What do you think

[CWarrick]

Believe it or not I found this site by looking up "Inkblot Tests". I wanted to see what the fuss was about Wikipedia (disclosing the secrets of Headshrinkers) and ran across a reference to "acquired epileptic aphasia"
or Landau–Kleffner syndrome (LKS).

What caught my attention was it affects young children and disappears by adulthood. The only things that didn't fit me was age and I don't really remember any loss of language skills.

In the beginning:

I was diagnosed between ages 8 - 10 years old (Grand-Mal) that is the only thing I remember (almost 50 yrs ago).

Mostly controlled by the second med ( this was the 60s I think it was Misolin - was allergic to phenobarbital ).

What made my parents take me to the Dr. were periods of staring off into space nd being unresponsive (Neuro called them Petit-Mal seizures) and later the Grand-Mal seizures started.

Loved those pins they stuck in my scalp or that glue that wouldn't wash out.

I haven't had either type since about age 18 and I quit the AED as I kept forgetting to take it properly and trying to restart it left me wiped out for 10 or more days. I kinda held my mental breath in one corner of my mind and forged ahead with my life, pretty much denying I ever had a problem.

The end (Right?)

I thought so until I read a couple of descriptions of a Partial Seizures:
# it feels like a *zap* of electrical current that just zoomed from my brain and rushed back to my head - like electricity, you can actually feel it!
# it leaves me stunned, in a daze, like "Whoa!

If anyone here has ever been zapped by an electric fence except no pain.
Recovery is quick, maybe a slight hitch in my stride, shake it off an go on.

I can't remember when these "Electrical Shocks" started happening and they are infrequent (never kept track) maybe from 0 a month to 3 or 4 and have been happening for several years. By several I would say at least 3 years.

Are these possibly a harbinger of worse seizures ahead? I mean, should I be concerned as I ride a motorcycle as well as pilot a 4 wheeled vehicle.

Also the question of memory problems possibly stemming from the AED I was taking as a child or possibly connected with E itself??

Thoughts?

 

[Nakamova]

Hi CWarrick --

You should check with your doctor/neurologist about what you're experiencing. Unfortunately, there's no way to predict if the seizures you're experiencing will eventually become grand mals, but it is often the case that the more seizures you have, the more your brain gets in the habit of seizing.

You say you haven't kept track of these partial seizures. I would recommend that you do, and that you also keep a journal -- recording things like overall health, sleep, diet/metabolism, activity, stress -- to see if it's possible to identify a connection or trigger, and to see if the seizures are increasing in quantity and/or duration.

As for memory problems -- what were we talking about again?

Often there are memory and cognitive side effects while on the medication, and afterwards as well. It seems to affect the recall of the memories as opposed to the memories themselves. If you have repeated seizures, that can also make you fuzzy-headed. Have you experienced memory problems all your life, or just recently? At some point memory issues related to E may become hard to distinguish from the normal effects of aging, or may be compounded by them. You might want to get a baseline memory/cognition test now from your doctor, so you can get a sense of how your mind may be changing, and how fast.

Best,
Nakamova

 

[Bernard]

Hi CWarrick, welcome to the forum. :hello:

A neurologist performing some EEG testing could confirm (but never deny) the existance of epileptiform activity in the brain if they manage to be testing when you experience one of these episodes.

For my part, I'd recommend looking into EEG neurofeedback to help stabilize the brain. I'm guessing based upon what you said that it would likely stop the events from occurring (eventually). It would definitely help with your memory issues.

 

[CWarrick]

Hi CWarrick --

You say you haven't kept track of these partial seizures. I would recommend that you do, and that you also keep a journal -- recording things like overall health, sleep, diet/metabolism, activity, stress -- to see if it's possible to identify a connection or trigger, and to see if the seizures are increasing in quantity and/or duration.

As for memory problems -- what were we talking about again?

Often there are memory and cognitive side effects while on the medication, and afterwards as well. It seems to affect the recall of the memories as opposed to the memories themselves. If you have repeated seizures, that can also make you fuzzy-headed. Have you experienced memory problems all your life, or just recently? At some point memory issues related to E may become hard to distinguish from the normal effects of aging, or may be compounded by them. You might want to get a baseline memory/cognition test now from your doctor, so you can get a sense of how your mind may be changing, and how fast.

Best,
Nakamova

Thank you Nakamova...

