so tired...so ugh

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jaimes
Regular Member


Date Joined Jul 2006
Total Posts : 30
   Posted 9/27/2006 10:44 AM (GMT -7)   
i know there's a post seizure thread already, but i didn't want to take away from it.
 
i had a seizure (tonic) 2 nights ago after a cluster (about 10) partials throughout that day. i'm spent. i'm not so sore anymore, but mentaly, i'm out of it completely. i'm weirded out as usual, everything seems off. i'm worried on top of it, that but of course, i'll have another sooner than later.
hubby said it was about 5 minutes.....for some reason i remember 2 tonics...apparently i'm nuts! lol and something about camping? lol i have no idea what's going on in my head! i'd had a seizure back in july while camping- and another in aug while up north...i'm overlapping things?
 
i just remembered i was told to go to the hospital when i have days like that! lol oops! it's not like i could have driven, and hubby wouldn't have taken me...i was too out of it to know better that night obviously. and no way i'm spending 200$ on an ambulance....i'm inbetween neuros and it's driving me mad.
 
i'm not medicated- i started a thread on epival a little while ago, if you're curious, that's why i'm not medicated. i dunno. i just feel...burnt...worried...soooo tired and confused.

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 9/27/2006 2:16 PM (GMT -7)   
Jaimes,  I completely understand what you're going through.  I've had clusters many times.  They are so exhausting.  I'm also between neuros.  It's frustrating.  I know it's hard, but try not to stress too much about when you're next seizure is going to happen.  As we all know, stress is a serious trigger for seizures.  It's a viscious circle that we live in.  Just remember that we're here for you and that we all understand what you're going through and you have our complete support.

Shaun
No one left behind!
1*
RLTW


jaimes
Regular Member


Date Joined Jul 2006
Total Posts : 30
   Posted 9/28/2006 9:18 AM (GMT -7)   
thank you! sometimes you just need to hear you're not alone, ya know? i'm not so much stressed...i don't think? i'm generally pushed over the edge right before one, or a cluster. after the fact, i'm pretty zen...either cause i'm exhausted, or partly...well not suicidal, i'm not, it's just, i get more in the mind set of 'what's the worst that can happen and do i really care?' not so much! perhaps morbid, but it forces me to get up and go for it anyway. you only live once, and if that once happens to be in this condition, so be it- what have i got to lose right?!
 
things are still a bit off, but i've managed to wander for afew hours with the dog, kinda center myself and go for a run etc. i'm telling ya, it's weird...really really weird! the forest, cetic music, and something...ican't put my finger on it, but those 3 thngs are stuck in my head? like i was there, or i can't explain it. but it seems with every seizure i add something new to the list of things that throw me when they shouldn't after the fact. did that make sense?
 
 
Edited for cryptic language.  See rule #11.
 
 

Post Edited By Moderator (HALO) : 9/29/2006 4:15:53 PM (GMT-6)


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 9/28/2006 4:51 PM (GMT -7)   
Hey Jaimes, how are you feeling? Any better? Let us know how you are doing...
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

jaimes
Regular Member


Date Joined Jul 2006
Total Posts : 30
   Posted 9/29/2006 7:48 AM (GMT -7)   
i'm alright. just depressed i think? i'm still weirded out, but not nearly as much as right after. i dunno if i'm depressed cause this really does suck as much as i'm feeling...or a fried something! lol i knew it was coming. i haven't been myself for weeks. my friend keeps telling me i should be more like my husband, he's a type 1 diabetic and it doesn't affect his life as this does mine. granted i'd kill to be able to take a needle and go about my daily grind! i'm rambling. i don't know what i mean. i've been so unfocused these past few days, randomly crying...not bawling or being hysterical...just sitting there and i'm tearing all of a sudden. i dunno. it'll pass i guess.

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 9/29/2006 7:54 AM (GMT -7)   
Jaimes we have all been there at one time or another. Feel free to ramble away. That is what we are here for. There are plenty of us that understand and have been right where you are now. Not sure if you are aware of this or not. But, Depression and Epilepsy go hand in hand. This is something that you need to mention to your neuro the next time. Depression=stress which=more seizures. Which we all know is not good. Take care of yourself and let us know how you are doing.
Shaun
 
Intractible Epilepsy, 7 knee surgeries, 1 shoulder surgery, Compressed discs in spine, Sacroiliac Joint Disfunction, Leg Length Deficency
Topamax 300mg's
Klonopin 1.5mg
Lamictal 200mg's
 
No one left behind!
RLTW
Educate, Enlighten, and Empower!
Epilepsy Forum Co-Moderator


jaimes
Regular Member


Date Joined Jul 2006
Total Posts : 30
   Posted 9/29/2006 8:08 AM (GMT -7)   
i won't be seeing a doctor untill at least january. sad   i'm a little bit out of luck here! i've tried my hand at the ER....and frankly, without a "proper diagnosis" (i'm still just an epileptic, no rhyme or reason) i was all but called a liar and sent home the last time i had a rough time and things just weren't right with me. lol that's proof i've been there done that and it's gotten better, i know it will. it just seems fruitless to even care at the moment.
 
i've got so much on my plate, and i know i'm not the only one, i know it's not the end of the world, but i'm inbetwen everything it seems and falling behind and i can't for the life of me figure out how on earth i'm supposed to just move on when i keep getting kicked by my own brain!
 
