Oatmeal in my head.

Someone left me a comment on my Melting Mama fan page today,

"I have been trying to sort thru it but I am confused. Also, you seem to be angry. Maybe I am in the wrong place. I guess I expected a step-by-step from your surgery til now. I guess I will keep looking."

Oh.

I am, sorry?  It should be mentioned that this was #2 in a set of private messages via Facebook. I do not recall seeing the first message, which came a few weeks ago.

If I seem angry right now it's because my brain is full of oatmeal.  What flavor?  I don't know.  Feels kinda banana-ish.

If you have been able to follow the all-over-the-place updates, you might know that I recently started a new medication for seizures.  

It was not working, and I was having more seizures than typical.  My brain is a labyrinth and it's broken.

My medication dose was upped this past week, and I am literally mush.  I am on the maximum dose of a medication with a black-box warning.

Rawr.

Also note:  I've received enough WLS-community related hate mail this past week to hold me a while.  I'mma ask you ONE TIME to not send me angry mails.  I'm a little touchy.  

By the way, thanks!  Love you too!

That, and, I am often just a bitch.  Snarky bitch is my forte.  I... apologize?

EEG Results - My poor brains - and do you still think I'm attention whoring and faking?

I got the first wave of bills from my health insurer yesterday for my vacation in the neurology unit at my hospital.  We have a 90/10 plan, so, yeah... seven days.  That's a lot of money.  While I left the hospital and immediately enjoyed 15 days seizure-free on new medication, the seizures came BACK.  I am now back in my regular pattern of complex partial seizures every 3-7 days, including this morning at 6am.  "Yay."

I just emailed my neurologist to let him know, when I noted that my EEG results were online.  I suppose you will believe me NOW?

Overachiever.

I did it. I seized on demand. GO ME. No, really, this is huge. I have NEVER gotten a seizure on EEG. But this morning, around 5am, unbeknownst to ME -- I had a grand mal seizure. This has not happened in a very long time (that I am aware of, you remember that I do not recall seizures unless I mess things up and find evidence...) and is likely the result of going cold turkey on my anti-seizure meds. I am thrilled. Well, not in a happy way, but you have to understand this is huge for me because I have been living With Epilepsy for five years with zero answers. My neurologist will be pleased when he views the EEG and video feed. The neurologist on staff here in the unit said that it was very clear where the seizure activity began, right side near to my polymicrogyria (brain malformation)and I show other activity between seizures in the same area. I can't wait to see it. It's been so very long without any answers. Now what? I sit here going crazy, hoping that I don't have to stay the full ten days while they continue to monitor my brain activity. I am on camera and audio 24 hours a day, with zero privacy. STAB. Worse than that is the fact that I am a very daily shower-er. Not showering makes me apeshit. I have various body cleansing methods, but one cannot help but feel gross. I can't wait to get out of here. I know I am in for a good reason, and so pleased IT WORKED.

Horizontal boogie.

On the plus side, having seizures in your sleep is a bit easier than having them during your waking hours.  I mean...

Off I go! Wish me seizures.

Updated - Today I go in to the Neurology Unit at my hospital for up to ten days (feel free to shoot me instead) of video EEG testing.

"Oh, another vacation!  You must be so excited."

No.  Actually.  It's just frustrating.  No bathing for a week, eating hospital foods and doing. nothing. at. all.  

The goal is to come off of my seizure medicine and HAVE seizures while hooked up to the gadgetry. Wish me seizures. I know that sounds crazy, but if I seize, I can come home. I've asked my friend Wendy to give me disturbing news via text or phone once I am settled in -- because while it's a long shot -- stress COULD help. I know. Nuts.

I finally went to the neurologist's office today, after a very long stretch of missed, forgotten and canceled appointments.  First thing --

Vlog Entry - About seizures

Study - Seizure Increase Not Seen Following Gastric Bypass

I am sharing this particular study because I am a seizure patient following gastric bypass who has a list of about 160 people with a similar issue.  

This makes me happy, relieved even...and a little sad at the same time.  Why?  Because it would be REALLY REALLY GREAT if someone found a definitive trigger for us who have conditions like this.

