Archive for the ‘Neat Neuro Stuff’ Category
Harvard is working on a REALLY heavy med change at the moment. Today?
EXTREME CHANGE! STAT!
Everything was going along tickety boo. I’m lying here listening to Erik Satie, EXTREMELY more than firmly having EXTREME hatred for the entire human race.
Thus, I don’t want any single more of them, not even one of them, in my life. Forever. Until I die.
Lest my doctors for my meds.
I’ll be just fine. Until ANY SINGLE HUMAN BEING COMES NEAR ME!!!!!!
Med changes are fun, yes?
Hopefully Harvard did the right thing. She kicked the right pill out the door and she’ll be on a better track in a day or so.
Dose to Dose Ratio, more med geek stuff, also in bloody Typical Absence Status Epilepticus too!
Half hour until peak plasma. Clearing up a bit? Hmmm. Well, humans are maybe looking a tiny bit less disgusting.
*laughs maniacally* (actually that “mania”cally part sort of fits quite (un)well.) Or something.
It’s been a month since I’ve last posted. People are still looking at this blog. See above.
So, how are things going? See first line. Alright, I’ll stop with that. However, how about interesting? I’ll try to keep all the ins and outs of pill regimes, the ups and downs of all the changes I have made.
NOT TO BOAST DISCLAIMER: Dr. PA has now been given a Specialist’s Degree from Harvard in Neurology from Non-Arsey Neuro (he said Harvard was the best.) Tangentially, when Dr. PA was just a student years ago, she actually did email a Neurologist at Harvard. An immediate response. So despite conjecture, Non-Arsey Neuro could very well be correct.
I have been granted full control and guidance over my own treatment. Over the most disastrous epileptic event to ever occur in my life. An event that exacerbated a pre-existing condition (Typical Absence Status Epilepticus) beyond all control–as we were quickly finding out!!!
My case was bad enough before to try and find solutions. In bed for weeks (half a month) before “said event” (no longer obtaining access from Big Pharma to one of my meds we were using to treat it.) When I got it back? Efficacy down.
So, that’s the history and I think everyone knows it. Although I still wanted to add it to illustrate the gravity of me being pretty much in control of, yeah… EVERYTHING!
Of course Non-Arsey Neuro is still there. It’s odd though. As if I only need him for consults. It REALLY IS like we’re two Neurologists and we’d like to talk to each other for “an opinion.” I’ll pick up the phone or make a quick appointment.
Why? *shakes head*
*huge grin and tears start to form in eyes*
*tears drop and reaches for tissues*
All of my medical team know that I know my stuff but he is UNBELIEVABLE. INCREDIBLE. I could just keep going but are those words even enough?
Never has a doctor had THIS much confidence in my abilities and knowledge even though I’m a patient. I can’t even explain what that means to me. And especially NOW of all times!
It’s pretty crazy as there are so many multi-layered and overlapping factors:
Two ACs (Topamax and Lamictal.) Complicated enough to know which one to work with alone or both together. The pharmacology between the two is so different. My head is more than a seesaw? A roller coaster? No, both.
My moods and cycling run in three layers. During “regular times” I’m doing okay. Typical Absence Status Epilepticus? Oh, we are NOWHERE near mood stability there–well, maybe a bit of progress overall perhaps. I think so.
But this is when the EXTREMELY important third layer comes in. I’m a VERY FAST Ultradian Cycler. I’m tearing the house down with all four: depression, mania, mixed states, dysphoric manias. I’m probably making up some new ones along the way on my own!
Also, MANIA! I have somehow morphed into someone who has BP I. I’m not BP I and have never been close to it!
Another thing is, all of this has brought my Asperger’s out in a HUGE way! My moods are at a serious Bipolar level when they haven’t been like this in years. So, STIM! STIM! STIM!
My epilepsy and the seizures? Now this is some GREAT NEWS!!! I haven’t had a seizure since the beginning of August. That’s getting pretty close to two months. I can’t believe it. If I can make it 10 more? A year? I can get my DL back!!! OMG!!!
