My story, plus some questions.

[DevonMax]

Well Hello everyone! Since my time as an epileptic may be coming to a close (for now), I figured I'd post my story as well as some questions and things that I'd love to see if anyone else feels the same way about and the like.

Well first off I'm a 20 year old male in college. I am/was a diagnosed epileptic schizophrenic (with some depression and adhd thrown in for good measure). The depression and adhd has been around for a while, but the things like epilepsy and schizophrenia started the middle of 10th grade. Now being as this is an epilepsy website, I'm going to focus on that.

Now to start out I have/had complex partial seizures. It all started on a ride to get some food, and I remember getting in the car, then I remember being at our destination, just like that. At first I shrugged it off, thinking I may have just been day dreaming or dozed off or something, but as it continued, I knew something was up. Now being interested I kind of took this into my own hands to try and figure out what was happening, also because I'm incredibly anti-social and shy, so it took me a while to bring these things up to anyone (unless they were there when one happened) and even if I did, most people didnt believe me anyway. It took about 2 years to get me on any medication, I went to a couple neurologists within that 2 year span, but they dismissed it as if nothing was wrong. The final neurologist I went to at the end of my senior year of HS couldnt diagnose me (and still doesnt really believe I have them to this day) but I needed the meds to be able to drive to school. He gave me a 4-day EEG (actually keeping me an extra day to see if he could catch anything) meanwhile he actually gave me half my dose of my meds during the test, so it was all for naught. (And just my luck I had a small seizure the day after I got home). So I was back on 200mg of Lamictal, which worked.

During the 2 years of having seizures though, I had some hilarious stories I heard from the people who were around me at the time, like me locking customers out of the toy store I worked at :roflmao:, or scaring people who were around me, while also having some bad like having one while riding a bike and falling off while "waking up" out of it or throwing out freshly made food for animals at an animal preserve I worked at. But it also got me closer to a friend of mine who has Grand Mal seizures, which was nice.

So this summer, It marked the 2 year since I started my seizure meds, and I wanted off all of my medication. (this also included my Seroquel but back to epilepsy) And after another 3 day EEG, in which they didn't give me my medication like they were supposed to, I walked out, and haven't taken my medication since. Its been 2 months since I've taken my Lamictal, and still no seizures. I'm not allowed to drive until December-February for obvious reasons.

That is my story so far. Being a scientist, I was always happy to have been gifted with things like epilepsy or schizophrenia, because I was intrigued by them and their symptoms. I miss the interesting (and sometimes funny) stories and things that came out of them. And as much as I do miss it somewhat, I will admit I am glad its over (for now, cause I know they may come back) especially now cause I'm off my medication, so that's not a burden or a worry anymore, and I can go out and do what I want without worry of having something happen. Stay positive and make the best of everything!

Well there! That's my story, sorry for the length, feel free to question me about anything, or comment or criticize. I'd be glad to hear about your experiences too! Thank you for listening!

 

[Fedup]

DevonMax

I really am not sure what to say. I think you are crazy and need medical attention, who would miss epilepsy, not me. And I defiantly with out quistion am not happy to have it. Honestly how could you miss it. Sorry to disappoint.

 

[CQ:)]

Well Hello everyone! Since my time as an epileptic may be coming to a close, I figured I'd post my story

Hi DevonMax.
Having epilepsy is a serious medical condition which affects the lifes of anyone who has this condition & can also affect their loved ones (who not only have to see us have the seizures but often put up with side effects from the medications). Unfortunately living with epilepsy isn't as easy as waking up in the morning & thinking wow I haven't had a seizure today this must mean I don't have epilepsy anymore.

So I wanted to know, has anyone had any similar situations? In which they had epilepsy and then been treated or "cured" and missed what they had, if so how did you deal with it? Or is there anyone who likes having what they have? I mean I know it sounds crazy (poor choice of word?) but still.

There is no known cure for epilepsy but just ways to help control the seizures whether it be medications, neurofeedback, diets, surgerys. It is possible for a person with epilepsy to go months or years seizure free before they suddenly start taking seizures again. I am an example of that as I had epilepsy as a baby/toddler. I went 21 years seizure free (14 of those years I was off medication) before I started taking seizures again in 2002. After my seizures returned my neurologist tried me on 5 medications, none of which helped completely stop my partial seizures. In the end it was suggested that I looked into brain surgery, I decided to have the surgery & after months of pre surgery testing & evaluations by specialists I had brain surgery in March last year. I haven't had a seizure in over 18 months & am grateful for every day that I am seizure free. Although I tried not to let my epilepsy affect my life too much, I definitely do not miss having the seizures.

