Hi , im a newbie... desperate for support

[Moosaysthcow]

i just turned 37...for past few years I would have random episodes of black outs, during these blackouts, i would converse , have intimacy with my spouse, even snack, without remembering anything the next day.. i would forget things in my night time routine such as not washing my makeup off, forgetting my retainer then wakeup with a odd feeling like what happened...another time i just got home from shopping with my two kids, put groceries away, wanted to watch a movie with my kids, sat down, eyes unfocused, got really drowsey and fell asleep sitting up, my kids couldnt wake me up, not even the phone ringing woke me up. 3 hours later i woke up scared crazy not knowing what happened or where my kids were, they apparently tucked themselves in after their dad called home from work... another time apparently i fell into our garden soaker tub while trying to trim my toenails and I do not recall even doing this...most of my events occurred in the evening, with my one exception that occurred in February 2013 this year in the morning as I was getting myself ready to take myself to physical therapy for my back pain... my eyes started to go out of focus, i felt unbalanced dizzy, really tired..my husband woke up noticed i didnt look right and frove me to my appt, I WAS GOING TO DRIVE MYSELF!! i domt remember anything after... i called my therapist after and she told me my eyes looked droopy, i was lathargic, i was unbalanced my speech was slurred, i looked drunk. she had me text and then call my husband, both i do not even recall doing, nor do i recall even him picking me back up or getting back home. or falling asleep on the sofa for over 3 hours!... I had a MRI in jan, normal... i had a EEG in april that showed spikes in my right temporal lobe my neurologist says complex partial seizures... i just had another MRI last 5/25/13 again normal.. and tomorrow i go in for a 24hr EEG... im currently on topamax slowly being dosed up to 300mg a day. im fatigued, i sleep all the time, no energy , headaches alot, i feel as though i have symptoms still, they have me journaling, seems most active the weeks leading up to my periods. most at night, they are pupil dialtions large to small to large to small, making me dizzy, left ear hissing at same time as eyes , i feel head pressure , i just dont feel like ME! frustrated beyond words.. youd think id be thrilled to death there isnt any lesions or MTS on my brain MRI or tumor and i am, but at least if there was id have an answer as to why i was having all this happening out of the blue.... i can use all the help support information anything from anyone going through anything similar!!

Currently im stuck at home, Dr revoked driving since Feb .. cant drive...not til im stable..my last labwork my vit D and b12 levels were low so now im on supplements.. i get up to get kids off to school then i sleep again 3-4 hrs.....tomorrows EEg is to see if my sleep is meds, seizures depressions relation and or combo of it all....

guess after googling my brain out i decided to join this forum.. hope talking it out will help... this and my weekly therapist sessions.. its been a tough year..i used to workout run 3-5 miles.. got diagnosed with degenerative disk disease disk buldge l4 l5 and arthritis in my facets and seizures all this year.. 36 was a rough year.

 

[Nakamova]

Hi -- I welcomed you in your other thread as well. I hope the tests are useful, and that you can feel more like yourself soon. If the Topamax doesn't work, don't despair! You may find that other meds work better in terms of seizure control and/or side effects.

 

[screaminghelix]

Hi M! Out of curiosity, have you had a concussion ever, or with your back a pinched nerve?

The meds for epilepsy have the ability to sap your energy from you. I am on three different meds and have a VNS device implanted. @ every four hours I have to take a nap due to all the medication.

This is one of the times in life to really stay strong. I have noticed (As I am sure many of us have.) that stress, worry or to many things going on at one time, can help bring on seizures. In Indiana you do not have to surrender your license if you have epilepsy. After totaling two vehicles I decided on my own to give it up. And it sucks, but the safety of the outside world and my kids was the number one. The first two years of diagnosed epilepsy are to me the hardest of them all. Its spent trying to find the correct meds and balance. I had many of the same issues with memory loss, and unfortunately many of the meds screw with your short term memory.