Seizure Increase Not Seen Following Gastric Bypass

By: MIRIAM E. TUCKER, Clinical Psychiatry News Digital Network

BALTIMORE – No notable increases in new-onset seizure disorder or exacerbations of a pre-existing seizure disorder were seen following gastric bypass surgery in a retrospective case series of more than 1,500 patients from the Mayo Clinic.

Reports of new-onset or exacerbated seizure disorders following Roux-en-Y surgery are often posted on epilepsy patient-oriented Web sites such as epilepsy.com, along with reports of other neurologic complications such as Wernicke-Korsakoff syndrome, polyradiculoneuropathy, myelopathy, and optic neuropathy. However, few previous studies have examined a potential connection between gastric bypass and epilepsy, Dr. Richard S. Clemmons and Gregory D. Cascino said in a poster at the annual meeting of the American Epilepsy Society.

A diagnosis of epilepsy pre-existed prior to Roux-en-Y surgery in 12 of 1,542 patients who were operated on at the Mayo Clinic between September 1997 and September 2007. Those patients were selected from a larger group of 1,776 patients because they had more than 1 year of follow-up, had undergone surgery for morbid obesity, and were aged 18 years or older. Despite evidence that gastric bypass surgery might result in decreased absorption of drugs with high proximal absorption or low pH (Am. J. Health Syst. Pharm. 2006;63:1852-7), 8 of these 12 patients had no decrease in drug levels, based on patient report or on serum testing before and after surgery. One patient who did have a low drug level was suspected of poor compliance. None of the 12 had exacerbations of their seizures.

"Based on the limited data here, there was not a decrease in serum drug levels for valproic acid, carbamazepine, or levetiracetam. ... Even patients with significant seizure risk factors did not manifest an exacerbation of seizures," noted Dr. Clemmons and Dr. Cascino, both of whom were affiliated with the division of epilepsy in the department of neurology at the Mayo Clinic, Rochester, Minn., at the time of the study. Dr. Clemmons is currently in private practice in Denver.

Only 5 of the 1,542 patients developed new-onset epilepsy following surgery. Of those, only 3 (1.9% of the total cohort) could be considered to have unprovoked epilepsy. One of the other two patients had a history of meningoencephalitis and had just a single seizure 2 years after surgery that was possibly associated with hypoglycemia. The other one had a seizure in the setting of a stroke 3 months after surgery. None of the five developed intractable epilepsy.

About three-fourths of the patients in the study were female. Their charts were examined for evidence of seizure exacerbation post surgery, defined as an increase in seizure frequency above preoperative baseline where another cause was not identified. Patient questionnaires were used to supplement where data were lacking.

"Based on the reviewed data, there is no clear exacerbation of preexisting seizure disorder following gastric bypass ... Most patients with seizure disorder do well following Roux-en-Y," they concluded.

 

This is why I will be denied life insurance.

I have taken to calling the Days That I Have A Seizure, "Seizure Days."  

I wonder sometimes...

I wonder sometimes, if you're all just f-cking with me.  I know I have said it many times before.  

Too Much Thinkings

If I made comics they might look a lot like this.  That's me and my brains.

I am Beth, and I have epilepsy. Day 1.

November is National Epilepsy Month.

I am not faking it.

I would love to say I am. 

I am BETH, and I HAVE EPILEPSY.   I am sorry if this bothers you.  If this makes YOU uncomfortable.  But, this is MY reality.  GET OVER IT.

I had my first witnessed grand mal seizure in January 2008 at my plastic surgeon's office, during my pre-plastics consult.  I was having seizures prior to that date -- but did not understand my symptoms that occur just before a seizure and after -- called auras. 

I am only understanding it NOW -- and I realize that I have had seizure activity since at LEAST 2005-2006 when I hit my lowest weight post gastric bypass surgery.  And, YES I think it has something to do with the massive weight loss > brain twitch.  I may never know why -- but here I am! 

At the current stage -- I seem to have a seizure DAY that I am AWARE OF every 1.5-2 weeks, with 2-3 events in one day.  It seems to follow my hormone pattern.  I have complex partial events, and I may be having smaller events that I cannot decipher.

