SRS Life changes in an instant I can't even remember.

Discussion in 'On Topic' started by RedVsBlue, Oct 20, 2007.

  1. RedVsBlue

    RedVsBlue Penguins > *

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    Last week I woke up one morning in the ER having no idea why I was there or how I got there. I remember flashes of fighting off parametics, but nothing more. My wife, and then many doctors, relayed to me that I had a severe seizure. I handled the news pretty good, I mean, seizures happen and its even becomming epileptic can be dealt with and medicated, and a normal life can be had. I didnt look forward to taking medicine daily the rest of my life, but shit, its better then waking up in the hospital bruised and scratched up with a chewed up tongue and inner cheek.

    Well of course I have the routine CT scan, MRI, EEG's...even some other tests that seemed rather pointless. Nothing came back that showed anything significant, so I was released from the hospital and given an appt with a very well known neurologist in town. I was pretty upbeat from all that happened, and just looked forward to getting on with life.

    Flash forward to my appt with my neurologist. We are sitting there talking about things, and symptoms and I start talking about de ja vu, and other odd feelings I have been having for months. It turns out, what I thought was just weird feelings, may have actually been seizures. This wouldnt be so scary, except for the fact that I was having these feelings (or "aura's") daily, even multiple times a day. Retrospectively I should have gone in sooner, but I just thought I was going through a time in my life where I was having alot of dejavu and anxiety...life is crazy, so i didnt think much of it.

    I was put on an anti-seizure medication called keppra twice a day. In the time since my major seizure I have been taking the keppra as perscribed, and STILL having these aura's. My neurologist bumped me up to the max FDA allowed dose and I am STILL having constant aura's, and they seem to get more intense by the day. My neorologist is stumped, and luckily he isnt too ashamed to ask for help. He has refered me to one of the worlds top epileptologists, and for that I am grateful, but at the same time I am scared to death. There is nothing like sitting in front of a doctor, talking about my brain, and him telling me that he is honestly scared for me. He believes the problem lies withing my hyppocampus (sp?) in my temporal lobes, but is expexting the epileptologists to do alot more tests.

    The thing that scares me most is my brain is what makes me, me. The purpose of this post is certainly not to brag, but I finished up my FIRST college degree in math and computer science when I was 17. I am now in my mid 20's still continuing in school while working for a major computer science and banking firm. I also own my own technology consulting business. I am happily married, and you know what, ive had a damn good life that ive worked hard for.

    I dont look at the situation as unfair, because life in general is unfair sometimes. I understand things could be worse, but at the same time I dont like perplexing doctors with what is going on in my brain. Its just not a good feeling. Through it all, I have found that there are more people that care about me than I could ever imagine. People from around the country that I have known through life have rallied around me. Family has been more than amazing to myself and my wife (who I think needs uplifted even more than I do right now).

    I dont even know the point of this thread. I dont post in this forum. I guess I am just scared and I am looking to see what others have done in similiar situations to keep themselves cheerful. That is my main goal through all of this...stay upbeat...thats just who I am. I feel awful for my wife. She is going through law school and the stress this is causing her is just tearing her apart. She is by my side no matter what, and for that I am grateful.

    I always understood life could always change in a second, but I guess I never thought it would happen like this. They are already talking surgery, but want the epileptologist wants to do alot more testing before cracking things open (thank god, that scares me more than anything). I dont know if im looking for encouragement from strangers, information about epilepsy (especially temporal lobe epilepsy), or what? Id really like to talk to someone else with TLE, just to discuss my symptoms and see if its "normal" for a TLE patient, or if its beyond what other TLE patients go through.

    I dont know, comment, dont comment, do whatever. I think this post was more for myself than anything else. But if you take anything from this post, all I can say is to treasure every day. No, im not gonna die tomorrow. I may never die from any effects of this at all, but my life has certainly been changed forever. Life is precious, and while I dont fear death, I certainly have alot to live for, and times like this remind me even moreso.
     
  2. Takitome

    Takitome New Member

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    I wish the best for you and that you pull through

    It is hard to pick up on cause you cant remember having them. At worst you think you just fainted or something.

