Newly diagnosed TLE, having cognitive troubles

[violetopia]

Hello from the Sonoran Desert, USA...

It's wonderful to find this forum. I was diagnosed with left temporal lobe seizures 4 weeks ago. The cause is believed to be a mild stroke a month before that, but that's just a theory as the MRI & MRA didn't show specific damage. Right now I'm on Depakote, 1000 mg/day, but my seizures are continuing at the rate of 1-3 complex partials a day.

I have found that continuing at my job while ramping up the meds was not possible. I'm a scientific editor at a university, and even before starting meds I was having a lot of trouble reading and understanding technical material. The Depakote seemed to make that worse. I've also had significant problems with attention span--as in having close to none!--and multitasking. (It's pretty hard to multitask when you can't keep your mind on one task, much less two or three or six...) Add in the fatigue and I've ended up taking a couple of months on medical leave.

There are also language troubles, though they are subtle and few people have noticed them. Sometimes I can't find the words I need; sometimes the wrong word comes out even though I know what the right word is. Last night I said "dark" instead of "bark," for example, twice in the same sentence.

From what I've read, all this is to be expected. Since I may have had a stroke along with now having epilepsy, some of my cog issues could be stroke-related, or med-related, or seizure-related! So there is no way to predict how much they'll improve or when (or if). I am trying to take good care of myself and make peace with the many, many aspects of this situation I can't control. But I'm worried about losing my livelihood and my talents. Language and writing were always my safest places, the things I was good at. It's scary to see that changing.

On the plus side, I have extremely good emotional support from my mom and my fiance, as well as a couple of dear friends and other family. I wouldn't have been able to take time away from work at all without their financial help. So I'm very grateful for that.

Here are my questions for the community:

1. I am also dealing with type 1 diabetes along with the epilepsy. If anyone else is in that boat, feel free to send me a hello.

2. Are there folks here who have been helped by Depakote? Did you have cognitive issues, and did they improve with time? How about the fatigue?

3. Have you had to change careers as a result of your seizures? How has that worked out? (big topic, I know...)

4. Can anyone suggest specific resources for partners of people with epilepsy?

Thank you all. I'm so glad you are here.

V.

 

[Nakamova]

Hi violetopia, welcome to CWE!

I'm not on on Depakote, but my experience with other AEDs is that it can take a while for the body to adjust, and for side effects to change or recede. When I started on Lamictal, the first few months were characterized by headaches, hair loss, weight gain, nightmares and insomnia. After a few months those side effects disappeared. (Don't get me wrong, there are still other side effects for me to complain about).

I'm sure other CWE members will chime in. Here's another helpful site with patient comments about Depakote:

http://www.askapatient.com/viewrating.asp?drug=18723&name=DEPAKOTE&sort=timelength&order=0

My career hasn't changed with epilepsy -- but I'm self-employed, and have been relatively lucky in terms of seizure control and side effects. The cognitive issues can be tough, I know; when I was on Zonegran, I had problems with vocabulary and word choice that drove me crazy.

We do have partners and caregivers on this site, but you might also want to contact your local epilepsy support group for tips: http://www.epilepsyfoundation.org/arizona/groups.cfm

Best,
Nakamova

 

[Chel]

Hi violetopia, and welcome

I feel like I'm reading my own story when I read your post. My work also involves a lot of reading (more legal than scientific), and I've lost the ability to grasp abstract concepts (it took me 3 minutes to remember that term!). Pretty much what you've said above... It's hard when you lose your cognitive ability, especially if you're used to functioning at a high level.

I started out with a dementia neurologist as my specialist (still with her at this stage), as I was found to have temporal lobe atrophy a year ago after suffering a TIA-like episode. TLA means the temporal lobes are shrinking, which basically points to dementia.

I still suffer the same speech impediments (they're getting worse) even though I'm no longer considered a dementia patient, but I don't know what to put them down to anymore, and I can't get clear answers. A call to the E helpline this week muddied the waters even more, as I was told my speech problems (e.g. transposing letters - bark/dark) could be my migraine electrical activity interfering with my E. I need more contact with my local E Association, it's clear, as my next neuro appt is in March, and I don't get much direction about what to expect day-to-day. The person I spoke with at the helpline was (pardon the pun) very helpful.