"The Journal" is a recognize diagnostic tool, the bad part is if I have an episode (what my mother called any seizure) I could be anywhere (except while driving or riding, don't ever remember it happening then) and would probably forget about it before I could record it (unless I had a voice memo device)... Hmmmm, still have to remember it but it might be easier than a notebook.

Remembering - That segways nicely with the memory issues.
Most things I have learned in classroom settings or from repeated reading I don't have that much trouble with but there are times when trying to recall a fact or a name of a longtime friend's name I draw a blank. I think it has worsened slightly with age but not in the extreme. Names are the biggest hole most of the time and so embarrassing, for most of my life I have kinda played to the absent minded professor stereotype (even tho I never finished college - Due to my personality and vocabulary, most people assume I have a bachelor's degree) so it feels like its give me and escape from judgement.

CWarrick

 

[Nakamova]

Maybe you could train yourself to remember the "zaps"? Sort of like practicing writing down your dreams. Try assigning the zap a particular color or sound so that it will stick in your head and be remembered later.

I have a hard time remembering names too. It does seem to be getting a tiny bit worse. I have a pretty decent memory to start with, so I'm hoping I can coast for awhile before it becomes problematic. I do crossword puzzles, watch Jeopardy, etc. to keep the brain cells exercised.

 

[CWarrick]

Bitter Pill

Thank you Bernard

E keeps coming back to haunt me. Even though no "Episodes" like I had as a child.

Sorry, but back in the 60s and 70s the uneducated esp. school age peers even a good many adults could be and were unkind, so my parents told me to never talk about "IT" or "My Episodes". Even though the other kids at my school witnessed several of the more severe seizures.

Adult Re-Diagnosis:
I had some stress issues back in the 80s that linked in to law enforcement (inappropriate physical responses to negative incidents) and ended up undergoing an EEG (Diagnosis - Temporal Lobe Epilepsy).

What I was told - Allowing myself to become stressed, exacerbated abnormal activity in the Temporal Lobe causing me to feel more stressed .

Essentially its a self sustaining positive feedback loop that could build in intensity even after the original negative stimuli was gone. (do not rinse just add more soap)

I was taught "How To Relax" using "Bio-Feedback" or "Learning How to Calm The Brain".............. I did become a calmer person and consciously kept myself from (inappropriate physical responses to negative incidents) pretty much ever since.

Yes this is stressful period - but for everyone. We were just too expensive to keep due to the dramatic loss of company revenue. Nuff said!

Wow! What a blow to learn through this site I have been lying to myself most of my adult life.

Denial, the unconscious State of Humanity.

Guess I'm going to really look into this. Are there any inexpensive but decent Bio-Feedback machines out there?

Thank you again
Cwarrick

 

[Bernard]

Are there any inexpensive but decent Bio-Feedback machines out there?

Note that i was referring to EEG neurofeedback which is a bit different from other forms of biofeedback. I would not recommend trying to self-administer neurofeedback without proper training or oversight.

There is a lot of information posted about neurofeedback here in the forums (see threads listed in the link I provided earlier as well as the link in my signature).

 

[CWarrick]

Biofeedback Training

Bernard by your description of Biofeedback vs EEG Neurofeedback, my "Biofeedback" training was more an early version of EEG Neurofeedback.

A headband with three electrodes on the forehead area and the technician asked me to tell him which of several tones were the most pleasing and which the most annoying. Of course the most annoying was the one I had to shutoff. According to him, he had to keep dropping the threshold at which the tone would shutoff, he asked me to be the subject in a demonstration but in front of a room full of people I was so nervous that I couldn't do it.

A refresher course is a good idea but please explain as you seem to be hinting this could be dangerous.

CWarrick

 

[dfwtexas]

Welcome, glad you found us. I starting having seizures at age 47. Once I realized what the partial and complex are, I know what to watch for. My meds are doing a pretty good job, although since it's only been over a year and had to have some adjustments. I usually don't know what happened, but I usually know when I am going into seizures and (after awhile) when I am coming out of one.
i have found notes in my purse in my seizure handwriting about a seizure I had.
My neuro said the memory loss could be from either the meds or from seizure itself. I am going thru my childhood photos and I remember so many details. But then I can't remember a word or I go blank on a number I should know (like my own phone number)
J

 

[Bernard]

Bernard by your description of Biofeedback vs EEG Neurofeedback, my "Biofeedback" training was more an early version of EEG Neurofeedback.