    I too have epilepsy. Actually was in the hospital a month ago for it. I ignored it for awhile too. Or thought it was something else. I remember getting tunnel vision and dizziness at times but it usually past after awhile. After my last bad one I was put on medication and it's not happened since. Didn't need any real surgery. I'm bad at the medical terms but was there for awhile.

    I'm not sure how bad your case is but you can still live a normal life when they find out how to treat yours.
     
  3. Coottie

    Coottie BOOMER......SOONER OT Supporter

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    Thanks for sharing your story so far. I hope you will keep us updated.

    I don't know much about epilepsy but I'm hopeful that you'll be able to live a happy and productive life.

    I'm not sure what I can say to help other than I will pray for you and your family and wish you only the best. With advanced in medicine these days, hopefully the expert will have many more options for you than surgery.

    Take care and try to stay positive.
     
  4. Darketernal

    Darketernal Watch: Aria The Origination =)

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    Seizures can also be blood flow related events. Because you don't have an epileptic past, Tachycardia is not excluded. You should definitly get a cardiovasculair diagram of your heart to find out wether its irregulary beating, as to determine the overal health of your heart. Stuff like that doesn't show up on regular CT scans or MRI's or EEG'S because those are brain based scans.

    Im therefore suprised that they didn't take a blood sample, and checked your heartbeating for irregularities,at least i couldn't get that out of your story.

    What happens is that even tho the heart beats fast the blood flow goes slow and inefficient, the lack of nutriciants and oxygen send the braincells into panic mode, like a lamp that doesn't get electricity you just fall out.

    Im not saying that this is what you have, but its something they definitly should check.

    This stuff could happen if your messing with your sympatic nervous system which is a part in the brainstem that regulates your heart. Now if no one in your family suffers from Epilepsy, and reading your user name, you are taking medicines of a particular type that could be sympatic stimulators, or even some daily products like taking too much ,well maby not coffee, but im wondering if there's a type of product that you are overly using very much for your consumption in your daily life?

    My advice is to press and keep nagging until you get itfrom your epileptologist to get an ECG, that will monitor your heart for at least a couple of days, to see if you suffer from Tachycardia.

    But there's also a personal side, and of course on how to deal with this stuff. My take on it is that you should find a theraphist for your wife, while you attend into an epilepsy support group, if its possible that you can do some work out (under doctors prescription) then that's great too, don't do anything in terms of dangerous activities (driving,swimming,or get on high altitudes structures you might fall from during a seizure) , make sure you are always accompanied so that a loved one can take action if stuff goes wrong. If you want information then you can goto your local epilepsy foundation found here.

    http://epilepsyfoundation.org/aboutus/AffiliateLookup.cfm

    For additional information about epilepsy go here.

    http://www.epilepsy.com/

    And here's some advice that a handicapped person gave to me:

    Never look at what you can't do, always look at what you can do.

    Between the seizures ,people can have decent lives. Its good that you value your life even more now, and maby you can help and love others in a meaningfull way, stamping something positive out of this negative event.

    I honestly hope for you that medicines will be able to settle this odeal , and i really hope they don't mess with you brain. Trust me, No one likes seizures, and i don't think most people like to goto hospitals either,but its a good thing they are there tho. Do everyting in your power to stabilize ,so you can leave in a proper manner as soon as possible. In my eyes you are a very brave person in how you've dealt with this situation, don't be ashamed to ask help from epilepsy support groups as they are an enrichment and valuable support of your life, again please get a theraphist for your wife, my last advice is this.

    The people who've i've seen recover the most are those who pick up their daily lives as soon as possible. And don't get yourself into stressfull situations.
     
  5. RedVsBlue

    RedVsBlue Penguins > *

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    Thank you for your post. There is alot of good info in there, and you have given me quite a few paths to look down for more information. About the tests they have done, I really dont remember more than I mentioned, but glimpses/memories of other things that happened in the hospital are SLOWLY coming back to me.

