I emailed the neurologist regarding the continued brain melts even on the Dopamax.
His suggestion was to add another anti-seizure medication at a low dose. Because I hate these mini-brain losses I will try it, even if the medication comes with a list of warnings, including IRRITABILITY, among other more scary things.
RAAR. I am already irritable thinking about the co-pay.
PS. Yes, I will be on top of the How Irritable Will I Allow The Drug To Make Me Get because the last meds made me climb the walls like a cornered cat.
I didn't post this yesterday because frankly I am frustrated with this shit.
(This is a ramble, forgive where this post might end up.)
How is that for "open and candid?"
Readers email me and thank me for my honesty and openness, and I appreciate the mail I get, even if I do not really know how to respond to some of it. Why? Some mail is just, "Wow." I love seeing it. I am amazed that I get mostly good mail all the time, and the other 75% it's complete SPAM. I wake up to about 25-50 spam messages in the actual spam folder, most in Japanese or Chinese lettering 手持小型自愛器-時尚情趣, or telling me Bill Gates is buying property somewhere and that I should be interested. During the writing of this post and the cleaning of the kitchen just prior - I got ten spam messages. Thank you Gmail, you catch them all.
Most people are supportive, thankful for help they have found on the page, or have constructive suggestions. I will say it again, I am lucky that I don't get a lot of flack. Sure, this looks like I am just asking for some. But, I don't get it from this particular method of communication. Even in comments, I don't have to moderate much, just spam.
I have had people (not advertisers) ask me to stop using profanity on my blog, and fucking hell, it's my blog and if I get flabbergasted how else are you to know? So, piss on you for twitching because I get a naughty mouth. But, wait, if you can't stand seeing dirty words in print, why are you reading?
If you came to me tomorrow and said that "Big Huge Corporation has offered to be the main sponsor on your little blog, could you please clean up your dirty mouth?" it would be difficult but I would be on that. I don't have any rules right now. That is a real scenario with the Pac-Man world of blogs + companies right now - people have to sell a little bit of their complete candid-ness to you know, sell. I am not the first, and not he last to have to get a bar of soap and shove it.
Why I am rambling on about this? I don't even know. It had nothing to do with my topic, which was, that I had seizure yesterday.
It wasn't a grand mal, it was a partial, but it was a scary one.
You saw me prior to the event. I was here - making a video. It should not have been food related, I had protein, green salad and decaf coffee.
At noon, I got a phone call, and in the middle of the fucking call, I apparently lost my shit and started speaking incoherently, put the phone down and I have no memory of the next few moments. I remember talking on the phone, vaguely feeling "Oh no, here we go again." And that is IT.
I must have been mobile, because, I went and got out of my bag and I ate glucose tabs during this time, because, like every time, for some strange reason, my brain tells me that I am hypoglycemic even if I am not. Every freaking time I have a 'brain freeze' - I either say out loud to whoever is with me, that I need sugar or something along those lines, because the feeling of an oncoming seizure is nearly the same as a VERY LOW BLOOD GLUCOSE. Which, explains why I have been confused for so long, and if I don't test my sugar, I never know - and I cannot function a meter in this state - no way.
I have no memory of this, like every other time. This is ridiculous, but if anything, it's making all of the other episodes seem more clear now. (I have been having these 'brain freeze' seizures since at least 2006. I had one the day Tristan was born. The OB nurses saw it, but the Neurological consult never went anywhere, I was diagnosed with "ATYPICAL FUCKING MIGRAINES." Want some pain pills Beth? ARE YOU KIDDING ME?)
It's like, "SO THAT'S WHAT HAPPENED THAT DAY YOU IDIOT!" Do you remember that day a year ago that I don't remember crashing my car? Oh. About that.
BUT WHY?!
I want to know. And, I will swear so long as I can.
You also recall that the first grand mal seizure occurred within 90 minutes of drinking a low-carb energy drink? Well, it did, I had ingested a 16 ounce can of a sugar-free energy drink that morning in the car on the way to my appointment, and I dropped into a seizure on the floor of the plastic surgeon's clinic.
1: Epilepsy Behav. 2007 May;10(3):504-8. Epub 2007 Mar 8. Links
New-onset seizures in adults: possible association with consumption of popular energy drinks.
Iyadurai SJ, Chung SS.
Department of Neurology, Barrow Neurological Institute, St. Joseph's Hospital and Medical Center, Phoenix, AZ 58013, USA. Stanley.Iyadurai@chw.edu
Energy drinks contain a mixture of compounds, of which caffeine, guarana, and herbal supplements such as ginkgo and ginseng are major components.