 

[Starburst]

I am happy for you because you have been seizure-free for two months. I hope it continues for you. I am no expert on epilepsy, but as CQ pointed out, you are probably still a member of the "epilepsy" club because the seizures can begin again without warning. I pray that never happens to you, but I think you should at least be aware of the possibility. To give you an example, my son's first seizure was provoked when we woke him up from a deep sleep. I did not want to believe he had epilepsy, even when an EEG a year later showed abnormal electrical activity. He was seizure-free for a long time (more than a year), and I questioned the diagnosis of epilpesy and the need to take medication. Well, the seizures are back, and it turns out they may have been there all along as they were happening during sleep at times when I was not observing him (during the middle of the night). In the grand scheme of things, two months is too soon to judge. I do not say this to put you down in any way, but what I would do in your situation is to remain a part of this community and continue to learn and benefit from the information here. There are lots of great tips regarding triggers, diet, sleep, and other matters that may help you avoid future seizures. I wish you all the best.

 

[DevonMax]

DevonMax

I really am not sure what to say. I think you are crazy and need medical attention, who would miss epilepsy, not me. And I defiantly with out quistion am not happy to have it. Honestly how could you miss it. Sorry to disappoint.

Well It was more along the lines of it never hurt me or anyone around me, and considering I am quite interested in them I was happy being my own guinea pig I guess, but I completely understand for most its a horrible condition, and I'm sorry, I didn't mean to disregard anyone like that.

 

[DevonMax]

I am also aware that so to say, once a member always a member, and I am always glad to help anyone out in need of information and the like.

 

[LJ-Bain]

I think you have been through alot and continue to live through alot.
I know what you mean by feeling like you are part of a community. For a long time I felt really alone in dealing with my seizures and wishing that there was someone who could understand what it felt like and what it was like to deal with them. When I joined CWE I finally found people who did understand.
I wish the seizures would go away though so my life wouldn't be as complicated and that I could drive again but at least people here can relate.
THere are many people here who can understand what depression is all about and who have underlying psychological issues. You are not alone there either.
There are also people who didn't realize their strange "spells" were seizures.
I'm sorry that it took them so long to recognize your seizures, especially with all the other medical issues that you have to live with.
I also agree with CQ that you cannot be totally cured. I think of seizures being well controlled with medication, or in remission when they seem to no longer need medication to control them.
I think the only part of my seizures that I have ever "enjoyed" is the hyper giddiness that I sometimes get prior to having one but it sorta gets ruined by knowing how it's going to end.

I'm glad that you feel you have been given a "gift" because the brain certainly does work in wondrous and interesting ways.

 

[DevonMax]

LJ-Bain

I agree, and thank you very much.

 

[DevonMax]

I must say, it felt nice to let that all out, and it means a lot to me to those who took the time to read and comment, thank you all!

 

[Cint]

I am also aware that so to say, once a member always a member, and I am always glad to help anyone out in need of information and the like.

I'll listen to and take the advice of others who do know what they are talking about. I've been seizure free for 14 months at a time, but then they came back like a freakin' monster! So I don't think the advice of a schizo would be appropriate for me. I've had epilepsy for 30 years now and my ups and downs with depression, too, so think I know what I'm talking about. Like CQ said, epilepsy is a serious condition. I've been treated with 10 meds, had brain surgery, and now the VNS and haven't been "cured" of the "spells". So don't be surprised if you start having seizures again.

 

[CQ:)]

Well It was more along the lines of it never hurt me or anyone around me

I think the pain we suffer from seizures isn't just physical pain eg - broken bones, chewed up tongues but also mental or emotional pain eg - stress, depression. I don't think I have ever injured myself in a bad way during a seizure but I didn't particularly like really bad headaches I've have after a seizure or being so tired I needed to go have a nap.

It would be so hard for our family or friends to see us have a seizure & I'm sure at times they would feel useless that they can't do more. When I was a baby I took tonic clonics which my Mum said I used to take quite regularly, of course I don't remember my seizures as a baby but I can imagine it would never have been easy for my parents or older siblings to see me have the seizures.

When my seizures returned my seizure activity changed as I mainly took auras or complex partials. I've done some strange things during a partial seizure which a person not familiar to my seizures might think was amusing or may not even realise something was wrong. Most of my family & friends were aware of what I did during a partial seizure. After I had a partial seizure which was witnessed by a loved one & my mind was clear enough I could see how worried that person would be.

 

[DevonMax]

CQ
I'm sorry for that, I guess I just had a much easier time with mine, and just had more of a positive outlook on all of it.

 

[CQ:)]

CQ
I'm sorry for that, I guess I just had a much easier time with mine, and just had more of a positive outlook on all of it.