    They did say something about the epileptologist doing some 24 or 48hr monitoring tests, but I dont know much more about that. Right now it seems everyone who is anyone in the tri-state area is trying to pull favors and get me in to this doc asap. Ive never felt so cared about and appreciated before in life, and if it took this situation to prove that to me, then in my mind it is almost worth it. Friends, family, co-workers, neighbors, and even strangers have rallied around me like never before. I dont think I will ever be able to thank people enough, and if nothing else, they are surely teaching me how to care myself.

    I will say something more about the heart stuff. They mentioned a little bit about it, but didnt seem to persue anything. I think they are waiting till they get me into vanderbilt for more testing. I do have past heart problems, with off beats and a murmur (sp?), I brougt this up, but it didnt seem as if they pursued it much. I guess the scariest part right now is the lack of answers, and playing the waiting game until the epileptologist can get me in.

    I talked to my neurologist again, and he is perplexed as to why I am still having these significant "auras" while on such a large dose of anti-seizure meds. He said there is a percentage of people that the medication doesnt prevent those on though, but that it should prevent any full grand-mal (I believe thats the name) seizures.

    Life changes so quick, but as you said, you cant let it get you down. Old people die alot quicker when they retire and sit around and do nothing. I cannot do that, I have too much to life for. I am back at work today, and I will admit its a physical and emotional struggle. My memory of projects here at work seems to have been pretty much wiped out, but luckily my co-workers and managers are all being very understanding of the situation. I have never felt so cared about at work than when my VP came up to me and told me I could take all the time off I needed with pay. Our company doesnt do that, but he was willing to make an exception. I am just not the type of person that can do that. I want to get back into my routine, and even do more than before. Im scared, but at the same time I have an appreciation for life like never before. If this event is going to change my life, than I will do everything in my power to make it a positive change no matter what negatives are involved.

    Thanks again. I will look more into your posts and check out some local support groups. My main goal is to find others that have been through what I am going through. I want to be around people that understand the things I say, especially when describing the aura's and my complex partial seizures. I may be agnostic, but I thank whatever higher power that is out there, because I know this could be alot worse. Its not necessarily a good situation, but i feel its something I can learn and benefit from in life in atleast some respects.
     
  6. Darketernal

    Darketernal Watch: Aria The Origination =)

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    Yeah your neurologists are all so perplexed because those idiots are completely ignoring your heartproblems, 9/10 that you have a Tachycardia, i tell you this much , you'd be suprised that even in this computer technological era , that even the best experts for a great extended amount of information ,primairly depend on the information that the patient feels. Only YOU can feel what's going around in your body, so you know best what you feel, meaning your the nr.1 relay in terms of first hand information about your situation.

    That they completely ignored your heart problems displays amateurism, to give an example of how your neurologist works: I am a neurologist so i will only keep myself busy with neurology and if it isn't a neurological problem, then the problem falls out of my field and simply doesn't exist.

    Or in other words your heart history is being discarded because it lies outside of the field. The BEST thing you can do is say ' i need a doctor that will listen to me, i have a history of heart problems, and i've heard that Tachycardia is a form of heart diseased related epilepsy' talk to your epileptologist, and let him investigate this link between your heart and your brain, again although im no doctor nor allowed to make a diagnosis for you i say 9/10 that its a heart related form of epilepsy.
     
  7. 04JETTA

    04JETTA OT Supporter

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    good luck :wavey:
     
  8. teo

    teo . => ? => !

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    Interesting. Keep us updated, especially if it helps you assimilate the overwhelming amount of information you're currently receiving. :)

    One thought: You seem to have a balls-to-the-wall approach to life. That sort of thing stresses your body and mind and it comes out in as many was as there are people to exhibit them. Ever thought about relaxation techniques such as meditation and yoga as ways to 'unhook' yourself from that lifestyle and regenerate?
     
  9. RedVsBlue

    RedVsBlue Penguins > *

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    Im going to do a little research on this today and try to make a few phone calls for more opinions. Thanks for giving me another path to follow, and what you say makes sense, and certainly worth looking into further.
     