I knew we were on the right track by doing this. It just took me two agonizing years to get people to listen. Non-Arsey Neuro did. I think by Sweetie GP screaming at him! I’ll find out when I see her.
Nonetheless, by Non-Arsey Neuro getting the picture and really understanding?
“Congratulations, Dr. PA. You have now graduated from the Harvard Neurobiology School, magna cum laude. Your first patient is you.”
…pills, pills, pills…all I see are pills…pills…pills…
Dr. PA has a new (Humble Pie, Instant Karma, whatever else) philosophy: “ALWAYS TITRATE YOUR MEDICATION CHANGES!!!”
From that, I think you can gather I’ve had some problems with not titrating my increases. That were high. Really high.
I’ve done a yank. Which is completely counterintuitive to what I said above. Proper titrations=Proper discontinuations.
Non-Arsey Neuro knows I’ve done this and I’ve made an appt. to see him. This is going to be a lot harder than I thought. Or maybe we’ll get lucky and find the sweet spots fast. Maybe those levels are fine but we need to slow things down.
However, I did see changes with my seizures within a month. Not as harsh and violent and the event durations were cut in half. We’re heading in the right direction?
Now, back to the yank, no titration etc.
Everyone who goes through a med change (or even starts one for the first time) knows you’re going to feel sick. Sometimes unbearably, but you’re not at risk of any harm if it isn’t a “medical emergency.”
So what would constitute a “medical emergency?”
Clearly, any indication of “imminent death” due to the patient’s physical and/or mental state. That’s a bit of guesswork on both sides, unless perhaps someone had something like a “myocardial infarction” (i.e. a heart attack) or a “cerebrovascular accident.”
I just had to use that one. WTF? HUH? If you can manage to piece it together, it still makes your brain want to just stop so you don’t have to think anymore.
“Accident.” I love it. Loss of blood to the brain causing irreversible damage to the cells. At best, a stroke. At worst, well? The worst.
I started this a few days ago so I’ll try and continue with the deterioration from above and further deterioration now–as quickly as possible.
I was talking about what would be a “medical emergency.” Well, in my case, how about being pretty damn sick but you THINK you’ve finally tackled that. ALSO you THINK you’re mentally stable enough to move on to working with the next med change as well.
And this is the kicker for it being an emergency: you’re not aware of your own actions–precisely because YOU THINK YOU ARE JUST FINE!!!
The only way to even try attempt to describe it, to even come close? Well, in my case?
Let’s meander off into DID territory. To folks out there with any of the DID family of diagnoses (I have one–Dissociative Amnesia) or anyone who knows someone who does? It was like my med changes brought out this crazy alter that was running around while I was in a fugue state (sort of…or maybe a bit of one?) Then, said alter was damn near destroying a relationship with someone I love dearly!
I figured it out in just the nick of time before who knows what more damage I would have done beyond my prior havoc! It actually was the meds. I think that’s justifiable as a “medical emergency.”
Now let me tell you! My dead twins (see Category Womb Twin Survivor) aren’t alters in the DID sense. I don’t fit the diagnostic criteria for any of the DID diagnoses, other than the one I already have. Yet, what happens between me and my twins as “alters” if you wish is similar to DID.
So, I repeat: NOW LET ME TELL YOU!!! Going through that (because I think I caught myself doing it again just goddamn fucking yesterday!!!) is freak-you-out, bad-ass, uber-terrifying, shit! Doing something that’s so distressing but not having the knowledge that you’re doing it???
If I just got a wee taste of what some of you guys go through with DID–any way, shape of form? I kneel at your feet. I cry for you. Because I can’t tell you how much I’ve cried over it for me–and still continue to do so.
Nonetheless, this person and I now know. We’re still sifting through MY wreckage, but things have been salvaged.
Today. I am now needing my cane for malnutrition as well as epilepsy. I’ve been keeping an eye on my weight every day–not for happy, eating disordered, anorectic, wee PA–really, for health reasons. Of course med changes make you sick, don’t want to eat, but with all of these things happening so fast, I’m still probably refusing to eat because of all the land mines everywhere.