Survey of popular literature reveals anecdotal observations of adverse events associated with consumption of energy drinks. However, there are no reported cases in the published literature. We report a series of four patients who had discrete seizures on multiple occasions, following heavy consumption of energy drinks.
Once the patients were abstinent from the energy drinks, no recurrent seizures were reported. We propose that the large consumption of energy drinks rich in caffeine, taurine, and guarana seed extract could have provoked these seizures.
(Apparently, I'm not the "only one." Of course I didn't think I was that special. I bet you there are lots of special ones out there. Actually, just considering how my own husband drives 45 minutes after ingesting a sandwich* should show you that RNY + carbohydrates don't mix at all as it is. We're carb-drunks.)
She says this situation was triggered by a "Gastric Bypass Gone Wrong," as you just heard in the video above. That struck me as very odd, but whatever. She states that she "is sure" that it won't happen again, but:
"Gretchan said she has suffered complications from a gastric bypass
surgery she had in 2005. Although she has had minor seizures, she has
never had a full-blown seizure before Thursday."
I sent my mother to pick up my Topamax prescription, I ran out today. I didn't have the energy to walk up and get it, because it makes me a little bit stupid.
I am lucky I didn't actually walk all the way to the pharmacy. I wouldn't have had the money to pick it up.
She just shelled out $250.00 for my stupid dope. This $250? Will. last. me. 20. DAYS.
I can't afford to take this seizure medicine. I need a job to pay for the medicine.
I just wrote her a check. Now, my grocery money is buying my dope. This is ridiculous.
The reason it is so high? We're supposed to buy my drugs via mail order, and the price is higher if we don't utilize this option, and the price of Topamax is much higher than the other drugs I've tried, even though I bought those AT the pharmacy too. In fact, we're paying full price.
The mail order program takes 7-10 days to ship, after you send in your RX. Surely it's only meant for maintenance drugs, because you can't get anything instantly.
We really didn't pay attention to this before because didn't ever buy long term medications.
I called my hematologists' office where I receive my iron infusions and B-12 injections, the bariatric consult center where I had my procedure and the neurology floor at the hospital where I was treated for the first grand mal seizure.
The consensus is, from those I spoke to, (and I am waiting on a phone call back from the neurology department) B vitamin levels are not checked (except for B12, which is routinely checked in post-ops) unless you "are having an urgent problem that would indicate the need to look at the levels.
One would think - an ER would be urgent? But, whatever, I'm probably fine.
Sixteen of 50 consecutive neurological patients with a diagnosis of
thiamine deficiency showed epileptic (10) or epileptiform (6)
manifestations. A survey of the literature revealed only few reports on
a possible relationship between epilepsy and thiamine deficiency. It
appears that thiamine deficiency may provoke epileptic phenomena in
those patients who have subclinical predisposition for seizures. The
presence of irritative activity on electroence-phalographic recordings
in the patients may be a consequence of a vitamin Bi deficiency state.
The possible pathophysiological mechanisms by which thiamine deficiency
may contribute to seizure activity of the brain are discussed.
Apparently make a big difference. I am not myself. I canNOT wait until this medication realigns itself in my neurons. I am afraid to take my walk, because I don't want to be flopping like a fish in traffic, you know, if it were going to happen anyway.
But, the extra medicine is messing with my head. I feel a leetle bit stoopid and forgetful, more than usual. I am always forgetful, but this is ridiculous. I can't imagine if I had actual duties to fulfill.
"Bashful," "Doc," "Dopey," "Grumpy," "Happy," "Sleepy" + "Sneezy" were the chosen names of the "Seven Dwarfs" in the story of Snow White. <--- Beth on brain altering medications, 'cept for the Doc part, because it's hard to be Dopey and Wicked Smahht. But, actually - on medications, I'm also Quite The Witch.
Did you know this - No, not that I'm a witch - this: From Wikipedia:
The names of the Seven Dwarfs ("Bashful," "Doc," "Dopey," "Grumpy," "Happy," "Sleepy" and "Sneezy")
were created for this production, chosen from a pool of about fifty
potentials. The one name he always had in mind from the start was
Grumpy, or something similar. Blabby, Jumpy, Shifty, and Snoopy were
among those that were rejected (along with Awful, Bald, Biggo-Ego,
Biggy, Biggy-Wiggy, Burpy, Busy, Chesty, Cranky, Daffy, Dippy, Dirty,
Dizzy, Doleful, Flabby, Gabby, Gloomy, Goopy. Graceful, Helpful, Hoppy,
Hotsy, Hungry, Jaunty, Lazy, Neurtsy, Nifty, Puffy, Sappy,
Sneezy-Wheezy, Sniffy, Scrappy, Silly, Soulful, Strutty, Stuffy,
Sleazy, Tearful, Thrifty, Tipsy, Titsy, Tubby, Weepy, Wistful, and
Woeful.
