Watching now. I know many in the weight loss surgery community deal with epileptic syndromes as well.
I've often wondered about this as a post WLS epileptic. Is there more I could DO to control my symptoms? I know there are quite a few of you out there - with or without deficiencies occurring along with your seizure disorders after WLS.
From Epilepsy.com -
As many of you -- I have had lower back pain for years, and in my normal Beth way I have ignored it or (...don't tell anyone!) medicated it with NSAIDS off and on, and heat, and exercise, and stretching. AND GOD DAMN IT, IT HURTS.
Source - Healio
NSAID use is contraindicated in gastric bypass patients as it can cause serious ulcers. I started popping them like candy recently. No. good.
The back pain comes in cycles and never really goes away. It gets to the point where I cannot ignore it and I am currently in a Flare Of I Cannot Sit Down Or Sleep Or Lay Down And Nothing Feels Right EXCEPT getting on my knees in 'downward dog' position. When I describe it to other people they chime in with "Yep. I live this."
I had my husband take me to the urgent care MD on the weekend for X-Rays. They show disc degeneration. No surprise. I suppose after ignoring it -- plus a few years of massive obesity, plus four pregnancies, losing all of the weight plus eating haphazardly and vitamin-deficiencies, it shouldn't be a surprise.
I was prescribed an anti-epileptic drug instead of a pain-medicine, at my request because I do not want to be sedated, and that I am epileptic.
Although as the doctor was describing the medication's side effects to me, he explained that it might cause "sedation, dizziness," and I stated, "... that it isn't like I do anything important anyway, I'm not using heavy machinery as it is."
I do not know that he got my seizure humor.
I don't feel much relief from a few days of this added medication -- and I do not feel that it will be of help to the pain, but there are more options. I think that I will need to use exercise somehow, because this, just isn't working.
I can't sit. I can't sleep.
I have a broken ass. I. am. old.
Vlogging again, and failing my WADA test, and more!
I don't sleep well in an empty-ish house. I have nightmares that are frighteningly realistic when there's nobody in my bed. The positive is that I quickly forget them if I get OUT of bed and do something. I will not analyze this last one - and I am going to blame my daughter for renting a very disturbing movie last night that must have crept inside my subconscious.
My younger kids and spouse took off to Busch Gardens and Colonial Williamsburg for the last few days. They're currently en route home -- it is a long. drive. home.
I did not go for a couple reasons - first off - my dog just spent a week at a sitter's house because we went on a cruise and we would have had to board her again. She promptly came home and pooped on the carpet.
Next, this trip was sort of unplanned -- Dad and kids were planning to go white water rafting (which I was not planning to join them on... rafting would have been fun, however my youngest was too little to join) and they had canceled that trip and made this one last minute and sort of just went on the fly.
I do not do well on amusement park rides, in fact I don't go on them at all. To bring this a bit on the topic of WLS, sure I understand that a huge part of many people's journeys is to "fit on a rollercoaster again!"
But for me?
Oh. hell. naw. I do fit. I didn't fit for a time. I don't care that I fit. It was never a "non-scale victory" in my mind because I didn't care to go back, you know?
I never, ever enjoyed rides as a big girl. Disney -- Waterparks -- all of it -- LOATHE. THEM. I enjoy them much much less now.
I believe that the epilepsy diagnoses and subsequent antiseizure medications make movement-dizziness and perception much more of a problem than it was prior to seizures and meds. This became crystal clear on our recent cruise of the Northern Atlantic Ocean, where I became visually sea-sick every time I saw the waves and felt the ship bump. My brains - eyes - can't handle the disconnect anymore. It took nearly a week to stop feeling the ship move in my head, so getting on a ride to make that feeling happen on purpose is not really enticing to me.
I do miss taking photographs in parks like Busch - and while being a tourist - but hate to waste the $$.$$ on getting me in the park just to be the event timeline photographer. (Which is often my role in any location with moving parts.)
Anyway while they were off, I went to the neurologist to update about my failed WADA test and redo ...(separate post to come, my brains are special!) and a quick trip to Maine with my parents and oldest daughter.
We visited Ogunquit, ME and the Nubble Lighthouse. I've decided that fore a mere several million dollars, I could live in either location, thanks.
The results are in -
CONTINUOUS RECORDING: The EEG recording during the performance of this sodium
amobarbital (Wada) test began at 14:57:45. The background consisted of a
normal alpha frequency posterior dominant rhythm with appropriate attenuation
to eye opening. There was intermittent theta frequency slowing and
disorganization in the right posterior temporal region, centered at the T6
electrode, with intermixed sharp transients in that same area.
