temporal lobe epilepsy and stress hormone disorder

[morganomics]

t seems to be the case that many people here with focal epilepsy such as temporal and frontal aren't diagnosed with epilepsy until years and decades after they first sought treatment and were lumped into the psychiatric folder.
After many sleepless nights many of us have poured over books and the internet wanting to understand what was not right with both body and mind, until finally the slightly ambiguous diagnosis of temporal lobe epilepsy was made.

I feel many of us have an uncanny shared experience that cannot be denied. Especially concerning temporal lobe seizures as the experience is unmistakeable. So here I am, I feel like I'm on course to actually getting better for a few reasons, but one in particular. I discovered from epilepsy.com as well as from other reputable sources that peoples with temporal lobe epilepsy experience hormone disfunction, as stress hormones as well as melatonin secretion are altered in peoples with epilepsy. Ah ha! I knew it! I discussed endocrine problems with my therapist back in 2000, and she agreed it was a possibility. After being treated for depression, anxiety and serious sleep issues that have made me feel angry, frustrated, hopeless and of course physically exhausted seems to be the piece of the puzzle that makes sense.

The stress I feel is very intense, it feels like a sharp stinging fire in my head pushing my thoughts and exhausting my body to the degree my only coping skill is to sleep because I can escape for a little while. My memory is affected, especially short-term my mood is terrible and concentration is out the window. The feeling also makes my emotional experience very intense. Last night I watched a Paul McCartney concert dvd and couldn't help but weep out of its beauty, the same occurred while listening to chamber music which was on the radio. To stop my silly crying I had to just go to sleep, because everywhere music was hitting me right in the heart.
From my both academic and personal research I know that the hippocampus scar that causes epilepsy can be cause for stress disorders and sleep disorders in people with temporal lobe epilepsy. What do you guys think? Is there a medication or procedure that can turn off this stress feeling? I know caffeine, poor sleep add to the severity. I think I understand temporal lobe epilepsy a bit better, now I want to get better. My struggle has been like the common dream where you are to be somewhere or meet someone though things keep blocking your path and the hour gets later and later. So if you have any suggestions I'm ready to listen to your advice! Sorry for the long post I can be wordy

 

[Nakamova]

I don't have TLE, so I can't offer specific advice, but I do want offer support. You are asking very good questions. Unfortunately it can be tricky to find the answers, since hormones affect seizures and seizures affect hormones, and the effects of both can be acute and chronic. Plus, AEDs can also affect hormones too. So it's one big ball of twine to unravel.

There's some experimental data out there about the role that chronically activated levels of stress hormones can have in damaging the hippocampus in those of TLE. At this point the research hasn't gone far enough to result in specific treatments.

 

[momof3boys]

I have temporal lobe epilepsy and never thought that any of my moods could be associated with it. Im a person who has always been very "organized" and hates to not have a clean house! Now when it comes to my emotions, I can have days where I just want to give up and have crying spells. Other days, or even on the same days, I get angry over the stupid little things.

Now Im on day 17 of the Vimpat, along with the Keppra XR that Ive been taking since November of 2010. I dont know if the mood changes are due to the Vimpat, or what... But my husband has noticed that Ive been more emotional over the past few days or so. I have left temporal lobe epilepsy. As a child, I was having grand mals and complex partial seizures. When I went in for my first veeg, I ended up not having any grand mals or complex partial seizures. I was awake for the first time in my life having seizures. I was aware of what was going on during the seizures, which confused and suprised me and my mom! Now doing research, Im finding the seizures that I experienced while doing the veeg, are like the Jacksonian seizures. Now my dr said those seizures that i had during the veeg, were not being picked up as epileptic seizures, but did say it was possible for them to be partial seizures that were too deep within my brain to be picked up. So, based off of him saying that, along with the psych dr that I had seen a week after getting the veeg done, she also thinks what I had was partial seizure that were just too deep in my brain to be picked up.

Now in the meantime, Im doing all this research and writing down all my questions for when I see my dr next, which is at the end of May.