 
 
 
 
 
 

Post Edited By Moderator (HALO) : 9/29/2006 4:20:10 PM (GMT-6)


HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 9/29/2006 10:33 AM (GMT -7)   
I know how the ER can treat you.  Believe me I know.  I've actually been told to stop pretending to have epilepsy and to take responsibility for my actions. LOL  anyway, even though you're not actually scheduled to see you neuro until January, you should still call him and let him know how you're feeling and what is going on.  He may call something in for you or get you in sooner.  But you definately need to let him know.  If you don't communicate with your neuro, they don't know how to best help you.  Let us know how you're doing and how things go with your neuro.
 
 
Shaun
 
Intractible Epilepsy, 7 knee surgeries, 1 shoulder surgery, Compressed discs in spine, Sacroiliac Joint Disfunction, Leg Length Deficency
Topamax 300mg's
Klonopin 1.5mg
Lamictal 200mg's
 
No one left behind!
RLTW
Educate, Enlighten, and Empower!
Epilepsy Forum Co-Moderator


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 9/29/2006 4:07 PM (GMT -7)   
I agree with HALO, if you ever have any type of issues, you need to call the doc.. phone calls to your doc get documented in your medical records, and the more you call to say "something's not right" after time, they may finally take a closer look... No, you're not the only one.. and yes, other's have a lot on their plate too.. but for you, this is a big burden and shouldn't be taken lightly... call your neuro and see what they say... Good luck to you and like HALO said, please keep us posted...
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

jaimes
Regular Member


Date Joined Jul 2006
Total Posts : 30
   Posted 10/1/2006 8:10 AM (GMT -7)   

thanks guys!

 

it just, seems so useless. over the years, how many times have i called and told em this that and the other, and....nada. they'll send me for a blood test, or maybe an eeg. all of which will come up normal. atm, my neuro that i've been with since this started, is more and more of a house wife and less of a doctor. which is all well and good for her family, but kinda blows for her patients! there's no answering machine, only an out going message saying when the office should be open! lovely! hence the switch to the new guy, but i can't get in touch with him, untill i've been to that hospital. i don't have a hospital card or records there, and it's seriously out of the way...i can't even go untill i've gotten the apointment...no sooner than january. so no calling him either.

i can and will try to get in touch with the current one, but no luck thus far. and it seems useless on top of that, as such time has past and i can't even remember most of what i was feeling, or what have you. i don't even remember writting these posts in truth! which is odd as well. if anything, i have a great memory typicaly!

i feel like i'm spinning my wheels and have no one to turn to who can actually help me. in the nearly 13 years i've had seizures, i haven't even come close to a diagnosis. it took 8 years for them to say, yeah, okay, you have epilepsy. i'm terrible with meds. seriously. the side effects are often...seizures! and i can't stand having sz after sz on top of being shaky and tired etc. they play with my meds, doses, types etc, and it just continues.

i'm completely normal except for the seizures! my eegs, mri's ct's, blood work etc...normal.

i'm adopted w no medical history. i've had many concussions throughout my life, a drinking problem back in the day, issues with malnutrition .... lol in short, it could be any or all or none of those reasons, but for the moment, they know nothing and my quality of life slips a little bit each year. i'm ranting here lol i'm sorry. i dunno if i'm angry, tired, depressed, annoyed, frustrated, or all of the above. but i can't stand it anymore!

post edited due to rule #11


Post Edited By Moderator (HALO) : 10/1/2006 10:24:31 AM (GMT-6)


HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 10/1/2006 9:31 AM (GMT -7)   

Jaimes,

I know how you feel.  I am also adopted with no medical background.  trying to get seizure control is basically a game of russian roullette.  It's trying to find the right combination and dosages of meds that work for you...and guess what?  One of the side effects of moist AED's is seizures.  Sounds weird I know.  The drugs they give us to stop siezures may cause seizures.  Give it time and be patient with the meds.  If you can't get in touch with your new neuro or get to the hopsital.  You might want to consider another neuro.  I know that is inconvenient...again.  But, if that's what you have to do....then that's what you have to do.  Also, I suggest you keep a daily log of how you feel, what you eat/drink, when you have a seizure, If someone is with you when you seize.  Have them right down what you were doing right before you seized and what the seizure looked like, and howlong it lasted.  Do this every day.  I suggest a pocket sized notebook.  That way it is convient to take with you when you're out. 


Intractible Epilepsy,7 knee surgeries, 1 shoulder surgery, compressed discs in spine, Curvature of spine, sacroiliac joint disfunction, leg length deficency. Topamax 300mg's, Klonopin 1.5mg's, Lamictal 200 mg's
No one left behind!
RLTW!
Educate, Enlighten, and Empower!
Epilepsy Forum Co-Moderator

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