Neat!

A refresher course is a good idea but please explain as you seem to be hinting this could be dangerous.

Modern neurofeedback systems measure/analyze brainwaves across 5 bands/spectrums (ie. alpha, beta, delta, theta and gamma). They are not simple biofeedback systems sampling a single biometric input like most of the ones that are designed to help people relax. JMO, but I wouldn't be comfortable self administering without some training.

 

[CWarrick]

:hello:jgbmartin

You said "But then I can't remember a word or I go blank on a number I should know (like my own phone number)".

Exactly like when I'm replying to an email and all of a sudden I can't remember how to spell a word I've used thousands of times. Thanks goodness for Spellcheckers, try to get it close and hope one of the suggested words is the one I want.

As for my childhood seizures, I never had any warning (wish I would have though). I never experienced "coming out of one". The description of events would be 1. Seize 2. Seizure ends 3. Immediately slip into sleep 4. Wake as if I had lain down for a nap but feel extremely weak (had to have help to walk). Also, memory from a few minutes before always were either missing or very fuzzy.

I'm still not over the WOW factor of the idea I have never been completely free of seizures. Their nature just changed.

All I knew about my seizures were "petit-mal" {little seizure} and "grand-mal" {big seizure}. All these different types and even sub-types are making me feel very uninformed. I guess that it took a lot of time to recognize all the variations and they probably still are not finished.

Thank you for sharing jgbmartin.

CWarrick

 

[dfwtexas]

CWarrick
I think the best information I have learned here, is not all seizures are alike.I have met others on here that can relate to different parts of my seizures and that is very comforting.
Spell checkis great...and Google is good too and I start typing what I am thinking and usually find what I want to say. I guess one day they will be able to put that in our brains! One of my adult sons lives me and understands but I still feel bad when I have to ask him what is that thing, you know, that I use everyday...what is that word. I can tell you never gets use to it.
Nice to meet you,
Jenn

 

[CWarrick]

JMO, but I wouldn't be comfortable self administering without some training.

I would still like to find Feedback equipment similar the one that I learned on.

Humans have been meditating for centuries (i.e. calming brain activity). You know - Contemplating your belly button.

Maybe my perspective is over simplified because the bio-feedback machine didn't really measure brainwaves as far as I know, it picked up the nerve impulses to and from the muscles in the forehead.
The more you relax the fewer and less intense the nerve impulses are. You calm body activity and give the mind a focal point (that annoying sound you need to mute) so you aren't worrying about all the things in your everyday life and ala-kazam your brainwave activity falls to a resting state similar to sleep but you are still aware of your environment.

Remember during your EEGs they want you to relax even take a nap. That's because nerve impulses to and from the muscles interfere with the sensors, at least they did years ago and I doubt that the researchers have been able to much to filter out those nerve impulses completely.

Cwarrick

 

[Bernard]

You might find this interesting: http://www.coping-with-epilepsy.com/forums/f23/eeg-feedback-machine-where-can-i-get-one-1356/

 

[CWarrick]

Bernard

Yes very interesting, John-Forest is right. Most of whats out there is either geared for clinical use which is very expensive down to Galvanic Skin Response (GSR) machines that you either touch with a couple of fingers or attach electrodes to.

The Antense (couldn't post the URL so take a look yourself) is the type I believe I was trained on but I think this one would cause my stress level to rise as it looks uncomfortable as H E double toothpicks.

This is a electromyographic (EMG) device that picks up activity in the frontalis (forehead) muscle and converts it into a pleasant tone proportional to the level of muscle tension in your body. With the variations in the tone as a guide, you can train your train yourself how to relax at will."

An inexpensive EMG device couldn't hurt - it may not train a person to control any but the Alpha and Beta waves but it could still be beneficial by teaching them how to relax and possibly cut down on the frequency and intensity of their seizures if they are stress related.

I dunno - am I looking at this in too simple a fashion and ignorant of facts that might or would change my point of view?

CWarrick

 

[Bernard]

The clinical EEG neurofeedback machines train the brain to work in a normalized manner. Like weight training for muscles - the exercise causes the body to adapt and restructure itself to handle the work. By adjusting to the normalized brain wave patterns, the brain actually grows/strengthens new neuronal pathways.

It's not the same as biofeedback systems that just train the body to relax.