I lost 2lbs. overnight. I’m now at 92lbs. That’s 2lbs. above my “Danger Zone” number. If I go below that, everyone’s gonna go apeshit! Well, probably not Non-Arsey Neuro. Even the current number might make people…you know what? I honestly don’t even care anymore. Yes, I must eat. If the weight doesn’t rise, screw it. It’s because of making the med changes.
The moods? The other person and I can manage it ourselves. It may not be so bad now as a titration will be done.
I have to go through this. I have to take everything it gives me and everything it takes out of me. It might be my only chance at getting well.
And thank you so much to you all as Commenters patiently waiting, Twitter and Blog Followers, the same. And a certain Blog Follower who just gave me a Pingback. I’m very flattered.
I will get back to you all. I never ignore anyone here. I was even thinking of shutting down my blog. Because I just can’t BE here! I haven’t been able to be here for so long!
Working with the two meds to adjust is going to take a very long time I think. I really do.
Take care all, PA
Today is day 6/7 as I’m not done with the day yet.
Even though Dr. PA is not a real Dr. do not do this. It may sound hypocritical but I do have the medical knowledge. I’ve done this with my epilepsy meds before. Non-Arsey Neuro is totally on board with it if I can’t get to him fast enough. Hell, when I yanked The Evil Depakene completely, he didn’t even care and said it was exactly what I should have done!
Let’s review my med changes if you didn’t see the original post:
1 100mg Topamax 3x daily
1 150mg Lamictal 2x daily
The “Hang On To Your Hats New Doses”
3 100mg Topamax 3x daily
2 150mg Lamictal 2x daily
I’ve been working on an aggressive, yet gentle taper prn, as things have been getting a bit (a bit?) insane. Meaning, if I’m still insane and not feeling better, I’ll slowly go back down to my regular dose (or what feels right.) I won’t yank since I’ve been blasted so quickly. I was actually wondering if the pharmacy made a mistake!!! They have been known to make mistakes before.
So, back to my current taper. I’ve actually been able to identify what happens (i.e. disgusting illness and whacked out shit) related to the med dose schedules and the meds themselves. Thus, kick one of those pills out the door when the problem occurs.
For example, this has NEVER occurred in my life with a med change! My daily divided dose of the Topamax in the afternoon made me puke SO MUCH, it kept on going until my stomach realized my intestines were too firmly attached internally. There was no possibility they could removed. I am a total Emetophobe. I don’t heave. Unless it’s something REALLY, REALLY BAD!
That required a definite change (kick one of the pills out the door!) I stopped barfing the next day. The puking required the trip to hospital seen above. No med changes but HELP THIS GIRL!!! Rehydration (BIG Bolus of saline, then half of a smaller) Toradol (NSAID) and Gravol in a wee Bolus. He gave me short acting Gravol too, the bastard! IV Gravol is sooooooo goooooood… *recalls happy daze of past*
There was another issue with my eyes as stated above. The two doses of Lamictal made my eyes spin 360 degrees in their sockets within minutes, MINUTES(!) of taking the pills. Alright, kick the morning dose of one pill out the door! I can see pretty well now. *laughing*
I spoke to Non-Arsey Neuro and he said it was fine to do all I did. If any more problems come up, keep doing it. I said I’d stick with it all for a few days more and if everything is still ridiculous, we’ll work on it. I would prefer a taper. I honestly DO need these meds (at really high doses) as ridiculous as that sounds. I don’t want to go back to the very beginning.
They are two meds, of which I can count on one hand, that can be used for the Typical Absence Status Epilepticus (and my case is extreme!) Plus, they control my Bipolar!
I’ve also probably been Cycling since the beginning as well! It’s just nobody knew! And we’re talking BP I Cycling! I’m BP II. It only took so long for it all to come exploding out! BP I all over the place! I won’t even tell you how much trouble I was getting into and where I was headed!