  10. RedVsBlue

    RedVsBlue Penguins > *

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    I would say im balls-to-the-wall in some respects. In others im like an old man already :rofl: However, meditation and yoga are actually a part of my weekly routine. Meditation became an important part of my life many years ago, and actually has tought me well to deal with these complex partial seizures when I get reality distortions. No matter what is happening to me, I can release and "go somewhere else" so to speak. Its something I suggest to everyone I know to get involved in, as it has helped me through times I dont think I would have made it through otherwise. I probably need to get even more into yoga as I have been slacking lately, and I think my body and mind are paying for it.

    And I will try to keep this thread updated, even if its only for myself. Im not good a keeping a journal (although I should) but posting on here where I can get feedback has always been helpful and even in this thread has helped me out. Just to get other opinions and hear other peoples experiences on this subject seems to help me deal with it much better. Plus there are alot of smart people on here that can dumb down some of the higher level things I the doc says that I cant really wrap my mind around.

    I dont understand you strangers who give helpful information, and can act like you care to someone you have never met; however, I am thankful for you. This experience is really teaching me alot. My social anxiety has all but disappeared through it all, as I think I finally understand, or understand moreso than before, just how precious life is and there is no sense in not making every friend you can. Its just not worth being an asshole all the time :) On top of that I have a greater appreciation for others in general...I want to be there for people, because I never know when Im going to need someone there for me.

    I dont know if I believe there is a purpose in everything that happens, but if there is, maybe the purpose of all this is to make me a better person. I have alot to live for, and ive found there are alot of people in my life that are willing to do anything for me. My grandma used to always talk about blessings in disguise, and maybe these lessons are what she was talking about.
     
  11. Coottie

    Coottie BOOMER......SOONER OT Supporter

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    For me, it's a realization that any one of us could experience what you've been through. As I've grown older, I'm more and more confronted with the fragility of life and how our health can change the blink of an eye. I used to feel invincible but not anymore.

    I've also been fortunate to receive kindness at a critical moment and it made an unbelievable amount of difference in my life. When my step dad passed away, I was very sad. He was one of my best friends in life. A worker at Subway that I had talked to on many occasions gave me a cookie that day. Now I've been going to Subway for many years and noone has ever given me a cookie....unless it was broken. She said, "Here, you can have my cookie." Now I didn't tell her I was sad, I didn't tell her that I was having a really bad day dealing with my step dad's death, nothing. This kindness had an extraordinary effect on me....it was like a drink of water to someone crossing a desert on foot.

    Now this act didn't cure cancer and there wasn't some miraculous burning bush experience. No...but what it did do was to help me stay positive in the midst of a difficult emotional time. When I was tempted to say "fuck it", I would think about this kindness and I was able to get up and try again. Eventually the pain passed and I've moved on with my life but I never want to forget the impact that my kindness may have on another....even if I don't ever know the effects.

    Anyways, stay strong and positive.
     
  12. Darketernal

    Darketernal Watch: Aria The Origination =)

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    In the darkest moments of my life, a person who was at the time a complete stranger but whom i now consider an angel dragged me out of that hellhole called depression, after a failed suicide attempt, i learned to appreciate life from another person who also commited suicide.

    Its comparable to being in a serious car accident, you can't get out. A fireman resque's you from the car, and although you don't know that person at all, boy are you glad that that guy gets you out of your penible position. Our caring is not an act, it is for real :love:
     
  13. Coottie

    Coottie BOOMER......SOONER OT Supporter

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    :werd:
     
  14. Elphaba

    Elphaba New Member

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    Sorry I jumped in so late, but I just wanted to give a big :hug:

    I used to work for the best neurological practice in my state (NC), in the EEG/Neurodiagnostic lab. I saw people all the time with epilepsy, and know that it can be really scary - especially when it hits later in life. All the tests, uncertainty, and weird feelings can just get to you.

    About Darketernals idea about the Tachycardia - I'd aggree that its a possibility, but if they did an EEG (which they should have and I think you mentioned they did), they should have noticed any major heart problems (EEGs monitor your heart too, and a good tech shouldve noticed, but they're not as sensative to heart problems as an EKG) An EKG might do you good anyway, just to make sure. Besides, you can have Tachycardia w/o having eplilepsy (I do).