On review of the video and audio recording, an injection was made at
16:03:12. A few intermixed delta waves were seen broadly in the right
hemisphere shortly after that time, but no sustained slowing or change in
background were noted.
Another injection was made at 16:18:05. Again, a few delta waves were
seen broadly in the right hemisphere shortly after that time, but no sustained
slowing or change in background were noted.
The recording was terminated at 17:00:24.
SLEEP: The patient became drowsy at points during the recording but did not
CARDIAC MONITOR: Showed a generally regular rhythm.
IMPRESSION: This EEG recording during a sodium amobarbital (Wada) examination
showed a normal alpha frequency background. Despite two amobarbital
injections, no sustained change in EEG was seen at any point, and the
recording was subsequently terminated.
Yesterday at early-o-clock I went into Boston in preparation for my WADA testing. This test (like I explained before...) checks the effects of putting the halves of my brain to sleep each side at a time in preparation for eventual epilepsy surgery to remove a section of brain that is suspect for seizure trigger.
The WADA -
The test begins with an angiogram, a test that examines the flow of a dye through the blood vessels. A thin plastic tube (catheter) is introduced through an artery in the inner portion of the upper thigh. A local anesthetic is given to numb the area, and a needle is then inserted into the artery. The tube is threaded through the needle, and the needle is removed. There is some mild discomfort during the local anesthesia, but the rest of the test is painless. The tube is guided up to the carotid artery in the neck. A small amount of contrast dye is injected through the tube into the artery, and x-rays are taken to study the flow of blood in the brain. Some warmth or flashing lights may be experienced with the injection of the dye. Next, the radiologist injects the amobarbital, which quite literally puts almost half of the cerebral hemisphere to sleep for several minutes.
Immediately after the amobarbital injection, tests are given to see how well language and memory are working with half of the brain sleeping. This provides information on the functions of the cerebral hemisphere that is sleeping and the hemisphere that is awake. The same procedure is usually repeated on the opposite side after a delay to ensure that the patientâs level of alertness has returned to normal.
Soon after reaching the hospital, I got on my fancy headgear (EEG) to measure brain activity and then spent many hours WAITING for the test.
And waiting. And waiting. And waiting.
Which was fine, because then this happened, while totally awake -
Let me tell you - in everything I read prior to this procedure I was AWARE that I would be awake and functioning during the test. I knew that I would "feel" it. I knew that it was only local anesthetic.
BUT HOLY HELL.
That first part (as shown in the video...) hurt like a bitch. The only way I could describe it, because my outer skin was numbed, and I was totally non-sedated - was a spinal tap. I've had MANY of those. It was the creepiest, crawliest, burniest, leg-crampiest, GET OUT OF MY HIP WITH THAT GOD DAMNED NEEDLE YOU MOTHERFUCKER feeling, EVER.
I cringed, winced, bit my lip, at one juncture there was a tear - and I was told not to move. I have been sick with allergies and was trying NOT to cough because if that NEEDLE MOVED -- I was thinking I would knick something and bleed to death. The EEG tech came over after the procedure was over and said that I made him cringe a little, I think he had a camera over my facial expressions.I was not prepared for pain. I was prepared for discomfort. However, it passed as soon as the radiologist got through the hip area and threaded the wires past the bony area of ME. I did not feel any actual pain from the wires/tube after that, I only felt creepy/crawlies from the tiny tube later on.
Once the wire/tube was in place at the brain artery - I was dosed with medications - repeatedly - this doctor explains it very, very well... listen -- EXCEPT -
You watched it right? You understand what was *SUPPOSED TO HAPPEN? Brains go to sleeps! Listen to it if you did not. I will wait.
What do you THINK happened because I am BETH and nothing is ever simple? Neurology nurses might know.
That's the next post. I'm waiting on the doctor to call with what we do next because Beth is very special.
I don't know if I already shared THIS video, because I have watched it a few times, but I am having this test done next week June 6th with pre op on June 5th. This guy totally 'splains things in a understandable way. Snort.
I do not think I am absorbing my anti-epilepsy medication very well. I know - surprise, surprise.
I take two medications -
- Topamax 200 mgs
- Levetiracetam 2000 mgs
- Both in divided doses
My blood test results - suck -
My medication dosages are higher than the "therapeutic levels" suggested above - and my blood lab results don't seem to fit.
While my grand mal seizures are controlled (thank you Keppra?) I am having multiple complex partial seizures in clusters each week. My family says they are increased, I can't tell the difference because they happen regardless of my awareness level.