Today I saw the neurologist, and we discussed at length my displeasure with anti-seizure medications and their very special side effects. He was very quick to say that considering I have only had each drug for a maximum of two weeks at most, it's amazing that I have felt the whole gamut of side effects on very low doses. I'm apparently Very Special. In detailing the current brain-melt I feel on Lyrica, he mentioned that the dosing would be much higher typically for my body-weight, and that it's quite interesting that I "feel" every milligram at this level. (I do.)
We chatted about the few instances of apparent complex partial seizures that I have had lately, while ON medication, and that is likely to happen since I am taking so little of this med, and and the others previously.
I shared that I would rather be un-medicated and risk seizing than feel drugged and/or unable to function normally. He took that very seriously, and asked if I wanted to quit meds altogether for a short period and then re-try some. While it sounded very good for a moment, I quickly remembered the grand mal seizure that I was home alone with the baby - What if that happened again? I explained to him that if I weren't liable for the well-being of smaller people, I would go med-free entirely, but since I need to be functioning for them during the day - I need to have at least the Big Seizures under control. Since we don't know why I am having any at all - it's scary to think they could happen at any time - but the medications HAVE seemed to stop me from having a full grand mal seizure. For that reason alone, I should take something, at the lowest dose possible.
Since the Lyrica is also effecting me poorly, we swapped again, and starting tonight, I will be Dopey instead of well, Grumpy, Dizzy, and HUNGRY. At least though - maybe I won't be begging to order PIZZA at 10pm? (I didn't blog about that, did I?)
I've been taking the low dose of Lyric@ for five days, one 75 mg. pill at bedtime, for seizure control.
What do I notice? First, I haven't had any big seizures (that I am aware of) but then again, I haven't had any since starting medications, and this is the third medicine we have tried, all of them have held off grand mal seizures if I was going to have one.
I am still having those maybe-related-to-blood-sugar-changes-but-we-really-don't-know (because that's my theory) "swooshes" that might be "complex partial seizures." In fact, I just had one. I was in the kitchen, washing the floor, when I found myself feeling super-swooshy, and wanted to test my blood sugar - I was feeling very woozy and faint - like I might go down.
This is the same feeling I got in the store last weekend and we swapped medications because it "wasn't working." I told my daughter, "That I needed my pocketbook." I'm home with the kids - and I had enough brainpower to test my blood glucose. My glucose was 76 mg, which doesn't necessarily explain my brain shutting off, so I went back to business and finished the floor (pretty mindless activity in itself) trying to shake off the "swoosh." Had it been lower - or had I tested just prior and saw a much higher glucose reading - it would make sense to me to feel swooshy with a rapid change. (Again, this is my theory, the doc has told me that it's unrelated.)
At this dose of Lyrica, I am still "swooshing," and I am due to increase the dose the day after tomorrow. I don't really want to - because the side effect profile of this drug is very worrisome to me. On this dose, I have noticed some simple side effects: dry mouth, graze-hunger increased, potty troubles and acne. The dizzy/vertigo issues are much less than the last med, but I know with increased dosing it will be more intense, and the hungry-trigger will increase and terrifies me. Other people have noted that this med makes me feel "high on pot," and they get the super-munchies. I can't have that. I can't have the "high" or the munchies, both would make me crazy. It's also got addictive properties - and who the hell wants that?! (Like I have said before, I would make a terrible drug addict.) I know if I tell the doctor I am still "swooshing," he will make sure we increase the dosing, and then I will bitch about the side effects and we will have to swap again.
We are already running out of options, and I have to decide what I would prefer: being dumbed down- unable to speak normally, having a constant spinning head, eating constantly and gaining fat, or wanting to climb out of my own head with constant anxiety and nasty ice queen bitch-ness? Which would you prefer?
(I'm not looking for drug suggestions, just venting. I see the doctor on Monday for a follow-up.)