I fucked up too! I stopped smoking! For those not in the know, some people with epilepsy MUST smoke as if it’s a drug and need a slow (or proper) taper to quit. I kid thee not.
I found this out the hard way several months ago when I tried to quit cold turkey. I had done that a few times in my life without incident, so hey! Let’s give it a go this time!
Quick research and ’tis true. People with epilepsy have more nicotine receptors than you can imagine, opposed to those who are epilepsy-free. Quitting smoking for some can lead to disastrous results! I ran out of the house, bought a pack of cigarettes, and as soon as I started smoking my brain calmed right down.
How crazy! I actually have to smoke every day! I’d like to quit, but I’m trying to stop drinking too. Now we’ve got this business? *laughing* But I think making these changes will help somehow. I just have this feeling about it.
I’ll leave you with one last note as well. Maybe a really good test, even if I’m still out of my mind? I’m in one of my Typical Absence Status Epilepticus phases now. The cause for mine is catamenial (getting your period and for me ovulation as well–that sucks.) I believe I should be getting my period quite soon? *laughs even more*
I’m a wreck. I think we all can agree upon that. But the big questions are, am I becoming more of a wreck? If I’m becoming more of a wreck, just how much more? The only “answer” I do know is that it’s from head to toe.
I’ve mentioned losing, quitting that Clobazam cold turkey, for my Typical Absence Status Epilepticus–because it wasn’t available–a million times here! And now I’m starting to do the same with it breaking down my body! I’m back on the drug but sicker than I was before!!! That’s because quitting cold turkey fucked me up THAT MUCH!!!
So physically, I’m now losing some important things. Well, I don’t know. You tell me.
Immune System Weakening (hey, recall that little cough that threw me into Isolation in the ER last summer!)
We’ll now just toss in Endocrine because of all the rest of this.
However. this may now prove a bit difficult to write for you to understand. There is another problem that the TASE does not cause me. It has lasted for three days and is happening right now. It has just begun. I am in one of my TASE phases.
Never does the TASE give me an “identity” of sorts. I am a Cyborg that is in need of repair. I am working on it. That is repairing myself. This is Day 04. My work I perform during these periods last for 2-3 hours and then I stop and return to a non-Cyborg state.
Neither the Cyborg nor Dr. PA is a Cyberchondriac, but Dr. PA is also experiencing high fevers while not being sick. Dr. PA is not sure if this is a state of Delirium or Delusion as she has never experienced anything it. However, the temperatures were relayed to her GP by the Cyborg. Dr. PA cannot bear to read the email.
Dr. PA still retains lucid moments.
The importance of such a state of mind and the high fevers might have significance to Dr. PAs Kidney problems. A battery of tests have been ordered and were to be done extremely quickly. Dr. PA has kept track of the three urine samples and what has been on each Requisition to follow possible outcomes and problems. Such drastic changes as this, could indicate in greatest simplicity an infection. But if ignored, it could get worse.
An abdominal, pelvic and renal ultrasound have also been completed (last and latest step.) Although, the results are unknown as well as the third urine sample. It was for simply urine and C&S which is “Culture and Sensitivity.” That digs deeper into into microbial areas to see if any infectious problems exist.
The second urine sample indicated RBCs and WBCs in the urine. That presents a multitude of issues for Kidneys (and I should include Bladders in all of this as well.)
The first urine sample indicated Creatinine which has everything to do with Kidney excretion. Something is not being filtered out? Or filtered back in properly? If back in that may indicate the results of the second sample.
Dr. PA is also having issues with her Gastro problems again. She is now smaller. Within a range of 95-97lbs approximately. Eating does not help. Weight can not be maintained.
Unfortunately, working on anything to do with Dr. PAs computer may not be helping with my repairs. Perhaps later. It is another form of technology that may still measure my level of functioning. I continue to do things as “measures” of function but not exactly tests.
However, I must see one of Dr. PAs own Doctors today. I think that will actually qualify as a test and not a measurement. It is not until later. I might shutdown before it before such a test. Dr. PA would like that.