(Side note: I am also still pushing along toward brain surgery for the removal of the area of the brain that is the trigger area for the seizures, however the neuro team has suggested that it's a very large section - larger than anticipated in earlier scans - and less likely to be a cure... I still have testing to visualize and narrow it down... another post.)
- My point in posting my medication blood levels was that maybe someone out there has knowledge of this -- epilepsy AND gastric bypass AND medication levels or alternative dosing?
While I am aware that is NORMAL to have absorption issues post gastric bypass - I guess this is some proof - that medication just DOESN'T always work entirely.
The Roux-en-Y gastric bypass is most commonly performed in the United States and produces a more profound and sustained weight loss than the other two methods.2,5 This procedure uses a combined restrictive and malabsorptive approach to induce weight loss. During this procedure, a 30- to 60-mL portion of the stomach is sectioned off in an effort to limit food intake. The small intestine is then cut from the base of the stomach, and the lower intestine is connected to the pouch at the top of the stomach. The narrow opening to the small intestine slows the emptying of the stomach and produces a sensation of early satiety.6 By circumventing the lower portion of the stomach (90% to 95%) and much of the small intestine (the entire duodenum and part of the proximal jejunum), the surface area for absorption is greatly decreased and malabsorption can occur.2
Drug absorption and bariatric surgery
The mechanism of altered drug absorption depends partly on the type of procedure done-restrictive or malabsorptive. In general, drug absorption is affected by drug disintegration and solubility and the surface area available for absorption, all of which can be affected by restrictive procedures. 5,7 Disintegration of the dosage form is the first step needed for drug absorption. The smaller volume of the stomach with restrictive procedures may prevent adequate tablet or capsule disintegration due to reduced gastric mixing.7 Solubility of a drug is dependent on pH. Drugs that are more soluble at a lower pH are absorbed in the stomach, while those that are soluble in more basic environments are absorbed in the small intestine. Changes in the stomach volume after bariatric surgery result in a decrease in gastric acid production and a higher pH compared with the stomach as a whole. The change in pH may cause a decrease in the absorption of medications that rely on an acidic pH for solubility or absorption. A reduction in the surface area of the stomach may further decrease drug bioavailability. These changes may be especially important for drugs that are slowly absorbed, such as sustained-release formulations. Use of liquid formulations or chewing or crushing solid dosage forms (if appropriate) may help overcome some of these factors.
Malabsorptive procedures bypass much of the small intestine.7 This technique not only decreases intestinal length but also limits mucosal exposure of drugs and alters intestinal transit time. Mixing of highly lipid soluble drugs with bile acids may be reduced, with a loss of enterohepatic recirculation and decreased absorption.
In addition to drug absorption, drug distribution can also be affected following bariatric surgery.8 Obesity-related factors that can influence drug distribution include increased blood volume, cardiac output, lean body mass, organ size, and adipose mass. After bariatric surgery, these factors are expected to change and, therefore, may necessitate drug dosing adjustments.
I got a comment via email yesterday and I couldn't respond to it because I have no internet connectivity.
The commenter posted that my blog sucked lately and that Why Was That and did I plan on it sucking long time? Well, that sounds ... dirty. Is that better? Innuendos help make a blog better long time?
I will tell you again (which I started to do so in the previous-but-now-deleted-post-which-abruptly-ended-and-was-posted-when-I-didn't-know-it-was-posted-because-I-had-a-seizure-mid-posting... Please excuse the previous three sentence post which is NOW GONE.) that I have been without any connection to the outside world since the Blizzard of 2013 and that's been more than a week.
Shout out to Verizon!
- I have NO landline PHONE.
- I have NO INTERNET aside from what I see scrolling on Facebook and what loads on Teh Googles when it wants to via phone cell tower.
- I forced Mr. MM to buy a cell-phone hot-spot so I had internet access at all inside the house. It doesn't work so well. But, here I am. It's worked for 300 words so far. *hits save again*
- I have NO cable TV, nor satellite, nor much of a DVD collection.
- Did I mention there are four children here? O-o
- This IS the mini-apocalypse. Forbid what happens when we have REAL WEATHER here. 9-10 days of power loss and communication fails for snow? REALLY, 2013?
- We have had ONE HALF DAY of school in the last 10 days, and now my kids on on VACATION.
- The day after the blizzard, we had a death in the family, my kids had their first wake experience last night and funeral today. (All is well, they did wonderfully...)
- Are we having fun yet?
I don't know what is going on in the world other than what I hear on NPR while cleaning my kitchen because that is where the non-internet radio IS.
For example, during a post-wake gathering last night, my children and I surrounded a television that was on the local news.
We saw an EXPLOSION IN THE SKY and thought the world was ending. WHAT IS THIS?! WHAT WAS GOING ON!? It was just the sky over Russia imploding, and very old news, but new to us.
