reaching out for info/common ground

[tiggy'smom]

I've just come to this site and have found a lot of comfort. But I feel that I need to open up a little more. Since I was 3 I knew I wanted to be a nurse, and in '95 I entere a diploma (hospital based nursing) program. We were actually the last class of that school of nearly 100 years. i graduated in '98 and thought all my dreams had come true. In 2004 I got a job in a city hospital where I had my first seizure since I was 8. That one was at a patient's bedside. The next one came in the spring of '05. I was not allowed to drive for a year and was tested for that year. I stayed out of woek for a year and a half, the meds, (topamax and trileptal) were started. I started a job with a hospital with paramedics in order to receive my mobile intensive care nurse. I don't know if it was the neds or the epilespy itself, but I had trouble staying awake during my shift. It was like everthing I had learned in nursing was "there" but things like drug calculations that I used to be able to do in my head were gone. And thast incuding being able to do it in a code situation. It scared the crap out of me. I was fired from that job by hte way. That memory thing followed me at home. If say I had on ch 5 and it went to commercial and I changed channels a few times, I could not remember I started on ch 5. I woulld forget the words for everyday items, my dad accused me of being drunk!!!! I couldn' remember how to get places I had gone to my whole life. Please tell me if this is an effect of the meds or the epilepsy? I can't get a straight answer out of my neuro, he says " you were a nurse you should know this", I want to punch him in the throat! And on thop of all this crap, I have to research if this is related to the fibromyalgia, and are my migraines a part of all this. As I research the (F-bomb), I notice the symptoms take me back to '02, so did the fibro bring on the epilepsy? Sorry about the babble but as I've read the posts here I've noticed that there is more knowledge here, and more answers. Why do docs just shrug and f-ing smile at you when you ask them a serious question and than throw it back at you if you worked in medicine? I'd appreciate anything anyone might have. Thanks guys!

 

[Cint]

I see that you were taking Topomax for the 1 1/2 years you were out of work. That drug is also known as Dopemax and one of the well-known side effects of that med is forgetfullness. When I started that drug years ago, I would forget what I was saying mid-sentence. I couldn't remember my address at times. I couldn't remember being at a movie and my husband at the time was shocked that I didn't remember. So, it isn't you, it is the meds messing with your brain and if you have temporal lobe epilepsy, that messes with memory also. Shame on the idiotic docs for not knowing. And show those docs this website to inform them of what E does to the mind/brain:

http://www.epilepsy.com/learn/impact/thinking-and-memory
People with epilepsy commonly report having problems with their thinking and memory. Here's a few examples of the problems people may report.

~Trouble remembering names that they once knew.
~Forgeting appointments or having trouble remembering when to take their medicines.
~Can recall things from the distant past, but can't recall events that happened in the past week.
things more easily as time goes by. Some people say they feel like the've 'missed part of their life'.
~Difficulty paying attention or concentrating.
~Feel that their thinking is slowed down.

Any of these problems could be affected by how seizures, medications or the underlying brain problems affect a person's memory. And memory involves more than just one brain area or brain function- many functions and skills need to work together to help a person remember. There are different types of memory too that may be involed.
Memory difficulties can have such a tremendous impact on people living with epilepsy that it may hinder their functioning at work, in school and at home.

Are you seeing an epileptolgist or just a neurologist?

 

[tiggy'smom]

I can't thank you enough for responding. I've seen three neuro's and have done my own poking around and have been told and haven't found 1. a cause for my seizures and 2. where they are firing from. It wasn't until I came to this site that I found the common strings pointing to temporal lobe. What really pisses me off is some days I can remember everything from working in ICU and some days it was like I was never there at all. Fortunately God was merciful and when we came close to losing my Mom this fall and she was in medically induced coma, I had all my knowledge intact and was able to translate everything the docs had to say. Though I have to say given the gravity of her illness ignorance sometimes really is bliss. But there are times my family looks at me as if I'm drunk and I will be walking into room and they don't think I hear them and they'll say remember when she was "smarter" as if I've done something to make myself stupid. I've cried myself to sleep too many times to count. Is that just me or has anyone else done that? I will look int different docs as you suggested when my insurance kicks back in, as well as the website. Thanks for responding, I felt as though I offended people, I've posted a few times and I've gotten no feedback, though I try to help others.

 

[Cint]

I've cried myself to sleep too many times to count. Is that just me or has anyone else done that? I will look int different docs as you suggested when my insurance kicks back in, as well as the website. Thanks for responding, I felt as though I offended people, I've posted a few times and I've gotten no feedback, though I try to help others.

I've cried myself to sleep many times, too. Especially when I was married. My ex would say some of the most cruel things, just because I could not remember and I was still having seizures. I felt SO alone in this world because I am the only one in my family that has E. And, no, you have not offended anyone. Some people may not know how to respond, especially since you have had training in the medical field, but don't know for sure, just saying......

 

[tiggy'smom]

I checked out those sites and I am going to look into them further. It has even given my Mom some peace of mind that there is some light at the end of the tunnel so to speak for me. She has been right there with me through all this. She finally comes home Tuesday, she's scared, I can hear it in her voice after akk she has had that safety net of the nurses and docs 24/7 for so long and now if something comes up we have to rely on EMS response time and my dad spazzing out. Thanks for your response.

 

[Eli]

Hi Tiggy'smom. I don't talk much irl. When I'm feeling good, which is maybe 40-50% of my life, I'm usually trying to catch up or just keep up with keeping the household running smoothly.