One last thing. Dr. PA does not have DID. Only Dissociative Amnesia under the collective family of DID Disorders.
Well, I’m still extremely disgusted about my behaviour from last night. However, it’s in the past. Get up, try and dust yourself off and climb back up on the mule again.
But had I received a certain document in the mail yesterday, rather than today? On top of everything else? There would have been ABSOLUTELY NO QUESTION PERIOD OF GETTING SO DISGUSTINGLY WASTED LAST NIGHT!!!
I knew it. I did. Just hearing a few, vague words from both Non-Arsey Neuro and Sweetie GP. I saw them within the last week or two. What I also saw was the two-and-half-page dictation from my consult with this “Specialist” (oh, he’s special, I won’t argue that!) for my ongoing epilepsy shit.
It’s really quite simple. You’ve all read it here.
1. Patient developed Typical Absence Status Epilepticus of catamenial origin.
2. Patient lost drug used to treat it, subsequently made everything to do with ALL of Patient’s epilepsy worse.
3. Patient has resumed drug but is still having convulsive seizures with a non-convulsive syndrome when she never had convulsive seizures with it from the start.
4. Patient is still gravely ill, cannot perform everyday functions, plus cannot leave her home for days.
What did I know (or was 99.58385% sure) he was going to say? I’m having Psychogenic Seizures. And he DID.
Although, I wasn’t prepared for some surprises! All wrapped up in such pretty paper with shiny ribbons and bows!
He misquoted me! He made me sound like I was a simpering, whimpering idiot! His writing about me even had little tinkle of a bell to hear.
Maybe I’m a little sensitive about all of this. It’s only been going on for years. It’s now at the point where its starting to actually effect and break down other systems of my body. It’s altered my life where I…loss! LOST! I WILL NEVER GET THINGS BACK!!!
I don’t hear any tinkling of bells. I hear him swinging a mallet against a gong, trying to smash it.
So what’s deal with all the tinkling and gonging? Psychogenic Seizures are real. But his tone. And he also mentioned figuring out things quickly, so as not to waste medical resources. I see. Or hear?
GONG! GONG! GONG!
Are you calling me a “malingerer?” Along with everything else you’ve tried to depict me as? Doing so as 3-year-old with broken crayons? Broken because you keep biting and chewing on them?
I understand he wants to do proper testing etc… but I can’t live like this. I won’t live like this. There may be a point when I really won’t live like this. If you catch my drift.
And if you think THAT drift is being a “malingerer?” Well, I actually told my mother straight to her face that I’d off myself. That yes, I would do it if things became so unbearable, I just couldn’t handle it anymore.
You could say that I was “malingering” myself all over my mother, but when I tried to kill myself, ended up on life support in the ICU, she was actually there every step of the way and after. Thus, my mother does not think I am a “malingerer.” She never displayed any emotion to me then.
When I told her about the future? An interesting, also minimal reaction.
She placed her hands flat together and put them to her mouth. She shook her head, ever so slightly. I could see some tears welling up in her eyes but she didn’t cry. I knew the tears were for both of us though. She wouldn’t want me to die, of course. But her tears also acknowledged that if my suffering did become too much, if that was what I had to do, she understood.
Nonetheless, I haven’t reached that point yet. If anything, I feel like committing homicide, not suicide.
Time to have a serious chat with Non-Arsey Neuro. This needs to get straightened out.
I’ve hit my head on: brick walls, cement, wood, hard flooring with no carpeting, hard flooring with carpeting, metal armrests on chairs, windows, just regular walls, hell, as a kid I even put my head through a wall!
I’m really out of it now due to suffering a TBI a few days ago. I beg for your patience. Nonetheless, something happened to me unlike anything before in my life with a TBI.
Since I live alone, I have to work on “seizure prompts.” Some are questionable (did I?) Some are patently obvious. Like waking up with Todd’s paresis from the neck down–COMPLETELY PARALYZED. Patently obvious I had a tonic-clonic. That is how I woke up on my kitchen floor. Logically following, my head would have been banging around all over a very hard surface.