We might be losing it.
Complex partial seizures are often preceded by a seizure aura. The seizure aura is a simple partial seizure. The aura may manifest itself as a feeling of dÃ©jÃ vu, jamais vu, fear, euphoria or depersonalization. The seizure aura might also occur as a visual disturbance, such as tunnel vision or a change in the size of objects (macropsia or micropsia). Once consciousness is impaired, the person may display automatisms such as lip smacking, chewing or swallowing. There may also be loss of memory (amnesia) surrounding the seizure event. The person may still be able to perform routine tasks such as walking. Witnesses may not recognize that anything is wrong.
Complex partial seizures might arise from any lobe of the brain. Complex partial seizures most commonly arise from the mesial temporal lobe, particularly the amygdala, hippocampus, and neocortical regions. A common associated brain abnormality is mesial temporal sclerosis. Mesial temporal sclerosis is a specific pattern of hippocampal neuronal loss accompanied by hippocampal gliosis and atrophy. Complex partial seizures occur when excessive and synchronous electrical brain activity causes impaired awareness and responsiveness. The abnormal electrical activity might spread to the rest of the brain and cause a secondary generalized tonicâclonic seizure.
This morning I was sitting here with Bob and Tristan after the big kids had gone off to school, and we were talking about Christmas presents.
I remember stating out loud, "Not today, brain." This statement is obviously part of a pre-seizure aura, and comes very frequently.
A few minutes later, I seized. My husband and youngest daughter saw, and my husband grabbed my phone and video-taped what happened mid-way through, caught the END and uploaded it to my Facebook page, unknown to me. I apparently just got up after this, walked away and laid down on my couch.
I suppose, after seeing the 86+ 42 comments to this video on Facebook (that I didn't know I uploaded, beacuse Mr. did it, because I have NO MEMORY OF THE EVENT... because I NEVER DO...) it's caused a reaction.
I guess you could say I am surprised by the feedback from the internet.
I appreciate and understand the safety concerns, as I would be equally concerned, and perhaps maybe now my concerns make more sense to you? I live in this body. I have lived in this body with seizures since at least ... 2006. I know many of you have always understood it -- but many don't.
I have been sharing posts, snippets, videos and updates about living with epilepsy for more than five...six... years, and I have had people complain, some unsubscribe, some ask me not to discuss it, some suggest that I have Munchausen's disorder, and that I "fake" it, or receiving comments along the lines of...
"OMG I AM SO SORRY for YOU HOW CAN YOU LIIIIVE THAT WAYYYYY I would just DIIIIEEEEE," I don't really respond well. "OMG, I cannot IMAGINE not being able to...." "You're getting WORSE, you know!" "How are you NOT 300 pounds again? I would just EAT MYSELF to DEATH!"
And, it goes on. I get some seriously shit comments sometimes.
Yeah. I have seizures. I. have. them. all. the. time. So what? I have polymicrogyria. I am considering brain surgery. It is likely that I have a lot more seizures than we know about. It seems like I only notice them when there's an adult home.
I figured that particular pattern out on the last three days the Adult Was Home.
I suppose now you understand why I don't take well to those making light of the disease -- it's not something you can "get over." I can't medicate it and go about my day, though I try, the medication makes me a bit uh... where were we?
I have zero short-term memory left, which is likely a permanent neurological condition.
I cannot work, I have been denied disability twice, and I continue to appeal.
Late Monday night my neurologist's secretary called to say that my PET Scan and MRI appointments were cancelled and please not to come in. However, considering that this was the third (or... fourth?) cancellation in a row my husband called the health insurer Just To Make Sure, and it appeared we were okay - and had all the authorizations and Please Go Create More Debt! Instead of wasting four hours in traffic in total to be sent home -- we waited to the very last minute and called the hospital to MAKE DAMN SURE I could still go in. "And, I ... guess?"
I think until you play this game of insurance-merry-go-NO-we-don't-want-to-pay-for-anything you won't get it. This drags every process out over months. Consider that I have had seizures since AT LEAST 2006 or 2007 (I did not realize what they were...) and that my medical treatment is really JUST getting underway, now.
AND THE INSURANCE COMPANY -- "Well, we aren't so sure she needs that test, could you offer more proof that she needs brain imaging?" Sure! COME TO MY HOUSE Mr. Cigna. Live with me for a week. I'll show you seizures!
The PET Scan was super simple, after I walked in and was given the: "Um, your appointment was cancelled?" I just told the girl at the desk, "Yes, well, we spent all morning on the phone about THAT," and I looked away.
