Hi all.

Wondering if I have TLE—new to this; been reading Flaherty, LaPlante, Geshwind, etc.

I'm looking for advice on what to/how to say in my upcoming appt. with an internist (not sched. yet and it will be someone unfamiliar to me) as far as symptoms and suggestions. It's my first time bringing any epilepsy-related issues to a Dr. for diagnosis.

I've been treated for depression many, many years, and severe depression for about 8 years now--knocked me out grad school. Haven't worked or done school since; on SSDI. I'm classified as bi-polar II, in which the person doesn't get quite manic, but hypomanic. Some OCD going on.

My background of getting to this point:

I came across hypergraphia this week, knowing that I've been afflicted but without a label or diagnosis or knowledge that it was a recognized disorder/trait. I came upon reading the stuff about Geschwind and his syndrome typography--it describes me to a "T"--and TLE issues. Saw my psychiatrist after this reading and rasied the TLE issue. His major comment was that many of the things I mentioned are commonly present with bio-polar (not usu. with bi-polar II/hypomania to such a major extent as present with me). He said see an internist and then maybe a neuro.

Aside from the personality traits ala Geshwind the things that strike me as potential seizure(s)-related episodes:

Nocturnal-experience of seeming to wake up mentally but not physically; in enormous fear; unable to move; not sure if awake or asleep. Sometimes I wake-up, sometimes not (I think) & recalled in morning. This sounds like sleep paralysis, too. I only think of these as possibly TLE-related from my recent reading.

Frozen moments--Sometimes I have brief moments where I sort of freeze, usu. turning my head slightly to the side, staring, like when trying to recall something. I tune out, come to realize I'm staring off, and then realizing I can't even think of why I would have been trying to recall something. I lose time and I’m just sort of gripped—it’s not volitional. It happens when I'm alone—mostly, or with others but usu. when not in direct engaged action/conversation. It doesn't seem like an extraordinary event to others b/c when prompted by the other I can usually respond fairly quickly, simply, like "give me a minute" or waving my hand, sometimes without even losing the trance state. I know it sounds like Absence seizures. Or is this just the normal pause of trying to recall something? I suffered some significant childhood abuse, and recoverer's use the phrase “going away” to dissociate oneself at times for this sort of thing. I do know it’s been present my whole life and that whatever it is, it is far more common with me than with others. Doesn't seem to happen when I'm driving or otherwise very engaged with others or some activity.

Weird sensations under my scalp --Started when I began Serzone (or at least that's when I first noticed it; if previously it was nowhere near as severe). It's the sensation you can get if you really tense up the muscle in the top part of your head--but far, far more intense. Sometimes only at the temple, sometimes moving backwards. Sometimes a brief one or 2, a bunch in succession, or very rarely one long one. Doesn't happen these days--not on Serzone or similar drug. With having had ECT in Fall 2003, some memories before then are lost like this sort of thing, and I've been on so many diff. meds in last 8 years--35-40+, I can't keep track of occurrences. Having been on and off Serzone, I know the sensations have come and gone in varying intensity—not nec Serzone tie or not. The episodes can be as brief as 2-3 seconds up to about 10-1 if multiple or super-long. Haven't read about this anywhere.

Weird odor smell--The smell is always the same; only at my apt? I don’t assoc. the smell with any specific behavior on my part afterwards, but I don’t know if the odor is real or not. The vast amount of my time is spent alone in my apt.

I know you can't diagnose me from these symptoms, but I'm not sure where to start with an internist who's never seen me before. And, with all of the personal and medical history to cover and the phenomena I’ve noticed, how intelligently to cut to chase so that I can capture his/her attention to take my concerns about TLE seriously. Esp. given that the phenomena can all, individually at least, be attributed to other relatively common (for my other issues going on) disorders or occurrences. I appreciate any comments.

Thanks.

Jack

Hi Jack,
I've had TLE for 35 yrs. and it's been proven that some people that are bipolar can end up having E. My best advice to you is to go to an Epilepsy Center and see and Epileptologist (Dr. specializing in epilepsy) along with seeing a neuropsych. these Drs. will team up together along with ordering an e.e.g and other tests to see if you have any brain damage or the possibility of trauma causing sz.
I have absence, complex partial, and once in awhile tonic clonic sz. I have mostly absence sz. and when I have the sz. I just lose my memory but I continue talking to others and doing what I'm in the middle of doing. The best ex. for an absence sz. is having a few to many drinks and not remembering to drive home.
Stay away from anything with nutra sweet ex. diet soda because it's been proven that nutra sweet causes more electrical activity in the brain which can lead to sz. Start keeping a diary of all your possible sz. Get a calendar and write down what time the sz. happens along with a discription of the sz. by doing this the Dr. may see a pattern in your sz. as to what time of day/night or what days of the week you are more likely to have any sz. Also try taking vitamin B12 1000 mcg. a day and cut back on the foods with starch and a lot of carbohydrates.
Check out these websites for more info.
www.epilepsy.com
http://www.neuropat.dote.hu/neurology.htm
when the main page comes up click on epilepsy

Here's wishing you well and May God Bless You!