DevonMax

When my seizures returned I feel the epilepsy made me a stronger person as I wasn't going to let it ruin my life. I have always coped well with my epilepsy & remained positive when I was having seizures.

Before my surgery I always wondering if the strange feeling I had was an aura or if I will have a partial seizure. I waited 6 months after my surgery before I even considered it a success & was more confident that my seizures were now under control.

 

[JaneC]

Sorry if I'm missing something here but "schizo"? I'm shocked and rather appalled to see that word used, especially in a community such as this.

DevonMax, long may you stay seizure-free. My friend took her daughter off Lamictal some years ago (I'm not advocating that be done without medical advice) and she hasn't had a single seizure since.

I can understand why you might "miss" something that had been a part of your life for a long time but try to enjoy life without them. Sure they may come back some time - deal with it when it happens. Take care.

 

[DevonMax]

Sorry if I'm missing something here but "schizo"? I'm shocked and rather appalled to see that word used, especially in a community such as this.

I completely agree with this, wasn't expecting that either.

DevonMax, long may you stay seizure-free. My friend took her daughter off Lamictal some years ago (I'm not advocating that be done without medical advice) and she hasn't had a single seizure since.

Thank you for your support and I hope in the continuation of your friend's daughter being seizure free.

 

[DevonMax]

When my seizures returned I feel the epilepsy made me a stronger person as I wasn't going to let it ruin my life. I have always coped well with my epilepsy & remained positive when I was having seizures.

Amen to that, ya gotta remain positive and not let it take over and ruin you!

 

[Cint]

Sorry if I'm missing something here but "schizo"? I'm shocked and rather appalled to see that word used, especially in a community such as this.

Schizo-affective disorder is a psychiatric diagnosis that describes a mental disorder characterized by recurring abnormal mood and psychotic components. The mood component may be elevated or depressed, or simultaneously elevated and depressed (mixed episode), and these abnormal mood components alternate with, or occur together with, distortions in perception. For a diagnosis of schizoaffective disorder to be valid, according to current DSM criteria (but not ICD-10 criteria), there must be a period of at least two weeks of psychosis without mood disorder, and these symptoms cannot be due to medication(s), substance use or another medical condition.[1][2]

That is what (schizo) I was referring to. Sorry you misunderstood.

I waited 6 months after my surgery before I even considered it a success & was more confident that my seizures were now under control.

I waited the year before I considered my surgery a success, but to no avail. Seizures can return years later, so just don't want you to be discouraged if it happens.

 

[CQ:)]

I waited the year before I considered my surgery a success, but to no avail. Seizures can return years later, so just don't want you to be discouraged if it happens.

Cint - you know the outlook I had before the surgery. I never wanted to go in the surgery thinking it would completely stop my seizures, just help control them (in particular the auras). I would love to think I would remain seizure free for the rest of my life but I know there is still that chance that I could have seizures again. For now I am going to just keep setting myself goals eg - 2 year seizure free.

 

[JaneC]

Come on Cint, you said "a schizo" in the way someone might say "an epileptic", and on top of that suggested such a being wouldn't have anything valuable to contribute.

I'm genuinely aghast that a person who has a medical condition that is subject to stigma would stigmatise another medical condition.

I am sorry to bang on and I don't was to cause trouble here but I find what you said seriously offensive.

 

[Cint]

Come on Cint, you said "a schizo" in the way someone might say "an epileptic", and on top of that suggested such a being wouldn't have anything valuable to contribute.

I'm genuinely aghast that a person who has a medical condition that is subject to stigma would stigmatise another medical condition.

I am sorry to bang on and I don't was to cause trouble here but I find what you said seriously offensive.

Sorry you find it offensive. I find anyone saying "fit" or "epileptic" when referring to epilepsy as being seriously offensive, and those words are used frequently here and I know many out there don't have a problem with those words. But I do, although I keep it to myself and do not use those words.

What I said was that anyone who says that they only had seizures (only CP seizures) for a few years, and on top of that have a mental illness, then offer advice to those of us who've been suffering this ongoing nightmare (multiple types of seizures), isn't knowledgeable enough to give advice in my kind of case.

Schizophrenia is stigmatised, as is bipolar illness and epilepsy and all are brain illnesses. So I don 't want any of the stigma, either. Bipolar illness runs in my family. I'm the one with epilepsy, and I DO know the stigma that goes along with E. I have had seizures in public and gotten stares, heard rumors, heard whispers, and lost many, many friends and a spouse and my children became distant over the years because of seizures and depression.

So for you to be aghast when you're not the one suffering, is beyond me.