JUST GET OVER IT.  It's not your problem.

1 in 100.

30 Days 30 Ways -- November 1 --

• Take the Get Seizure Smart quiz at www.GetSeizureSmart.org.

• National Epilepsy Awareness Month

• www.epilepsyfoundation.org

I. Uh. Don't know.

I am paying to fail a class.  Basically, yes, that would be the the gist of it.  I cannot wrap my thick skull around math.   I failed nearly every high-school level class I took, culminating in senior year passing by >this much< to graduate, in a freshman or sophomore repeat math class.  That's right, I had to repeat it to graduate.  

I was accepted into college upon a personal interview.  O-o  I did not go.  But.  I was accepted.  That's persuasion.  

Considering this was a thousand years ago, I am not at all surprised by my utter lack of brain when it comes to math now.  I just do not connect.  There is no simple way to say "This is what you do."  Even when something is explained -- I don't remember how to do it the second time  -- even if I did it correctly the first time.  Which means, I have to re-read directions, every single time I see a new problem.  

Add in that I have >this much< retention with zero recall, I'm now on hour three of a practice session of BASIC BUSINESS MATH this morning.  I had to stop look at the screen, after re-doing the same type of question about twenty times my browser blew up.

That's sort of how my brain feels when challenged with a word problem.

"Can I help?"  

No, not really, because you can understand directions.  I cannot.  

You don't get it.

I have read, re-read, redo, reread, rewrite, scratch, walk away, come back, and still don't get it.  Math and other concrete things must be SHOWN to me physically with money, cubes, balls, items, boards and voices.  There's no way that I can connect written text to How To Solve This.  Does that make sense?

Here - I went away for a minute and did a test to show you -

Click to enlarge

And that was with EFFORT.

That's the way I live every day, and it's been like that since at LEAST 2006.  I was diagnosed with a cognitive disorder in 2007 (I think?) and a memory disorder.  

I have a broken brain.  It was broken BEFORE gastric bypass -- and was called ADD.  There is no doubt that I am attentionally deficient.  Watch me on Facebook.  "Look!  SPARKLES!"    However, I'm not stoop'd either.

I score fantastically on IQ tests.  I fail basic math.  Can I get a job that requires no word problems?

 "If Sally-Sue is paid $97,500 for her job as a Used Car Salesman and gets commission based on sales of meth on the corner that aren't taxable, with a levy from the IRS for an old failed business, and buys sugar-free PEEPS every other day that are taxed at a rate of 5.5% in Hawaii only, where the shipping is based on the heaviest item in the box, with an added fee of $10 for handling, and travels to work on a scooter with ethanol that she buys for $3.50 a gallon every three days, what is she making for dinner on her low carb diet to go with the bottle of wine she bought yesterday for $19.99 plus tax?"

Uh.  The answer is D.  I don't know, and the train will arrive at 3pm.

I sent my Professor a message.  I explained, briefly, that I've been looking at this program for eight hours, and I'm still cycling through the questions and failing the same ones.  Maybe I can find a Math For Those Who Can't Remember Shit class, or even better, a Estimate My Grocery Cart class, cause I'm really, really good at that.

It matters.

If you weren't aware -- I have epilepsy.

I developed a seizure condition at some point between 2006-2008 that culminated in many grand mal seizures in January of 2008.  It's now April of 2011, and I am still afflicted with seizures.  I take three medications, and I am still unaware of an oncoming seizure, and this has halted pretty much everything about life since January 10th, 2008.

I have memory problems, cognitive issues and I can't tell you what your name is, even if we've met.

You can thank seizures for this, or the medicines to control them.  It's a toss up.

Irregardless, I support epilepsy research.  For myself, and anyone like me.  Specifically, for those like me, who developed epilepsy as healthy young adults during or after massive weight loss. 

Wear purple on Saturday.  Make a donation to the epilepsy therapy project.