Sue

Sue, thanks for your response.

One thing you mentioned was drinking.

I didn't mention my own history, not thinking it might have been indicative of anything. I drank from 16 to 24. Quit in '89.

I used to black-out *frequently*. Probably 150-200 times in that period. Total black-outs; from some point forward to the morning. Not coming to but twice that I recall.

It seems that most of the black-outs happened after excessive drinking, but there were times when it seemed I hadn't drank very much. Hard to tell given that you've blacked out and don't recall what happened. I quit due to blacking-out problem; didn't have alcohol issues otherwise.

Are blackouts/excessive drinking sometimes related to a kind of seizure or other epilepsy issues?

Jack

Hi Jack,
I do know that if a person is an alcoholic it can cause sz. especiallly when they withdraw from the alcohol to better themselves. My epi told me that every time a person drinks an alcoholic beverage they are destroying brain cells and it can lead to sz. if a person drinks to heavy.
I forgot to tell you also that the odd odors you have been smelling are known as a aura sz. which is known as a simple partial sz. This will sometimes happen to me where I smell odd odors, then I see colors in my eyes but I'm still conscious and aware of everything going on. The moment you notice the odd odor tighten up the muscles in your body and make you hands into tight fists for a few seconds by doing this it will stop the sz. Here's wishing you well and May God Bless You!

Sue

Wow, Jack! Hello and welcome. Your post was amazing and filled with lots of details, I'm hoping we can give you a hand.

I first wanted to ask more about the weird sensations you have under (?) your scalp. I have sensations around my head that are quite difficult to explain as they give off the most bizarre feeling that no words could properly describe. I'll try and tell you mine and you let me know if anythings similar. I figure if you have them, too, my babbling will make sense.

My sensations are actually an aura I have before one of my less favorite of seizures (I was blessed with a few various types, hoorah). It starts off feeling like static, and it actually pulses in a rhythmic type of pattern. It feels as if someone rubbed a balloon on my head (we've all had it done, lol). It's like a static aura is in my head. It feels like its from above my head and its depth goes into my head, almost like I can feel it in my brain which is kind of gross.

It seems like it pulses from my forehead to the back of my head right above my neck, then repeats. This typically happens before a seizure or a 'fit' that will drastically affect my vision, balance, etc. My seizures after these auras normally shock me, I have numbness in various locations from my fingers, arms, to even my hiney. I have electrical shock types of sensations in my legs, back, head, etc. I eventually feel frozen and cannot see, but I remain fully 'awake' in my head, I just have no clue what my body is doing.

From what I have been told, these seizures originate in the Parietal Lobe and frequently 'bounce' off of the Occipital Lobe. HERE is a link to information about it, the website is down right now but should be back up soon.

--

Regarding drinking, when having my VEEG they tried to make me drink. Due to my fear of alcohol I refused. Alcohol, amongst many other things is a seizure trigger. I'd only have a few drinks and would experience blackouts also, the last one I hit my head and shoulder hard enough that I never drank again. My Epileptologist asked me if I drank, I told her no but I did two-three times per year and most events resulted in my being very sick. She told me I'm probably one of 'those people' who do not tolerate alcohol as it triggers seizures, stating what I called a blackout is probably a seizure. You can view various Epilepsy-related websites and most will say in some people with Epilepsy, even small amounts of alcohol can trigger a seizure.

However, large amounts frequently (as seen in an alcoholic) then stopped can cause withdraw seizures. I'm pretty sure that would apply for drugs, too. In some people, even caffeine is a trigger for seizures. Not for me though, I drink a good 2 pots of coffee per day and I do fine.

Before I babble even more, I was wondering how long you have had these 'seizure-type' of symptoms. Did you have them BEFORE the depression symptoms came along? If not, did you stop taking your medicine or did your medicine you had been taking (on a long-term basis) get changed? There are quite a few medications that can cause withdraw seizures.

There are also a few medications that act as an AED that are also used to treat BPD. Lamictal is used for both, link: http://www.lamictal.com/. Have you ever tried that? If so, did it help at all with the other symptoms?

Edit: The website to the link I gave is still down, so here is a link to the cache of it.