Do you know if you have temporal lobe atrophy as well? Have they explained the cognitive impairment to you?

I'm on Tegretol for E and Topomax for migraine, so I can't advise about your drugs, sorry. I also can't advise about career change, but fear that is ahead of me.

There is a lot of support and advice here, and I see Nakamova has been quick on the draw and replied with a local support group. Having taken the plunge myself only this week, I can highly recommend speaking with someone either face to face or on the phone.

Chel

 

[reuben12]

Welcome to the forum. I just figured I'd chime in on my experience with depakote. I guess I'm a bit over 2 months into the process myself. The first month I have to admit I was useless. Couldn't even care for myself, sleeping 16 hours a day at least, and only able to be out of bed for a few hours before needing another nap. Like you say, cognitive abilities had been decreased.

For me, right around the one month mark it just instantly changed. I went from 16 hours sleep a night down to 6 hours, started running again, overall started feeling amazingly better. Ever since then I have seen drastic improvements. Although I admit I can't listen to more than one person at a time, and I still don't feel like myself.

I don't know if I got used to the drugs, or the drugs stopped the seizures. I was at probably 30 partials a day to begin, and by the end of the first month I had worked it down to maybe 10 or 15 partials 3 days a week. Now I'll get maybe 5 partials and some days with auro every week and a half or two, so it is getting better.

Career change, yup. I was just finishing up my application process for the fire department (I'm 33 now, so a bit old anyways). That is out the window, so I just found out today I'm accepted back into university for nursing starting january 5th. Not sure how that will play out, but I feel I need to do something productive to move on with life.

As far as partners go, and my own sanity, I'm realizing that everyone knows someone that has epilepsy. And in all those cases once the person got onto the right meds it all became bearable and life went on. I'm hoping to find that med or situation soon, but if not I just plan on continuing the search. My girlfriend supports me in that...

 

[travel bug]

Hi Violetopia:hello:

Nakamova is right that it often takes a while to become accustomed to anti-epileptic drugs, but if there's a chance that your cognitive issues are a result of the stroke, it would be well worth it to look into working with a neuropsychologist. My epilepsy is caused by a brain tumor, and I know that brain tumor and stroke patients often face similar problems. Many people on the brain tumor messageboard that I visit have had very good results with neuropsychologists. Speech pathologists, who often deal with many other cognitive issues as well, are also helpful and usually easier to find. People on the bt board also swear that physical exercise helps with their cognition.

I don't know that therapy can get you back to 100%, but from people I've heard from, it can help you get back to where you can function well if you take care of yourself. Sorry I don't have first-hand experience with neuropsychologists, but I have worked with a physical therapist who got me from a wheelchair after my craniotomy to walking without even a cane (though I do lurch a bit like Frankenstien's monster ) Therapy can do wonders!

All the best!

By the way, I was born in Tucson though my folks lived in Sierra Vista We moved soon after, so my only experience with that area is a brief family vacation.

 

[Cint]

Hello Violetopia and Welcome to CWE,

When I started having seizures 30 years ago, I was working in the airlines at the time and the seizures crept up on me out of the blue. No stroke, no illness like meningitis, no head injury, etc. They started as CP's and progressed to TC's for me. I was married to a pilot and we had two children, so since the children were small, I haven't been able to return to work, much to my dismay because of the seizures, depression, more problems, etc. I've tried 10 AED's, but Depakote is not one that I have tried, and most of the meds can/do cause cognitive problems as can TLE.

I eventually had a Left Temporal Lobectomy because I was to the point of having 3-5 CP's a day. I was only seizure-free for 14 months. The seizures were worse and it made my memory worse. I've had neuro-psychology therapy for memory after and it has helped with learning new ways of remembering.

And one more thing, I also have Type 1 Diabetes. I give myself insulin shots 5 times a day and check my glucose numerous times a day. I do hope your neurologist does know about the Diabetes.

You may want to show the dr. this, since we know diabetes effects the pancreas:

from
http://www.pdrhealth.com/drugs/rx/r...p1125.html&contentName=Depakote&contentId=169

Depakote may cause a condition called pancreatitis, a serious and life-threatening inflammation of the pancreas. If you experience stomach pain, nausea, vomiting, or loss of appetite, contact your doctor immediately.

