Discussions By Condition: I cannot get a diagnosis.

Can anyone provide some insight?

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Anonymous
  • September 27, 2007
  • 03:58 AM

Here is the history:

_ I was diagnosed with spinal meningitis at only four months old

_ Died 3 times (Stopped breathing for a full ten minutes each time)

_ At the time of 1.5 years old I was freed of the meningitis and ever since have been living with Partial Complex Seizures.

I am 20 now and have major fear of people, have panic attacks all the time, had and always will have zero friends. My driver's license was revoked by the DMV due to having a seizure while driving so under these circumstances I landed a job with a company two of my brothers work at. My co-workers think I'm a freak show and when I talk to them they either laugh and look away or ignore me altogether, unless it's an urgent work matter. The real point I'm trying to get to is that a year ago I went through a self-destruction phase where I pounded the top of my head with fury about a thousand times, including the sensitive spot where they once performed open brain surgery on me to remove the focal scar tissue that was causing the Partial Complex Seizures. The real question I have is what are the long term and residual effects of this type of so-called head injury? Needless to say I live everyday with major brain pain. I never told any doctors about the incident as I feared being institutionalized. The annoying part is that I have three brothers, two sisters, and a dad (Mom passed from 5 different cancers on independence day of 2003 (What an emblematic day to be freed from the incarceration and ***l of Cancer)) who think that I act the way I do to draw negative attention and that I play this psychological word game. Sometimes when I get my constant brain pain and I'm around them I just want to go punch a wall, but when my other personality comes out I'm so-called "normal." Sorry to drag on, can someone please tell me the side effects of blows to the head?

As always your help and insight are greatly appreciated,


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3 Replies:

  • You have my deepest sympathy! You have a lot to be angry about, and you deserve to be treated better by those around you, and more importantly by you yourself. Yoy may well be affected in your brain from the meningitis as a child. You shoud see a neurologist if you haven't already. I know it's hard, but you ned to be honest with your doctor too. He or she can't help you if there isn't a clear picture. There is someone in my life with this problem, a bright, funny, special person who lights up my life. :-) Here are some symptoms you might take a look at: http://www.braininjury.com/symptoms.html You are in my thoughts & prayers.
    aquila 1,263 Replies
    • September 28, 2007
    • 00:40 PM
    • 0
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  • LOL, I can’t remember who the heck I was the night I wrote that message, but whatever the drive was I was obviously anxious and in a hurry. Does anybody out there know a person who has suffered from partial complex seizures or any type of seizures for that matter the majority of their life and recently underwent a head/brain injury similar to my experience? I would really like to communicate with that person and see if we share the same thoughts and feelings because when I try to explain how I feel to my psychologist and neurologist they don’t quite grasp the reality I am talking from and especially with the seizures I don't think it helps the cause (They think I an a drama case and they believe I think I am someone special with these grand new diseases and symptoms no one else can relate to and blah blah blah. The truth is I was once normal and actually had the power to dispel and take control of my negative thoughts and feelings but now the only way I can describe it is my brain is frying on Crisco and it doesn’t take more than 10 minutes from the second I walk into work for my thoughts, self-consciousness, and paranoia to start racing and completely burn me out and put me in a detached, way over paranoid and purgatory world / state of consciousness. And every single time I utter a positive affirmation / reinforcement I instantly get a nausea stab electrical jolt type feeling in the pit of my stomach and I feel defeated like I was just brainwashed into a negative whirlpool of thoughts and feelings (Just imagine having major social fear and every time you try and forget about it or repeat some positive affirmations to yourself you have a blink-of-an-eye instant stimuli that fires off and says “***l with that, this is how you’re gonna feel buddy.” Don’t care what y’all say, it ain’t voluntary, and there is very little I can do about it because the options at hand only make my symptoms worse. Anyway, when I explain that I hear weird distant and faint airplane type sounds in the wall and how it generates a pain inside the left side of my frontal lobe as well as deep cranial spasms inside the middle of my right temporal lobe where they performed the surgery they thinks it's either self-created pain or a n easy way out / escape to mask my real problems like my social phobia and inability to cope with everyday normal life (due to the life and structure I lived under). That's why I'd really like to talk to another victim because I truly believe only the people who suffer from the same condition can even begin to fathom the reality we live in. They are the only one’s who can relate since the people with their normal lives (Don't forget, the people who currently suffer from these conditions where at one point living without them, so they have some recollection of what it was like to live in a normal life with normal consciousness and comprehension) Only we who have to endure the pain of being kicked down everyday and barely making it back up to make it through the day w/o screwing up know that our pain and reality of perception, interpretation, etc. cannot be explained by normal consciousness and perception. All the people out there whom we interact with every day(In my case anyway, don't know if others have it this bad) think we are extremely annoying because of our voice, think that we are always up to something or playing a game because of the way we come across trying to explain things on a normal level but are always at a loss for words and start second guessing every word that pops up in your head because you can’t withstand the self-consciousness and paranoia without coming across in the wrong way and conveying yourself as a freak show. Please if any of you out there suffer from constant frustration and agitation from dealing with a person in a similar case, please cut them some slack and know deep in your heart of hearts that 9 times out of 10 they are just trying to keep up with the rest of the world and get some kind of acknowledgement that they are on the same level with those who they self-reflect on. One bad blow-up can reverse and completely eliminate a month’s worth of dedication (When I say dedication I mean some of these people including I go brain-dead and have an inner “voice of doom and gloom” repeatedly messages to them that “there is no way out of the depths of mental ***l and purgatory and you are destined to fail.) in making themselves perform up to par. They use a lot of mental energy just trying to keep up on the level, which is also why a lot of us say we are always burnt out (Our minds have a mind of their own who have a mind of their own). One negative scolding or stab in the back can reverse a month's worth of energy and time trying to transition themselves back to normal. And honestly part of the reason I was hitting myself is I thought the Lord didn't like me and wanted me to suffer so every time someone broke my line of consciousness and realized I had just thrown 25 days doing nothing but drowning in darkness and negativity trying to program my self-conscious into responding to life with a positive outlook I punished myself because I numbly and blindly thought HE had planned for. I appreciate you guys taking the time to put your vision into my story. Please share with me your insight and please advise of any possible herbal or homeopathic treatments you may know about, as well as some good resources to help me better understand what I’ve done to myself and what I’m in for on the long haul a sfar as consequences. Please if anyone has a loved one with a similar life style and condition let me know what they think about some of these weird feelings and see if they know where I’m coming from. That’s my biggest downfall is I can’t seem to find a way to get across to anyone on the level I'm able to describe it as (they always say it's too cosmic and philosophical, etc. like I’m coming from Pluto.) Perhaps if I come across the right guy he would be able to explain it in more human terms, lol. I appreciate your time, Adam
    Anonymous 42,789 Replies
    • October 2, 2007
    • 04:00 AM
    • 0
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  • I think this organization may be able to help put you in touch with other people with chronic partial seizures: Epilepsy Foundation 4351 Garden City Drive Landover, MD 20785-7223 Telephone: (800) 332-1000 (toll-free) (301) 459-3700 (301) 577-4941 (Fax) Email: webmaster@efa.org Internet Address: http://www.epilepsyfoundation.org
    aquila 1,263 Replies
    • October 19, 2007
    • 08:08 PM
    • 0
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