The simple pleasure of being able to go somewhere whenever I want to.  Not having to beg for rides.  Not having to wait around for the person to pick me up or drop me off.  I miss that every single day.

I truly hope, MichealK, that your surgery is a success!  I will pray for your speedy recovery.

Everyone, I want to put this out to you all.....Take care of you!  Be safe!  And try not to stress yourselves out! Keri

Re: Sick: Sick of seizures, sick of my life

 

Keri,

Wow, you just duplicated my epilepsy history almost to the tee. (Mine started at 23.) My VNS has not seen any results either. I'm still on to much medicine. The job, driving, everything. Yes, I do get sick of seizures! This site is a good coping tool. As a matter of fact I just signed on because of being over whelmed/depressed. We will keep going though and we will make it through this. Thank you.

Belle

Re: Sick: Sick of seizures, sick of my life

Keri,
Your response was amazing. I am fighting both Epilepsy and depression. Every time I think I have taken one step forward, my body knocks me back. Only the people on this website truly "get it." Other people think I am either feeling sorry for myself or simply beyond hope.
I have fought as far as I can. I have done the impossible by acquiring two Master's degrees and being able to speak a foreign language. I have also been published multiple times as well.
Now I feel helpless because I cannot get beyond the door of my house sometimes. I am trying to be positive and work towards another goal at home. I get tired of it, though. All of what I have done is going to waste.
Thanks for everything, Keri.

Re: Sick: Sick of seizures, sick of my life

Listen... I know I might be young, I'm seventeen, but I do know what it's like. I was accused of having a learning disability before I was diagnosed because I was having so many absence seizures. I was offically diagnosed at fifteen. I've tried many medications, I've skipped medication doses as well because I wanted to be "normal". Only left me with scars and stitches. I got overwhelmed very quickly because I was balancing school, seizures, and my life in general... I admit I tried to commit suicide and it isn't worth it... if you need someone to talk to PLEASE email me, I've got a good ear and I'm more than willing to listen... windancer01@hotmail.com

Re: Sick: Sick of seizures, sick of my life

Age doesn't matter. We're both tired of this condition. People say to me "don't let it take control of your life" and other simplistic comments. How can I not let it affect me when I can't walk more than 15 minutes from my house without being "escorted?"
This website has been the best thing I have found to help me with seizures, even better than the concoction of meds that I take every day to prevent these from happening.
All I can say is "Thanks" for your response.

Re: Sick: Sick of seizures, sick of my life

Hey there ... Its always one fight till the next.

You're in the right place ... we're all tired more than words could justify

if you need to, and i hope you do

drop a line philipfloyd@mail.com