 

[Endless]

Hi, V

What kind of seizures did you experience? CP, SP, TC?
Here's a website that explains different kinds of seizures: Epilepsy.com

I have TLE, and a lot of memory problems, too. My epi says that's not possible, since my seizures were not of an intensity that would result in that kind of symptom. I disagree - since I had memory issues, also, before I started meds. The meds just made it worse.

I haven't been on Depakote, but I agree with all that's been said. It can take a long time for your body to adjust to meds. When I was on Topamax or Trileptal my brain was like pudding. Couldn't think, remember, reason, etc., and I slept all the time. I got really mixed up sometimes and made terrible mistakes. Including a mistake with my medication that scared me so much I knew I had to get off the Trileptal - quick. I was also extremely depressed. I was taken off the various drugs I had tried until now, due to side effects. Finally, Lamictal I'm getting used to on a low dose. Now it's time to bump up the dose again - ugh.

I guess the bottom line is that you may or may not get used to the drug, and your memory and thinking ability may or may not return to some degree. If it's due to the meds it will take a few months to know.

You have lots of company in here when it comes to brain power slipping. Epilepsy affects us in a lot of different ways. Some obvious, some not so obvious. And most of our doctors/caregivers don't understand that.

I had a job that had high cognitive demands, too. And I worked with brilliant people who had no tolerance for anything but top performance, which I wasn't able to do towards the end due to the seizures and their side effects. And tons of people skills were required, which eroded due seizures. Too many complex and simple partials where I said and did wacky stuff, and it made everyone around me, and ME, kinda crazy because we didn't know what was going on.

I've found neu$ropsychologists to be of minimal help to me. Actually, no help at all except for referring me to resources that did help me. An occupational therapist/physical therapist really DID help me. Immensely. My memory improved, and I learned methods to help live with the issues that remained.

On my own, intense and continued thinking and learning about my seizure disorder helped me. Over time I've realized many of the ways it's affected me - like not recognizing how much time has passed, talking way to much, judgement slipping, trouble relating to people and situations during and after (actually all day after) I have S.P./C.P. seizures, etc.

Never mind the emotional effects I've had to work through. Like paranoia that developed before my diagnosis from experiences like thinking someone was breaking into my locked filing cabinet and taking critical files (placed somewhere else during my own CP's!), and thinking people were out to get me and saying I did things I didn't do (things that if I did them, it was during CP's when I was unconscious and had no control over or memory of what I was doing).

Fear seizures (a type of TLE SP seizure) made me afraid of whatever I was thinking about before or after the seizure - like the phone ringing. I was so puzzled why the phone scared me so much. At work the fear seizures made me afraid of tasks and people. (This is disappearing with my knowlege about what's happening and as I think and reason through it all.)

I was in a constant state of confusion and depression because I didn't understand what was happening to me. I became so confused I didn't know which end was up. I figured all of the above out on my own and am slowly fixing it all, but lots of people have found counseling helpful for this.

Lol... I guess I'm "talking" too much again. The bottom line of the above is that the effect on our work can be more than just memory and brain power. It's a lot more complicated than that. I'm slowly beginning to at least take on small responsibilities in my own life again so I can find ways to compensate and deal with all of the above. I don't think I'll ever be able to do the job I did before. I just don't have the brain power anymore so I've got to tone the work down some. I don't know what it will be. I've been thinking about it a lot.

Hang in there. This all gets better. Really.

 

[hedtrouble]

Hi Violetopia, Welcome to L Temp Lobe E. Have had it for nearly 50 yrs. The only drug that settled my simple partial seizures was Keppra along with sodium valpro. But it was the keppra that helped. With regards to work Im now on a disability pension. Cant concentrate for long, am terribly slow, get words mixed up. Headaches every day. Shocking memory. Its nice to be here with like minded people. Keep smiling, Hedtrouble

 

[fr8sfun]

Hedtrouble -
How was it that you ended up on disability pension? Just curious about the disability issue - I am on Lamital - have been having Partial Complex Seizures lately, had one gran mal in Mar 2013. Having issues at work, memory problems, can't multitask and headaches also..

 

[Chel]

Not Hedtrouble, but I tried for Disability (also in Australia) and my neuro wouldn't support me. I continue to worsen, so guess it has to come at some stage; until then, I just plod along looking like a twit in a suit.