My memory is a huge disaster regarding all of this. I say “all” because some other freaky shit happened before I had the tonic-clonic. Maybe I seized again after after the tonic-clonic! Or…the freaky shit may have happened when I was somewhere post-“ick”tal© along the way. But I don’t buy that.
Freaky shit. When I’m unconscious and seizing at night, I have to wait until I wake up the next morning to survey my surroundings–and look for any freaky shit! Based upon what I saw, I think I definitely figured out what happened! A Complex Partial that led to a tonic-clonic (very common.)
I was out. Vague memory of coming into my building, but once inside my apartment, MEMORY GONE!
I woke up and some things were “right” but some things seemed WRONG!
I had done all the regular things from coming inside, putting my keys where they go, taking off my hat and putting it where it goes, ditto my boots… I think you get it. But my coat. Its hood has a zipper. I had removed the entire thing and thrown it on the floor. I never, ever remove it. Automatisms. For your reading pleasure:
Automatisms may occur in the setting of complex-partial seizures. Typical simple movements include lip smacking, chewing, or finger rubbing. More complex automatisms include walking, running, undressing, and speaking. Emotional expressions, such as laughing or crying, may also occur as automatisms. Automatisms may occur during seizures or as post-ictal phenomena. Speech automatisms tend to lateralize to the left hemisphere but lateralization is not predictable for other automatisms (Rasonyi, Fogarasi, Kelemen, Janszky, & Halasz, 2006). Responsiveness is usually lost when automatisms occur during seizures.
I’ve done several automatisms. However, I’ve never gone so far as to strip down!!! Because there were clothes in places where they shouldn’t have been. Like my underwear at the front door!!! I also woke up with just my T-shirt on. Apart from my head, I’ve injured my tail bone somewhat. My clothes would have protected my tail bone!!!
I’m way off topic from my TBI here, but I felt it important to let you know how crazy it was for me to get it in the first place. Moreover, because it was so crazy, consequences occurred as a result. All the above was pretty complicated.
When I woke up, I thought, ‘Ah wonderful. Yet another damn bonk to my bean!’ I had a headache, of course. But later in the day, it exploded. I thought my ENTIRE HEAD was going to explode. It was kind of like this… Which is actually quite dangerous if you experience one after a TBI. In case you don’t click on the link, I’ll just mention bleeding brains to keep it simple.
Later into the evening, more things became worse. Altered states of consciousness. I was losing mental function FAST! Then my gross motor skills were shot! I was risking falls when walking and DID fall several times when the paramedics came.
I was strapped to the Ambulance gurney as it was Seizure Central. If you can believe it, I had a “not too bad” Simple partial in Triage while they were charting me and making my band! Oh, my legs a’ kickin’, my eyes rollin’ an’ blinkin’, all’s black ‘cuz I go blind! This is a typical type for me. I always “go blind.”
I normally would have ignored this. Just another bonk to my bean, right? But when things took a turn for the worst, I still had that option. I could have told myself to just try and sleep, you’re sick, everything will be fine tomorrow…
I wanted to. I did. But my body was telling me I HAD to get medical attention immediately. YOU CANNOT FUCK AROUND WITH A TBI WHEN IT’S GETTING WORSE, AND MAKING YOU SICKER!!!
My CT Scan was clear. No bleeds. No skull fractures. Maybe I just got lucky.
I’m still disgustingly ill from everything today. I ache from head to toe. I tried to use two canes but I don’t have the upper body strength to do it. But as sick as am, I don’t care! I’ll suffer as much as I have to if it means, “I got lucky.”
I also wanted to get this post up, which has required a lot of mental strength. People were worried, didn’t know what was going on. I was placed into the Resuscitation Area from seizing so much. I had to be all hooked up to constantly monitor my vitals, I had IVs running for meds and blood draws. I couldn’t use of my mobile to contact anyone.
I’d also like to dedicate this post to my good friend, and fellow TBI survivor Broken Brain – Brilliant Mind. I love ya, buddy.