Anybody have guilt trips?

[petero]

It has been a year after surgery, but a bit over a month after another seizure now. Involving surgery for a long time I’ve been having guilt trips as to how it could have been that something I was doing was causing my seizures due to brain damaging behavior.
At the time, I never did anything like taking hard-core street drugs, though I was smoking pot around diagnosis time. (a long time ago I had done ecstasy and LSD and but mostly just smoked pot during my life. I quit drinking over 15 years ago now due to being a recovering alcoholic but my diagnosis for epilepsy now has been about 8 years.
I have guilt trips though that my seizures totally originated from something I had done, and not that they just came from WHEREVER. I have a massive feeling of guilt that people with conditions like AIDS have a better reason for what I’m feeling due to it being a condition of origination, but that epilepsy isn’t.
Does anyone else have guilt trips like “if only I had not done _____, then I wouldn’t have ever terrified friends, family, society by having seizures”.
Granted, there has never been any option for me to have seizures - where in the opposite sense, after diagnosis with AIDS someone could go on a dangerous sex frenzy which could pass the disease to others. But I have growing feelings that I’ve never had options - and even never even had a real understanding as to what my seizures were like. Part of me wishes I could have seen a LOT of my seizures on video. I do have one single video, but I’ll even have crazy ideas that the video had been faked by the hospital I was in at the time. Akin to “quick! Let’s give him drugs that’ll make him have a seizure so that we can give him a lobotomy!” type of psycho thinking.
I still have bizarre ideas as to the passage of ideas and as to realizations regarding realism and crap like that. I have feelings like reality has been being withheld from me in order for me to “come to terms” with thoughts that’re being withheld from me... why haven’t things been explained to me? I just need some factual definitions and explanations! Like people and circumstances are being withheld. WTF?




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[FemaleN2iron2]

You need to talk to your Doc. This could be a side effect from the surgery. Don’t feel guilty, we all make mistakes and bad choices. Using some drugs here & there I don’t think can cause Epilepsy, or else there’s be A LOT more people with it. They don’t know what caused mine, it could be a number of things, or some screwed up genetic factor. It is what it is for us. We just have to learn to live with it like people live with diabetes, or lupus, or any other condition. Make the best of it. I refractory and I fear my only option will be an RNS implant. My husband is against that major surgery, but what choices do we have. I feel alone a lot. I am a mother of a 11 yr girl who’s been traumatized and now suffers from PTSD because of me. Are you going to die mom? Is the question she carries daily since she was 4. It’s tuff and sometimes feels impossible to be an epileptic, but what choice do we have? I try to be thankful for what I do have. When I get really low, I just cry, and write down my feelings and then suck it up because someone depends on me. I try to volunteer to help others in need ( senior citizens) to take the focus off my problems. Coming here and talking to others who understand will help too. T.

 

[Porkette]

Hi petero,

Did you have a wada test before the surgery? If you did that will tell you for sure what the cause of the seizures was. Just like you I had surgery done to reduce my seizures . My biggest problem is my family won't accept me and they have turned away from me except for my cousins and my aunts and uncles. It hurts but you have to keep booking and don't let it get the best of you.
Years ago when I was a kid in my early teens I was blamed for my seizures and my parents pushed me out the door to a boarding school for 3 yrs. so I was away from my family for awhile.
I have a brother in law who worked for Garth Brooks, Collin Raye, Track Akins, and The Dixie Chics as an audio engineer and he blew his job with Collin after getting into drugs and drinking. To this day he won't admit he has any problems and he's in his 50's living off his dad. You aren't doing that and you made yourself stop doing the wrong things so you can't blame yourself. You admitted that you had the problem and you stopped it. You should be proud of yourself.
If you feel that your Drs. are keeping things to quiet tell them to fill you in on all that's going on and if they don't transfer to a different group of Drs. personally I think this is going on because of your surgery. My surgeon told my the neurons would be more active after surgery for a few months and he was correct this could be what's going on with you. I wish you the best of luck and May God Bless You!

Sue

 

[petero]

Hi petero,



Did you have a wada test before the surgery? If you did that will tell you for sure what the cause of the seizures was. Just like you I had surgery done to reduce my seizures ..... May God Bless You!



Sue

As a matter of fact I DID have Wada prior to... and by Jove I feel like I’ve just been unveiling some things about it too - suspicious as to whether or not some things have actually occurred, like I’m realizing things in reverse, like I’m realizing core things regarding the test as to different people, one person in general - a woman who I have feelings for. Some ideas about some things!




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[resaebiunne]

No, my seizures came out of nowhere for no reason. Nothing *I* did caused them to happen. The same for my hallucinations and mental health issues in general.

If you think your health issues are your fault, you need to see a therapist. And I've brought this up with you before...