I'm off to bed, to take my first possibly addictive substance that will make me fat and swollen. What a proud day! Yes, I am being sarcastic, and yes it's again highly unlikely THIS will be The Medication to end the search. But, I will feel no pain! Wait, I didn't have any pain? Didn't all of this initially START with that "atypical migraine headache" two and a half years ago? Yep.
Yesterday after I showed my needs that are special in the bread aisle, Bob emailed the neurologist, who promptly responded with "it's not working," so we swap meds again. What I am quickly learning? No medication that effects your brain in any way is without negative side effects. Every medication triggers unsavory side effects. People like me feel e-v-e-r-y-t-h-i-n-g. Like? Right now? My right hand fingers and right foot, are filled with carbonated bubbles of ginger ale. This? A Side Effect of Zonisamide. It actually is. Who knew? It's driving me ape poop. Last night? I am laying in bed shaking my leg out to get the bubbles out.
"Come leg, go flat, it's time for sleep." If I wasn't crazy previous to taking brain-altering medications, I Am Today.
"Beth, what ARE you doing?"
"I'm getting the bubbles out of my foot, it's got gas."
"Is it medication time?"
Obviously something like internal bubbles aren't such a big deal, at least not like walking into walls "that so wasn't there!" and missing the shelf in the fridge and dropping your fresh Chinese veggie soup sideways, those are Big Deals.
I hate losing good soup.
Sometimes realizing also the The Drugs have made you into even a mean nasty rotten whore of a bitch than you thought. ;) (Who, me, Well, I nevah!)
My response, "Aren't I always this way? Get over it."
"Actually, no! You're usually nicer Than This!" he says.
I don't know if it's the medicine or if it's just me in general - but my brain feels at times as if it wants to squeeze out of my ears like toothpaste out of a tube, slow and squishy. We were grocery shopping this morning, and I got all dizzy-like and squishy brained and felt the "swoosh" coming (I felt that I was aware of feeling "faint-like," wherein I started calling for Bob, just in case I got into a dangerous predicament, like, tumbling into a pile of glass jelly jars.) He said I was two aisles away, and he could hear me, calling, embarrassingly enough, for him, I made my way over to him and the kids, and he had me hold on to the shopping cart. I do not remember this part, which is why it was not part of my initial posting which I am now editing for clarity, because I just noticed how much of a mess it was.
He says when I do "this," I sound "slow," and that I do not realize how I am speaking. Bob is blaming it on the medication, saying that it "looks like I am supposed to have an actual seizure or something but the medication must be stopping most of it, except it gives me 'stupid' side effects."
It happened again, just a few moments ago, at home, while sitting quietly, and if you subscribe to my feed it might have gotten to your feed reader, I posted something about my "sugar being really low," and subsequently deleted it.
That's bullpoop, my sugar was fine, I was out of it again, for no particular reason. It has mostly passed, but this is getting quite tiresome, it almost seems like taking meds is triggering more of these symptoms than I had to begin with, and it's making me feel like I need medication to cure that the medication is doing to me.
I had a long post all typed out about a swoosh while pacing the mall today, and our interweb died and took the post with it. So, needless to say, I had a swoosh at the mall. Whee! I am not re-typing the details, well, maybe I will, in a few minutes... but... for now:
DH says, "That's scary."
I say, "But, I have been dealing with that for two years - is it only scary now because there's a label for it?"
What is more frightening? My symptoms for those "swooshy" or complex partial seizure episodes and hypoglycemia episodes are nearly identical, and until a needle is in my finger - we have no idea what the hell is going on.
Today - I was standing in the Apple store, jabbing myself, only to see that my glucose was perfect, but I couldn't hold a coherent thought or stay still.
(I went to my primary care physician presenting with these exact symptoms, describing very clearly what I felt - and she told me I was nuts.)
A year later - with no diagnosis - or six diagnoses depending on how you want to look at it.
Since going to the PCP with a complaint of feeling like I had "hypoglycemia," short term memory loss, spells of word-recall problems, near-passing out, and "swooshes," etc. I have been diagnosed with:
I guarantee the list grows, too, before it gets figured out or "cured." (I still sorta giggle at the psych results, because - I had low blood sugar during the freaking test.)
Beth, aka "Melting Mama" is a veteran four year plus Roux en Y Gastric Bypass post-op, along with her husband, and a growing list of family members.
She's sort of been taken over by "Life After Weight Loss Surgery," hence the blog. It started as a means to log my weight and "diary entries" and grew. There's now more than 2,300+ posts and counting. You might want to search to find what you are looking for.
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