New here, hoping for information

[Rhonda]

Hi, i am 38 and I was just diagnoses with seizures a week and a half ago. Complex partial seizures. A 30 minute EEG showed I am having them when I am Wake, when I am drowsy, and when I am asleep. They said its left temporal lobe partial epilepsy and started me on carbamazepine. How bad does this sound? I don't see a neuro until the end of August. I would just like to know what to expect as far as an explanation of this diagnosis. Any help is appreciated!!

 

[Rhonda]

I thought I would add more info. I have felt sure I was having seizures for several years now. They recently got worse and started to affect my work. I am an ultrasound tech (supervisor of the ultrasound dept at our local hospital). I have been totally exhausted everyday for several years. I never feel good. I could sleep all the time. I have headaches basically 5 days out of 7, have trouble remembering things, am scatter-brained, get words confused a lot, clumsy (even while driving), get that terrifying fear in the pit of my stomach, have had what I called "restless arms & legs" for years that moved in uncontrollable spasm like movements, strange sensations like bugs crawling on me from head to toe, that strange feeling like your in a dream and feel strange all over, inability to focus, and really started messing up at work (zoning out-like quick unconscious moments-and waking up to find that I had typed something strange in my ultrasound report...one time I had typed the word "potatos" exactly like that, misspelling and all). I had kept this secret from my family until I started getting clumsy driving with my teenage daughter in the car and typing strange things in my reports at work. Now, I am nervous. It seems so many people have normal eeg's even though they are suffering from epilepsy. My 30 minute eeg showed seizure activity during awake time, drowsiness, and while sleeping. I hope someone can help me here. I just want to know if that is a sign that I am having them all the time and how bad this actually is. I just need to know something.

 

[holly]

hey and welcome, whilst im not the best person to answer your questons i to am having many of the same symptoms as you, and had a sudden spike of acivity, i am going to my dr next monday for my road to discovering exactly what i have or what form, whilst m sure you are as i am scared, remind yorself you have already coped this far without help, and make adjustments where needed, if yor feeling relly crappy make sure you rest! mistakes happen, does work know about your dignosis? also something tht relly helped me is knowig that even tho i feel terrible some people wth this condition are suffering alot worse with full out drop seizures 'tonic clonic' and horrible side effecs to their meds, everyone here is awesome and your not alone dont be scared!

 

[holly]

and start a diary for when and where you think your having seizures

 

[Rhonda]

Thanks, Holly~

Thanks Holly. It is difficult and of course I have a thousand worries. My biggest worry is getting a medication that works and doesn't have side effects. I was started on Carbamazapine by my GP and so far it is working, but I am not convinced that it's working as well as it needs to for me to do my job. My job requires thought, focus, and looking at an ultrasound machine and computer all day. I go back to work tomorrow (been on vacation since right after the diagnosis) and I am not sure how it will work out. Some of my work days are 9 1/2 hours workdays and I take around-the-clock call too. I have to get up in the middle of the night if a patient needs an ultrasound, then still work the next day. I'm just concerned that meds can't make that easier to deal with. who knows, I'm just worried I guess. Thanks for sharing your story and I hope you get relief and peace of mind soon too!

 

[holly]

Thanks Holly. It is difficult and of course I have a thousand worries. My biggest worry is getting a medication that works and doesn't have side effects. I was started on Carbamazapine by my GP and so far it is working, but I am not convinced that it's working as well as it needs to for me to do my job. My job requires thought, focus, and looking at an ultrasound machine and computer all day. I go back to work tomorrow (been on vacation since right after the diagnosis) and I am not sure how it will work out. Some of my work days are 9 1/2 hours workdays and I take around-the-clock call too. I have to get up in the middle of the night if a patient needs an ultrasound, then still work the next day. I'm just concerned that meds can't make that easier to deal with. who knows, I'm just worried I guess. Thanks for sharing your story and I hope you get relief and peace of mind soon too!

best thing to do is try and remind yourself that you were coping before you knew, and now you will cope better that your getting the correct help and guidance from your Dr, if all else fails there is a padded room here go let it all out!!, I know your concerned, but it will get better don't dwell on the what ifs just take them in your stride as they come, you have got to try and remain calm as stress is also not a good thing for someone with E, maybe you should also speak to your boss and explain that if your on call through the night that the next day you come in a few hours later so you can get the rest you need, being over tired is also a possible trigger.
im sure there are people that are better to answer your questions than me but if I con provide you with moral support ill do my best
keep your chin up and remind yourself you can do this!

 

[Rhonda]

Thanks, Holly! I will try. And the worst thing in the world for me is being on a computer. I am trying to change over my household bills from e-bills and e-payments back to paper statements and writing checks (old school type of payments) because I have found that with e-bills and/or auto pay, I am not focusing enough and have actually had insufficient funds a couple of times. Not because I couldn't afford it, but because I wasn't focused enough to pay attention to it and let the account get too low. So, I am trying to do that this morning and it's causing me to feel horrible! My vision is messed up like I am drunk from being on here and focusing too hard. I need to get off and take a break. This is what worries me about work. Ultrasound machine and computer all day...I just have to trust that what God intends will be! Thank you for your help, Holly. I am sure you will be reading more of me! lol

 

[holly]

Thanks, Holly! I will try. And the worst thing in the world for me is being on a computer. I am trying to change over my household bills from e-bills and e-payments back to paper statements and writing checks (old school type of payments) because I have found that with e-bills and/or auto pay, I am not focusing enough and have actually had insufficient funds a couple of times. Not because I couldn't afford it, but because I wasn't focused enough to pay attention to it and let the account get too low. So, I am trying to do that this morning and it's causing me to feel horrible! My vision is messed up like I am drunk from being on here and focusing too hard. I need to get off and take a break. This is what worries me about work. Ultrasound machine and computer all day...I just have to trust that what God intends will be! Thank you for your help, Holly. I am sure you will be reading more of me! lol

I too am having a really hard time with the computer makes me feel like im getting vertigo so im trying to do things in bursts rather than sitting prolonged
were all here to help each other so little tips of what helps you may help others and vice versa ... stay strong you will get through this and learn new ways of coping