Relatively new member

[BillK]

Hi, I don't think I ever introduced myself, just started posting. Finding the group welcoming, inclusive and useful. In a longer version of my profile, I'm:

Seizure Background: simple and complex partial epilepsy, 3 brain surgeries to remove cavernous malformations in temporal lobes and hippocampus. One got down very close to the brain stem. Some memory damage. Just when I feel totally "normal" multiples seizures hit in the same day and I get pretty disoriented. Eye strain which may be related.

Treatments:
Lamictal - alternating between 150 and 200 mg daily
Depakote - 750 mg. daily.

If I get any higher on the Lamictal I experience strong leg tension. Any higher on the Depakote I start trembling and pressing the mouse key when I don't to. Tried a variety of others with various side effects.

Self care: I'm currently moving toward a low glycemic diet and studying Epilepsy: a New Approach. Some success, I think, in doing mathematics in my head to raise my brainwaves (sort of a low budget neurofeedback - trying different things and seeing what works). Bought a bottle of German chamomile (of which I really disliked the smell) to attempt to interrupt a smell aura, but haven't opened it yet.

Interests: playing guitar, acoustic bass and frame drum, participating in local tree inventory, hiking, ethnobotany, practicing Buddhism. Spend too much time on the web commenting on Yahoo news stories that I could better use.

[Nakamova]

Hi BillK, it's nice to read your formal intro.

I like the idea of "low-budget neurofeedback". For similar reasons I try and find things to memorize, since recalling memorized text is a way of "occupying" the right side of the brain where my seizures originate. (I recently memorized the International Phonetic alphabet -- Alpha, Bravo, Charlie, Delta, Echo...) I also hope to try big-budget neurofeedback sometime, perhaps this Fall if I can find enough loose change in my sofa cushions.

I hope you'll report back on how the LGIT diet works for you.

Best,
Nakamova

[BillK]

That's a good insight about sides of the brain. My operations were on the left hand side which is why doing mathematics might be helpful. Thank you for the welcome!

[survivor]

Hey I just liked ur hobbies! Welcome! Three surgeries! U are very brave dear! Bravest brave! Take care! When u said each time u think u are normal u have a seizure, this is what happens with me too. I feel like living in a big BIG glass container, whose walls I cant see, each time I think I am not IN it and just outside under the sun and streach my arms properly and start enjoying, I GET A SEIZURE! But thats life. Now I love it this way only. Keep posting!

[NeuroNotes]

I should have done the 'formal' introduction, myself, at the time I joined but there was a method to my madness...if you will. I tend to have this issue with hypergraphia (queen of long posts, as I've been dubbed on other forums regarding the research I post, ). This is really the first forum I've opened up so personally regarding my own personal trials, so I think that speaks volumes about CWE, the administration/mods, and members. ♥ I didn't want to feel any regrets opening up (to the world), and was concerned that while being in the moment, I might get carried away, so I was a little guarded at first. I wanted to get to know people here a little better before I shared on a more personal basis. This place has been a wonderful outlet to just be real and feel. I've never liked that feeling of vulnerability, and/or being misunderstood, so I've opened up a little at a time, as I've felt more comfortable to do so. The 'time released' method seems to work better for me, lol. I guess you might say that I came through the back door, so to speak, although I can definitely understand the beneficial purpose behind the intros.

Btw, I think you have the right idea about raising your brainwaves. People with seizures may have a tendency to experience a slow wave disorder (theta range). Slow brainwave activity has been shown in people with depression, stress, anxiety, epilepsy, ADHD, ADD, etc., and even in those with schizophrenia. I have found that raising my brainwaves to the high alpha range (SMR - sensorimotor rhythm) has been very beneficial. Neurofeedback is great in this regard. Also, uplifting and rhythmic music is another method that can do the trick. I studied brainwave entrainment extensively before I learned I had a seizure disorder. I have sense gained a greater appreciation and respect for the importance of brainwaves and our perception of reality. The problem is, there are online programs out there, i.e., brainwave entrainment technology, that can actually make you worse, induce seizure activity, if one is not well read on the subject, and/or professionally trained. It's best to stick to a more natural form of entrainment, i.e., music, imo, or go with bio/neurofeedback. Online and now retail vendors are selling entrainment technology to anybody who will pay, and these programs often contain the wrong frequencies for the individual, and/or have not been tested as authentic and can also be quite disadvantageous. Some people don't need theta brainwave entrainment (slow waves), but that is usually the oscillatory pattern (frequency) most often advertised on most entrainment sites. Many often ignore the warnings/disclaimers too. This technology is powerful and no one should play around with it.

I had a seizure related learning disability when I was a child (elementary school). What was so confusing for my teachers, my parents, and of course, myself was that one day I had a very sharp mind, could ace tests, read at the top reading level, and then the next day I had no memory of what I had studied and would fail a test and/or read below my level. I was diagnosed with temporal lobe epilepsy only a few years ago, but as a child, I also experienced absence seizures in school as well, so that was perceived by adults as me not paying attention, or day dreaming. Kinda messed with my psyche through the years until I fully understood what was going on. Anyways, I've babbled on enough. Can't say I didn't warn ya.

In closing, I thought I'd leave this bit of research about sensorimotor rhythm. It really benefited me, and also helped to curtail some of the depression I was experiencing, too.

http://www.ncbi.nlm.nih.gov/pubmed/4077617

[BillK]

Thank you for the notes NeuroNotes. I'll have to try upbeat music. I read a book from the library called The challenge of epilepsy by Sally Fletcher and she recommends classical music of a moderate or moderately fast tempo without too many abrupt changes in dynamics. She says look for sections titled adante, allegretto or allegro.

That said, I don't know much about classical music and don't really like it! Sounds too pompous or something. Except Chopin and Dvorak, which might not be giving what is needed. Maybe some Mozart which she says is good.

So I guess some upbeat 50s rock or something. The stuff I do like, such as jazz or blues or punk may not work .

[Nakamova]

Studies have shown that Mozart's Sonata for Two Pianos in D major K.448 helps to reduce abnormal brainwaves in people with epilepsy. You can read about it here: http://news.bbc.co.uk/2/hi/health/1251839.stm

[RobinN]

Welcome Bill

My daughter was lucky enough to work with the Othmer's at the EEG Institute.
I believe it was one reason her seizure threshold has been raised so that she is able to remain seizure free. Another reason is from making nutritional changes. This has reversed many symptoms that she was dealing with. I sound like a broken record at times, but I believe that poor nutrition is the #1 cause of present day medical problems

I found the book that you are reading extremely helpful when I was first learning how to help Rebecca.

Though one thing I would consider... I am not sure that taking a smell that you find offensive as being a positive remedy. I would think a good smell would be more helpful to take you to that place of calm.

[BillK]

Mozart's Sonata for Two Pianos in D major K.448 in on YouTube too! Can't say I really like it, but it probably puts my brain in the "right" state.