    Has your doctor even suggested alternate meds to Keppra? There are lots of good antiepileptics out there, and not all of them work for everyone, some work better for one person than another. Also, if you've only been on the meds for a week it can take time for them to 'level you out', so I'd stick with it for the mean time.

    And, PS - yes, we really do care!
     
  15. RedVsBlue

    RedVsBlue Penguins > *

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    Doc just has me on Keppra until he can get me in with the epileptologist. This guy I am supposed to see is one of the world leaders on alternative procedures for TLE. Of course, they are planning alot of testing and monitoring to make sure they know what is going on before doing anything else. I think thats the worst part for me though, just the waiting and uncertainty. Especially because I am continually having these aura's even while on a very high dose of the keppra. I can deal with them just fine, and before I knew they were seizures, they really didnt bother me at all, but now I just want to know what is going on.

    Ive been back at work, and im working hard at getting back to my routine in life. Its been beneficial already.

    I didnt mean for my post to come off as believing you all were insincere in your concern, its just something new to me. Thanks again to everyone who has put in some input, everything has been greatly appreciated, and anything else anyone wants to add will be equally appreciated. :)
     
  16. Elphaba

    Elphaba New Member

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    Good! At least you know youre going to get great care! If you have any testing done, (I know your a gown up, etc. and I probably dont have to say this, but its a bad habit from my old job) remember to follow the pretest instructions very carefully, they may seem lame/rediculous, but it can make the difference between them getting the results/data they need or not - if you dont do them they might even refuse to do the testing.

    I know what you mean. Its that whole "Oh, shit, you mean its not supposed to be like that??" feeling. Then you start questioning everything else - everything seems like a symptom, but dont let it get to you man. You were fine before, and you'll be even better now that you've got good people working with you.
     
  17. teo

    teo . => ? => !

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    Oh, ok - good! If you renew your interest in yoga, I think it'll help. :)

    This is something I'm currently trying to wrap my head around. It's hard for me (and many other people, I'd imagine) to think of caring for humanity in aggregate. Up until recently I didn't give a flying fuck about what the rest of the world did/didn't do and I figured they could all go DIAF and I'd be fine. I'm finding it doesn't work like that. In a way, caring sets you free.
     
  18. RedVsBlue

    RedVsBlue Penguins > *

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    Wow you hit the nail on the head with that. Everything that goes wrong now I wonder if it is another symptom. I like what you said though, I was fine before with these symptoms, and ill be even better now that they are being watched. I know I have a huge network of people looking out for me, and I really have nothing to fear, but understanding that and convincing myself of that are 2 different things :rofl:

    Ive always been a "one day at a time" type person anyways, and that is helping me out here. I cant worry about what will happen tomorrow, I cant worry if the medicine wont work right, I just have to do what im told and take life a step at a time. It certainly has become something harder to do, but at the same time I know things could be ALOT worse, and while I dont necessarily take comfort in that, it does help me put things in persective. While they may not completely know what is going on, or what is causing my seizures, they are confident enough in my health to let me out of the hospital and let me live my life...and even stating here makes me feel a little better :)
     
  19. RedVsBlue

    RedVsBlue Penguins > *

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    Im going to talk to my wife about this. Its hard to do it on my own, but when we work on motivating each other its alot easier to get back into things like yoga. I am sure she will be game, and if we both try i think we can make the time for it. I remember even 30 minutes to an hour a day was always helpful.

    Im sure that would help even more with all the stress my body is under right now. Ive had tension headaches and muscle aches since I got out of the hospital, and a little yoga stretching and relaxation might just be perfect for that.

    Thats why you all are so awesome, I should have thought about that, but with everything else on my mind it never popped in there. Im sure it will make a significant difference, so thanks.

    Yea, im slowly starting to understand. Ive talked to alot of nurses through all of this too, and one of the questions I always try to bring up is "why do you care", and they all have different answers, but it seems to come down to just a general love for helping people. I think i used to understand that, and I let life and partying, and just self-centeredness get in the way of that. Slowly I am remembering the joy in helping others, mainly because I see so much joy in everyone that has done something for me. I think this is an important lesson for me to learn again.
     

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