Dear Friends,

March 26^th, this Saturday --  is Purple Day!  Motivated by her own struggles, 9 year-old Cassidy Meagan of Canada founded Purple Day in 2008, to get people talking about epilepsy to help dispel myths, and to let people with epilepsy everywhere know they are not alone.  The Epilepsy Therapy Project is a proud partner of Purple Day and supports this grassroots effort dedicated to increasing awareness about epilepsy worldwide. "

Please donate.

 

It's a start.

I have seizures every few days -- sometimes as often as two in a day for a couple days -- and sometimes not for weeks at a time.  I haveyetto get a seizure on video or EEG.  With that in mind, I've told the kids and Mr. MM to use their camera phones and go ahead and RECORD episodes if they CAN CATCH THEM.

 Mr. caught one this morning, but missed the first half.  I was repeating myself, asking for glucose, rocking, lip-smacking and completely out of it.  I have no memory of this incident, until the finger stick part.

This was a temporal lobe seizure.

An unusual sensation or emotion, known as an aura, may precede a temporal lobe seizure, acting as a warning. Not everyone who has temporal lobe seizures experiences auras, and those who do have auras may not remember them. The aura is actually a small seizure itself — one that has not spread into an observable seizure that impairs consciousness and ability to respond. Examples of auras include:

• A sudden sense of unprovoked fear
• A deja vu experience
• The sudden occurrence of a strange odor or taste
• A rising sensation in the abdomen

People who have temporal lobe seizures usually remain partially conscious during a seizure, but they lose awareness of their surroundings and usually don't remember what happened.

A temporal lobe seizure usually lasts 30 seconds to two minutes. Characteristic signs and symptoms of temporal lobe seizures include:

• Loss of awareness of surroundings
• Staring
• Lip smacking
• Repeated swallowing or chewing
• Unusual finger movements, such as picking motions

After a temporal lobe seizure, you may have:

• A brief period of confusion and difficulty speaking
• Inability to recall the events that occurred during the seizure
• Unawareness of having had a seizure until someone else tells you

In extreme cases, what starts as a temporal lobe seizure evolves into a grand mal (tonic-clonic) seizure — featuring convulsions and a loss of consciousness. About half of people with temporal lobe seizures never experience a grand mal seizure.

 

 

Serene Branson's Live "Atypical Migraine," Welcome to my brain.

This reporters' "episode" is a lot like my seizures.

I have episodes no unlike this, every few days.

My first diagnosis was "atypical migraine."    

I now have - without any documentation on EEG -

• Intractable epilepsy: A form of epilepsy that does not improve (fewer or less severe seizures) with medication. Surgery may be the next recommended course of treatment to improve the patient's condition.

Madness.

(Ignore me if I don't make sense.  My brain is oatmeal - post seizure.)

I want off the drugs.

I see my neurologist tomorrow morning, and it's been entirely too long that I have had an appointment with him.  I have had plenty of back and forth emails, but no in-office visits for a long time.  I plan to discuss --

• Changing my seizure medication.  I want OFF of this combination.  I am sick of feeling like a sponge, a half-asleep, dizzy, confused, ataxic, can't write, can't think, can't SEE, sponge.
• Avoiding adding a weight-gaining medication, because I know the "old school" seizure drugs that tend to work, tend to pack on pounds, and I am doing WELL with this combination of maintaining weight.  Topamax WORKS, even if it makes me feels HORRENDOUS.  I cannot tell how much or which drug causes which side effect, because "Hey, I can't feel my feet right now!"
• I know I need to remain on medication, because I am still seizing.  I want to try a different option is all, let's try different side effects!
• I need something to control the complex partial seizures, it's totally unacceptable to me that I am still having them as frequently as I do, without a cause or indication.

I am bringing along my registry of 145 post WLS seizure patients, and although I am entirely aware that he has ZERO thoughts that my condition is at all related, of course I do.  I live in this body, I have this brain, this brain worked before I lost 170 pounds and got pregnant.  

I will show him, to at least make the point that I'm trying to gather information, and we are all seeking answers.  Maybe he has access to further research or resources for ALL of us, even if it doesn't end up pertaining to me specifically.   Maybe.

Thanks, go suck a balloon.

Sometimes it's hard to put the words together to say "thank you," because sometimes it can be difficult to feel gratitude when you feel like a deflated balloon. 