Being on the computer instigates my seizures so I'm not around as much as I used to be, but I usually end up checking in when I'm stuck in bed recuperating like I am now.

I complained for years about my seizure symptoms but no one could tell me what was wrong, so I just learned to live with them. It took me having a grand mal while driving and driving off the side of the road to get attention. It still took the medical professionals nearly another 5 years before I received a diagnosis of mtl epilepsy. My mri shows a tbi and hippo sclerosis. For the life of me I couldn't remember a head trauma. I pulled/ordered all my childhood, military and adult medical records and finally found records from the military where I'd been run over by a several thousand lb, fully loaded pallet. Those delightful drs said I was fine and sent me back to work.

When my first husband asked me to marry him, (he was also military) I said I wanted to finish college first. He pressured me but promised he wouldn't stand in the way of my education. Silly me, I believed him and I had to fight him to be allowed to attend classes. He blew off my seizures as silly, even after finding me wondering around our yard one night. I had no clue who I was, where I was....

I applaud you for finishing the nursing program!!! I finally divorced and returned to college full time, while working full time. After the driving grand mal, I was told it was a seizure disorder. I started researching and realized I'd better get my college done. I completed 2 college degrees, but after graduating each time I took a job I was let go for having seizures at work.

I no longer work and am married to a wonderful understanding man. I adopted an 8 yr old that I had taken in after her mom abandoned her. She went through some of the earlier seizure episodes with me and is a true blessing. She's now a wife and mother and likes to call and check in on me.

So what I have gathered from my experience....neuro's give you meds til they find a good combo or you die. Find a good neuro and epileptologist. Do tons of research - tg for the internet!! I track everything I do - food, vitamins, sleep, hormones/cycle, seizures, daily stuff, etc. You are your best advocate. Having a good support system in place is important. We moved and bought a house where my parents live. The city was too busy for me and my parents are very supportive - ie checking in on me when I'm home alone when my husband is at work.

I'm near 2 epilepsy centers now, was only 1 before we moved. We still have to travel 2.5 or 3 hours depending on which one we go to but I'd rather be traveling along farms/corn fields than busy city beltways for 1.5hrs like we were.

As far as....
"I've cried myself to sleep too many times to count. Is that just me or has anyone else done that?"
.....I can promise you you're not alone. I am an accountant and a computer programmer and owned a successful business. I started babysitting, cleaning houses and cutting grass at age 12. Not being able to work or function to the standard I wanted was not something I was well equipped to handle.

Try not to let it get you down, of course you have us....the family here at CWE.

:cheers:

 

[tiggy'smom]

Thanks Eli, I am back home with my parents and out of work still fighting SSI. Between the epilepsy and the fibromyalgia I don't know somedays how to get through. Sleep for us is one of the most importan things or we seize yet with the fibro I suffer from insomnia so bad I've gone up to 3 day with no sleep and not only look like death but feel like it warmed over. I have my Mom's support but she is battling her cancer and we're still not sure when or even if they are starting chemo, I'm not ready to lose her yet!!

 

[Eli]

Thanks Eli, I am back home with my parents and out of work still fighting SSI. Between the epilepsy and the fibromyalgia I don't know somedays how to get through....

I'm glad you're here and you have your family. Around the same time as I was dealing with my E my mom's health was going downhill. Lupus, knee surgery problem, a couple of falls and loss of employment so I'm really glad we moved back to this coast.

I've been catching up on reading posts and Naka was correct imho re: the ssdi/ssi. I was denied and had to appeal but that seems to be the standard. The first time I applied and was denied I let it go but like I've said I kept seizing at work and just ran out of options. The 2nd go around the copies of medical records I sent them was several reams thick. Along with a long written statement and timeline of my work history and medical history. I didn't use an attorney. When my case got to the judge I was approved. It took about 16 months I think.

I had to chuckle when you mention how others treated you, but in a comfort to you way....most of the times I was taken to the ER the drs would assume I was detoxing. (get copies of all those visits, drs make some wild ass assumptions). Of course the bloodwork was negative and they'd discharge me. My first husband was a complete ass re the seizures, course neither of us knew what was going on with me. Some of my family thought I was nuts, but I can't say I would've reacted differently.

I've got a scar down one of my eyebrows and face from a seizure in the kitchen where I rode the edge of the counter to the floor. My teen daughter was home at the time and the drs thought my husband was beating me. :roflmao:

I have huge problems with sleep also, I added melatonin to my regiment, I feel like it helps.

Being homebound, depending on others, feeling like you can't fix this, esp if you're a problem solver person is rough. Try to stay positive and get support here.

/huggs

 

[BlueCat]

I had a reply all typed out, it disappeared, so I'm starting over...
I completely understand your crying, I've been doing it every night since my seizure Tuesday - happened at work so all my colleagues saw me hauled out on a gurney. I've been a successful investment manager at a private bank for 25 years, don't know what'll happen now. My boss wanted to know if I traded that day, pretty sure I didn't but can't be 100% certain. That was the 3rd sz in 12 years since diagnosis - which was after a sz which happened while I was going 70 on my Harley. Only got a black and blue mark, got some good guardian angels. Yes I still ride - have put 65000 miles and ridden in three countries since the first one. Of course now I can't ride for 6 months except on the back of my husband's bike which makes me cry too. I have no problem sleeping, that part is way too easy. I'm lucky in that my husband is absolutely wonderful and in the medical field so takes very good care of me. Mom's in her 80's so emotional support but this kills her - I'm the only one in the extended family with e - only child so no comparisons at that level. You're not alone, and this is the perfect place to be, certainly has been a great help to me.