 

[FemaleN2iron2]

That’s ridiculous, I had several Neuro’s evaluate me but not give me an EEG and then tell me I needed a therapist or flat out ask me if I was a hypochondriac. I gave up after a few years of seeking help and then 8 years later my primary physician scheduled an appointment with a Neuro without my knowledge and HE ran an EEG after really being sympathetic to me and my long years of symptoms and I had two during the test. He then told me I had seizures. So don’t listen to one Doc, try another one until someone takes you seriously

 

[resaebiunne]

That’s ridiculous, I had several neurologist’s evaluate me but not give me an EEG and then tell me I needed a therapist or flat out ask me if I was a hypochondriac.

I think you are mistaking this thread.

This thread is NOT about diagnosis.

This thread is about post surgery symptoms and side effects. Read the thread again.

In my case, I am referring to post seizure event effects, both on myself and family. My seizures have had profound effects on my family!

 

[Lisa36]

To Petero:
After I had the surgery several years ago, yes, I DEFINITELY had what I would also agree can be described as guilt trips. While my outcome from the surgery was successful other than tons of constant simple partials, I felt that I suddenly had obligations to prove myself because I was now “cured” of what I had before the expensive operation. This is also while having a next-to-nothing verbal memory after the left-side surgery. I let other people’s criticisms of my shortcomings, both before and especially after the operation (particularly my parents’) sink in and destroy my self-confidence. As they would constantly say, “if you only ____ more when you were young, you would be much better off today.” I don’t know if others are contributing to your doubting yourself, but do NOT go down the same path I did for several years after the operation by letting others criticize you, especially after all you’ve gone through. And that includes yourself, which I unfortunately did to myself for many years. You have no reason to feel guilty. It was not your decisions that caused the seizures, but rather an underlying condition making you more susceptible to seizures.

 

[petero]

To Petero:

After I had the surgery several years ago, yes, I DEFINITELY had what I would also agree can be described as guilt trips. While my outcome from the surgery was successful other than tons of constant simple partials, I felt that I suddenly had obligations to prove myself because I was now “cured” of what I had before the expensive operation. This is also while having a next-to-nothing verbal memory after the left-side surgery. I let other people’s criticisms of my shortcomings, both before and especially after the operation (particularly my parents’) sink in and destroy my self-confidence. As they would constantly say, “if you only ____ more when you were young, you would be much better off today.” I don’t know if others are contributing to your doubting yourself, but do NOT go down the same path I did for several years after the operation by letting others criticize you, especially after all you’ve gone through. And that includes yourself, which I unfortunately did to myself for many years. You have no reason to feel guilty. It was not your decisions that caused the seizures, but rather an underlying condition making you more susceptible to seizures.

Yeah guilt trips totally - both due to feeling like my epilepsy being my fault. For example my mom especially can tend to just identify it as my SEIZURES and not as my EPILEPSY, and that seizures can come from things other than epilepsy, and I only have one video of myself to grasp the “external perspective”. She often seems to identify it as being worst for the person observing rather than the person experiencing epilepsy.
Another thing I try to point out to her is that she happened to have a surgery on her knee that wound up flawed causing her knee to not bend much at all. So she has a hard time bending her knee, but just complains about her knee, but doesn’t have a grasp of my feeling horror as to surgery on my f**king BRAIN. Swell, I don’t have seizures anymore, but it also feels like I’ve had “library shelves” removed (neural material), but have stacks of books laying around that I have to rearrange onto other shelves, onto tables, into the hands of active nerve cell librarians (this is a visualization concept) - and not to mention there are the twinges of “horror books” strewn through there in the borders of neurons to various degrees which feel like they may be reason for Rxs I’m still on for a while... parts of things don’t even have believability to them, which feel to be due to an absence of mind due to seizures... I wish I had a lot more video of my seizures... ughhh I need to think through some things for now... depression




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[Topcat]

I had them I still have them, for all kind of things. for me that's just a (sad) part of life.

 

[petero]

I had them I still have them, for all kind of things. for me that's just a (sad) part of life.

I’ve been trying to grasp a concept that I’ve been under some sort of treatment dealing with mental grasp of some fucked up behavior I was in, an occurrence regarding postictal mind purée - some kind of fucked up hypnosis or some kind of thing even. Life totally messed up in my mind. My mind is gone. Someone pleased by destroying me.



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[Music36]

You know, you could possibly have been born with epilepsy and not even know it. I didn't get diagnosed until I was 21, but I was born with it. How do I know? When I had a tonic-clonic at age 21, my parents told me I had a tonic-clonic the day I was born. I had complex partials all my life, but they were misdiagnosed as anxiety attacks by my doctors because intense fear is my aura. I was never sent to a neurologist until I had the tonic-clonic at age 21 and then I found out I was having complex partial seizures all those years.