I have been to University hospitals and even went to the Mayo Clinic for evaluation. Going to the Clinic was the best thing I ever did. They were able to find the missing pieces to the puzzle. As opposed to being treated for epilepsy on one half of my brain, they found that both hemispheres were causing seizures. Just try not to stress or look at having epilepsy as an ending point. It is merely the beginning of a new part of your life. They will come close or even stop major seizures from happening. So, please be patient and keep your chin up. Right now it sucks. We start losing some of the things that we are used to, but we also gain some new things. Stay strong and if you need support or questions answered, we are all here for you. -Jeff

 

[Moosaysthcow]

concussion?? not that I know of......I might have a pinched back nerve with my back..that's highly possibly..I'm due to get a facet block injection...but I have postponed it until im done with all my seizure testing..and with pins and needles as a topamax ssymptom our is it my back...finished my 24hr eeg ..uneventful just have to wait till my dr appt now June 18 which seems so far away. just upped my topamax this week im now at 250mg a day.another two weeks and ill be at my final 300mg

 

[screaminghelix]

I had a pinched nerve in my back when I was @24. It caused me to get weak in the knees and blackout for a bit. I went and had the Dr check my back and set it. After that those issues went away. A concussion can do a lot of the same. Light headed, aura, dizziness, confusion and temporary blackouts. They cause fatigue as well.

I went 20yrs with epilepsy before I found a Dr that actually identified it. They told me they were panic attacks for all those years. lol Another question (sorry for all the questions.) Have you ever woken up and noticed that you bit your tongue in your sleep? Seizures love to come on when you are tired and fatigued. I had to sleep with a mouth guard to prevent biting my tongue every night. Just trying to get some ideas. Hoping that you do not have epilepsy. -Jeff

 

[Moosaysthcow]

i have woken up many times with a biten inner cheek or inner lip, not really a tongue...i did ask my neurologist if a fall on my neck from a back headstand summer of 2011 could have aggravated all this and she didnt feel at all that it is the cause, not at all... so i sit here in wait til my next appt.. still getting symptoms even with topamax increasing..my last one was at a trip to dave and busters a place i noramally go alot in the past, this time a game with a lot of led flashing lights didnt like me so much and set me off.. i felt flushed, eyes dialted like crazy dizy like i kinda had a few drinks, i went to play a few games with less lights as i didnt want this to ruin my night out as it was my 17th wedding anniversary out... but it was bad..and i of course am stubborn headed

 

[mleslie]

Well, I just registered here, and picked this post first. I was diagnosed at around age 30/31. All my life, my (in-sympothetic by nature) relatives always referred to me as "clumsy", "stupid" or "wants attention".
I can relate to you both, Moo & Scream. I have many time frames I either do not remember, or remember as if in a haze. I'm constantly sorting out "memories" and "false memories". Between episode and med-induced, it gets all fuzzy. Needless to say, I've been sent for many "random" drug tests after going tonic at work. Now I understand, that the majority of people don't have a clue about epilepsy. When you mention it, they think back to 1872 and "the falling sickness" comes to mind. When you're "not here, now", well you "must be high or on something". I admit a male with a 2 foot long ponytail doesn't help, but that's a different stereotype than I address here.
I wish I could call "bitten lip/mouth" the end of my worries. I busted 6 of my top front teeth and 5 molars from night/sleep seizures in my 20's, but having only gone to a dentist, he too blamed me and "poor dental hygiene".
I too have had my license revoked, for which I'm kinda thankful. My meds help in ways, but shake things up too.
Now to pinched nerve... I have a "Spinal abnormality", ie. a partial extra lumbar vertebra. L4 to be exact. It is fused to L4 ("prime"??) and L5. Pinched nerves, sciatica to say the least, plus bone spurs and degenerative disks. A nerve conductivity test showed "severe necrosis of nerve conductivity".
MRI's have also shown textbook "folds and necrosis" in the part of the brain "indicative of epilepsy".
I live in New Mexico, which is NOT the best place for diagnosis nor treatment of any form of disease/condition. I tend not to think of Epilepsy as a disease, but as a condition. Diseases can be cured, conditions face us every day in most things we do.