A brief introduction, and a few big questions. Please read!

[coloredCYANIDE]

Hello everyone, I hope life has treated you well lately.

So I've finally joined some sort of support group for this. I guess things are just getting to me combined with life's stresses, but maybe this is a place where people will actually understand.

In summary, it took almost 12 years to figure out that the root cause of my seizure disorder was anxiety. My family took me literally around the world trying various remedies but to no avail; the best neurologists in the state conducted thorough MRIs and EEGs with no abnormal findings. Lamictal just seemed to make me do poorly in school (same number of credits, but went from a 2.5 to a 3.47 after discontinuing it, with no AED non-compliance effects).

Through high school and undergraduate I picked up guitar, bass, drums, recording/production, and even went on tour with a melodic death metal band as a guitarist. But this was all without medication, and it certainly wasn't perfect, even at least getting a taste of that stupid dream. Tremors while practicing or recording were embarrassing to say the least, but the happiness it brought was insurmountable at times. I definitely wasn't photosensitive though, like I was as a child. Strobes never really bothered me, and driving calmed me more than anything in the world, oddly enough.

So now I'm in grad school to get my Master of Science degree, my thesis will be done within a month, and research is coming to a close for me in this city.

Once I started taking clonazepam, several things happened leading me to ask the following questions, so if you have anything to say for any of these please do so! I'd appreciate it more than I could express.

1) With increased stress or even receptor-based tolerance for benzodiazepines, has your dose increased so much that taking even a little bit less will cause you or someone you know to have seizures?

1a) For MDs or anyone with a better background in neurological biochemistry: does repeated therapeutic use result in conformational changes in the receptor for benzos and/or alcohols? Or could that receptor's reduced OR increased binding affinity/avidity change given time? Is this more dependent on blood titers and individual metabolism? Also, where can I find actual studies (or, what scientific journal is reputed within this context)?

2) Do you find taking this your medication is drastically affecting your mood, or was any given psychological issue present prior to developing epilepsy? Or, do you feel it developed as a result or psychological trauma or even chemical imbalances before or after clinical diagnosis?

3) What do you do to stop seizures without the aid of medicine? I've found small breathing exercises in basic pranayam (yoga) to help, as well as only using cold water on my head when taking a shower. For me, avoiding stimulants helps too, but a large dose of clonazepam is subsided by a bit of coffee to help focus at work; this also doubles as a mood elevator.

4) Has the nature or trigger of an epileptic episode changed over the years? It seems like every year I get older something changes that invalidates everything I've found to help, and I start from square 1 again.

Any reply to anything, even a hello back, is appreciated. If there's a neurologist or doctor here definitely hit up 1a for me.

I thank you sincerely for reading this and I pray you or your loved one finds happiness somewhere amongst the neurological chaos epilepsy may bring.

-Sam

 

[zbird]

Welcome Sam:

Congrats on the master's. What field, if I may ask? As far as your questions are concerned, for (2), I'm on Keppra, so I've had a few issues with moodiness (early on, some Kepprage), but that has for the most part subsided, unless I'm really tired. As far as (3), when I feel a simple partial coming on, I tried to concentrate and "talk myself out of" the seizure and also deep breathing. I don't know if it really helped or if the seizure stopped because it had run its course. I've been pretty lucky as I've had only one generalized (tonic/clonic) seizure, one probable complex partial, the rest simple partials, and the Keppra is working well in controlling the seizures.

Anyway, welcome aboard. Check out the various forums. Bernard has built a great place for support, information, venting, and some fun too.

 

[coloredCYANIDE]

Thanks for the welcome!

Well my MS will be in Infectious Disease and Microbiology; I'm currently working on KSHV and I'd like to get more into studying oncoviruses like HPV or even any other opportunist virus that hits people with suppressed or weakened immune systems.

As far as moodiness, does this correlate with your blood sugar levels?

Interesting, I'd imagine it'd help more to let go rather than focus... but it's so variable, I don't think one definite strategy works for any one person! I got the idea for cold water from the drummer of an old band who also had a seizure condition; unless he had his large fan around or some cold water, he'd start to seem visibly uncomfortable. Tried it out myself as experimentally as I could and it actually helped, with every control in place (i.e. no change in diet, sleep patterns, etc).

Where were you when your attacks occurred? My first one was in a public video game arcade, the next one in computer typing class, then a few at home, at least 3 overseas, and one in bed within seconds of waking up (speaking of grand mal attacks only).

With all that falling I have no idea why I haven't had many concussions... haha

I'll certainly be back here... hopefully soon I can post links to my music as well.

 

[zbird]

My grand mal occurred while I was in bed watching tv. It was the middle of the morning, I had been awake for about 3 hours. Kids weren't home, husband was (hint, hint). I felt something wasn't right, next thing I remember is the EMT was there, then I was at the ER. My blood sugar level was OK when I got to the ER. If anything, it may have been slightly elevated earlier. My complex partial happened at work. I was talking to my coworkers but then totally spaced and couldn't talk. That happened a couple months before the grand mal.

The seizures have been under good control for the last 3 years. I also managed to lose the husband in the process (multiple reasons, but I don't think the E and the meds helped the situation - moodiness, lack of libido, his not understanding). Kids have been great about everything, and we're better off on our own anyway.

ID/Microbiology sounds great. My undergrad was in Biology with genetics emphasis (many years ago). Good luck!

 

[coloredCYANIDE]

I've always been curious to see studies about AEDs affecting overall sexual health. Is it true that given time, one may lose libido far more rapidly? Is this the case for things like adderall or prozac as well (or any given psychoactive substance, as a generalization)? Ugh, at this age I can't imagine losing that... haha

 

[Nakamova]

Hi Sam, welcome to CWE!

In reference to question (4) about triggers, I do think that they change over time. An individual's seizure threshold seems to be a fairly mutable thing. Folks can become sensitized/desensitized to different stimuli over time, with both external and internal stressors playing a role. The brain is very plastic, and can be shaped unconsciously by many different factors. It can also be trained through conscious effort such as meditation and neurofeedback.