Which is where I was this morning when I came to make a post about "thanks" and found myself with no memory and postictal. 

Oh. That.  And, then, my day is like that balloon, "pffffffffft.  I am/was okay, and then, half asleep, confused, irritable and waiting for tomorrow.  

WHY IS IT ONLY 3PM?! Mr. MM, I told you, that 2^nd job could shove it, nicely.  

So, hey, thanks.  I can't remember what the heck I was PLANNING TO WRITE, but, I lost it.  Pffffffft, the balloon popped, and I lost every reply I had to the super-nice emails I got.  (They will return, this is just how it goes.)  And, when the "words" do return -- they flood back -- so piss me off now, and I may forget it by tomorrow because my mind is PURE PROTEIN JELLO right now.

This day is full of win.

I'm having a day.  I woke up with a headache and ringing ears, that soon enveloped my head in a typical MM Seizure.  I sort of felt it coming, I felt sick.  

Then, at approximately 1pm, I must have had another one.  But, this time, as no one witnessed it, I only have the whacked out status update I placed on Facebook, combined with apparently dropping my keyboard on the floor.  

Since my events only last a few minutes, I was okay within a few more minutes and I was off to take a shower.  

I didn't connect the the fact that I felt foggy to a possible seizure until I found the Facebook status.  And, this is usually how I know something happened, AFTER THE FACT.  This sucks.  I get either very little warning, enough to tell me to SIT DOWN and wait it out just in case, or none at all, with no memory of the event.

One seizure every few days to a week is enough.  I do NOT need two in one day.  I'm just about ready to scroll through and try to find every instance and put in on a calendar.  The problem is that when this happens, I am either totally unaware -- or too foggy to put it down right away.  I'm only sitting here now because I saw what I left on Facebook and was horrified, and that only one person responded.  Still, OMG!  There should be an anti-seizure posting lock on my keyboard, phone, and other devices.  In fact I think there is ... under Universal Access... I can set it so that the keyboard doesn't accept "aaaaaaaaaaaaaa."  

In other news:

This seems ironic after I got the phone call the other day to ask about the quality of my experience with Social Security and it's online system, and the follow up.  I told them it was somewhat easy, aside from giving DATES OF SERVICE when I've been to the hospital.  Except, I also mentioned that I never heard anything from them again, after I applied.  Lo and behold, I get a letter in the mail.  I guess this is my answer.

 

I have to GO to work to be able to LEAVE a job to qualify for standard Social Security benefits.  That seems like a circular problem.  If I can't GO to work, how do I get a job?   If I cannot perform the job, how can I keep the job that I cannot GET?  

I was removed from my last actual job in January of 2008, when my employer could no longer hold out on hiring someone else.  I was, 29... just turned 30?

In the ten years before that?  I had FOUR CHILDREN and probably ten jobs.  I worked in various places for very short runs, because it always came down to child care and I was the primary caregiver.  I left one job SPECIFICALLY DUE TO MY CONDITION.  In fact, I took a "short term" leave and never went back.

I guess what I am saying is, I potentially could go back to work.  But, it would require someone to drive me there and home every single time, because I cannot drive until the seizures have stopped for a FULL YEAR.  

Plus, I may not function at the same level  (scary thought) as I might have before the seizures started.  I would never be able to take on a position that I am qualified to do in my years of  being in retail:  Assistant Store Manager, Cash Office Manager, Banker, even, Barista.  I do not want to be responsible for a store's numbers on my own.  One seizure, and there goes the daily deposit totals.  I would be horrified and constantly rechecking.  Not a good plan.

It's not that I require the government's hand out right this second, but if I couldn't type as of tomorrow?   What would my options be?  It's a realistic thought, unlikely hopefully, but possible.  If I became entirely unable to continue blogging and providing income for my family from this office -- I  still couldn't GO to work!

I don't know enough about it to really understand the system, but so far, it sucks.  

I'll just continue paying my taxes and shut up now.  LOL.

BIG FLASHING NEWS FLASH --- AD SPACE AVAILABLE.  Contact me NOW.

A different kind of review post.

It appears that my newest medication deserves a post.