 

[mel239]

OH Morganomics-i dont know where to begin! i have been diagnosed with left tle via EEg and have been on meds for 2.5 yrs but the rage-the emotions -the "I am not right-someone help me" is still ongoing-I dont know where to turn--Ive done the psycho route and Im on the meds--my whole life I cant freaking SLEEP--yet thats what I want!!! I yearn for drugs that make me drowsy--please let me escape and sleep and all will be better after a good nights rest--BUT IT NEVER IS--isnt that what mother always said? You just need a good nights sleep? it hasnt come to me in 30 years-and the stress-how do i deal? I cant keep answering the bill collectors and I cant fill out any more papework -I dont care if its to save my house,or for soc sec or to save my job or for my kids school or my sons college-everyday its something and I GIVE UP TAKE MY LIFE I AM DONE and caffeine--if i dont drink coffee to put one foot in front of the other I will curl up and they will find me babbling nonsense in the corner-my life is a joke and my aed havent even dented my problems-maybe the seizures-but not my life and memories

 

[elizzza811]

You're going to think I'm crazy, but I think this is the problem, and why more and more people are being diagnosed with epilepsy today...

Study - Wi-Fi Makes Our Trees Sick
http://www.readwriteweb.com/cloud/2010/11/study-wi-fi-is-making-our-tree.php

Biological Effects of Cell Tower Radiation on the Human Body:
http://www.scribd.com/doc/24587464/Biological-Effects-of-Cell-Tower-Radiation-on-Human-Body

Nature and EMFs:
http://www.hese-project.org/hese-uk/en/issues/nature.php

 

[Cint]

There's some experimental data out there about the role that chronically activated levels of stress hormones can have in damaging the hippocampus in those of TLE. At this point the research hasn't gone far enough to result in specific treatments.

I have TLE and mine stem from a damaged hippocampus. My original epileptologist had asked if there was any type of abuse in my childhood, thus leading to the stress and the damaged hippocampus, since I never suffered from head injury, meningitis, etc.

Just a paragraph from http://www.peakperformancetraining.org/sitefiles/articles/stress.htm

Now, thanks to improvements in MRI, researchers can make clear images of specific parts of the brain. In his Science article, titled "Why Stress Is Bad for Your Brain," Sapolsky summarizes what has been found so far as scientists tune up high-resolution MRI to take pictures of the hippocampus. The hippocampus is the region of the brain responsible for explicit, declarative memory for knowing a fact like an address or the name of a friend, and knowing that one knows it. Its neurons are rich in glucocorticoid receptors; this is the region where animal studies have shown that stress hormones can damage neurons.

 

[morganomics]

reply

Thanks everybody for the advice. I understand the desperation Mel!! Yesterday I was feeling so awful, I drank a lot of water and took some dramamine and I woke up in better spirits. We really have to find good coping skills or things to keep us occupied during those really tough moments.

Thanks Cint for the information! I know it's only in the research phase, but I really feel that hpa - axis disorders in those with TLE fills in so much of my symptoms. If I could take a pill or a surgery that would remove the faulty hippocampus or whatever structure is causing the majority of my symptoms I would do it in a heart beat. Living with this condition is so trying and the fact that it is in the brain and affects mainly one's emotions makes me feel so different than other people. I've also been experiencing episodes where I wake up in total fear and my visual field is all messed up like I'm zooming in and out of objects, or a camera shutter in front of my eyes. Sleep paralysis has also been an ongoing issue, I feel pressure on my chest and feel as though there is an evil spirit in front of my visual field. My mother just told me she's had very similar experiences, as well as feeling the deep dread and depression for only minutes that one might have during a simple partial. I feel I'm on the right track, I just need a little bit of padding to allocate time to get over the exhaustion that comes along with stress. I have been on tegretol and topamax and both seemed to make me a little grumpy impulsive and depressed, so if you guys are having a real worsening of mood don't hesitate to tell you neurologist! Thanks guys and if you have any more advice I'm open.

 

[morganomics]

Though I've had my aura spells since a child, I did witness and experience some negative times in the mid 90's. My father had thyroid cancer and became delusional and paranoid and I can say my ability to handle stress got worse after those rough years. My mother and I share sleep paralysis and hypnogogic hallucinations, restless leg syndrome, as well as some experiences she told me that sound a lot like simple partials after she found out my doctor diagnosed me as such.

 

[elizzza811]

The mid 90s is when the wireless boom took off, and exposure to these artificially-created electromagnetic fields has been shown to cause health issues. In fact, that's when my health started to crumble. I blame my seizures on wireless...

http://www.goodhealthinfo.net/radiation/health_efx_western.htm

In fact, I've been in contact with an EMF researcher, and we're going to talk on the phone some time after May 4th. I told her about my seizures and my EMF concerns. She left me a message yesterday...