Two minutes later, she's got my bracelet on, and the nurse has my IV in.
You get a simple glucose injection and have to sit quietly for 45 minutes and let your brain rest. I am not good at that, so I got in trouble for picking up a magazine. "BAD, BAD BETH." The scan itself was no big deal, it was quiet, and quick. As soon as I started to feel like I had enough -- it was over.
The MRI. Do not want. I have had enough brain MRIs to know they suck -- they are loud and obnoxious, and I do everything I can to NOT ENVISION my brain being sliced into deli meat. Because I Do. The Whole Time.
These two tests will give a clearer picture of the activity source in my brain like this:
The MRI - the non seizure brain - the seizure brain - the mixed scans - and VOILA - you can see the seizure focus! Again, not my brain, however, my will appear somewhat similar.
PS. If you do not want to receive neurology updates - remember - this is my personal blog. If you're still here, thank you!
Tomorrow I have a series of tests including a PET Scan, as part of the continued pre-surgical testing for epilepsy surgery. Joy. - / -
National Epilepsy Awareness Month is NOW! I am Beth -- and I have epilepsy. GASP! You mean -- it's not ALL ABOUT THE WEIGHT LOSS?!
Whee. It's super fun. Oo Did you know? I bet you might have?
Did you know that I deal with daily auras, seizures every few days (including one in Starbucks in Plano, TX the other day...) and the stigma of not knowing when, where or how I might seize? Did you know that even with my diagnosis -- some of my peers make fun of me and say that I "fake it" for attention? Because They Do. (Thanks for THAT, By The Way. It Feels Really Good In My Heart.)
As part of our mission to help overcome the challenges created by epilepsy, we're pleased to announce our Now I Know video campaign.
When it comes to epilepsy, what do you know now that you wish you knew sooner?
We're inviting people with epilepsy, their friends, family and caregivers to log on to Facebook, starting November 1st, and share through a video what they've learned, and what resources have helped them.
Visitors to our Facebook page will have the opportunity to vote for their favorites and share the videos through their social networks. At the end of the contest, the videos with the most votes in each of four regions, will win iPads, among other prizes.
Select videos may also be featured here on our website and at our National Walk for Epilepsy in Washington, DC. We hope to pool the collective knowledge of the epilepsy community into an easy-to-use resource and to serve as a jump-start point for talking about the disorder with our communities.
I left my house to attend the Obesity Action Coalition last Wednesday morning -- and unknown to me, there was a hurricane coming in. I am now trapped in the Dallas area until the planes can fly again. Whelp.
Luckily and thank goodness, I was saved AT THE TICKET COUNTER by a friend who lives here in the local Dallas-area, otherwise I would have been left in a puddle in tears AND SLEEPING ON A COT IN THE AIRPORT FOR FOUR DAYS.*
And, if you know Beth, she does not do very well without...
#1 - showering. #2 - sleeping. #3 - monies for coffee.
*See also - no RX epilepsy medication. Very, very, BAD. I had enough medication for a few days in case of emergency, but not HURRICALYPSE!
*Thank you. Because. Really, I would be on the floor in the airport for the majority of a week.
Today I am off to the hospital to meet with my neurologist's nurse manager-type person to discuss my plan of care for pre surgical Super Fun Brain Testing.
After meeting with the nurse, I get to have an MRI. "Yay." Though, this is likely the easiest of all of the testing -- because it requires nothing from me than to STAY STILL, DAMNIT.
While I am off today, could you drop a dollar in the Walk From Obesity? It's been days since I have seen a donation. Maybe I can dig up a prize or two when I get home for donations. Thanks, all!
We got up at the crack of early and headed into the city for a neurology appointment today. I told the doctor the truth about Brains Of Oatmeal while taking my current medication, and he swapped me to another medication instead. I will wean off of Vimpat and move to Keppra. I just took my first dose, and we shall see. He mentioned that one of the most common side effects is The Very Cranky, and I mentioned that it's just as likely since I already Have The Very Very Cranky on Vimpat.
He asked me for the umpteenth time, was I opposed to surgery to fix my brains. I said I was on the fence and that I would go ahead with the months of testing as a pre-surgical patient.
For Joy The Things I Have To Look Forward To!
Click for full-size - from http://www.mayfieldclinic.com/PE-EpilepsySurg.htm
I've got the Continuous EEG testing done, the rest come next! Read closely, some are really "fun," like the catheter to my brains!
So. That's a lot of "fun" to consider, so I had to dance.
I started a new anti-epileptic medication during my stay at the neurology unit. It has not worked very well, and I will be checking up with my neurologist this week. The side effects are The Suck. T - h - e suck.