Archive for the ‘Neat Neuro Stuff’ Category
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.
I was going to write this earlier today. SNAOK? Can you figure that one out? Yes, you can. You are all smart.
I want to try and keep things as stable(?) and functional(?) as much as I can around here as possible. The same goes for Twitter, too. That is until I
might completely lose my entire mind and body simultaneously. This is all regarding the post I wrote yesterday.
The nightmare has begun.
I kept inserting that in the post between pieces of information. I am not lying. It is and will be a nightmare. Worse, actually?
Perhaps I’ll get lucky and it will be a brief nightmare. I’ll wake up so scared that I’ve pissed and shit my pyjamas, but it’s alright. I’ve got my Clobazam back. Clothes can always be washed.
However, has the nightmare begun with something else? Mind-Body Connection?
I am presumably within the next Typical Absence Status Epilepticus phase–my body is speaking to me.
This always happens. I feel better when I wake up and get going. But I then deteriorate as the day goes on. The stress of this made something funny happen, I think. Well, curiously, oddly funny.
I was talking to a friend who is going to help me with grocery shopping today (how the hell am I gonna manage…) At first, I was speaking alright. But as I continued, I started to become almost incoherent. At some points I could barely speak at all!
He’s the first person who has EVER been a witness to how quickly things change when I get sick. And that was nothing! That was just me talking! Not even close to everything else that goes on! Moreover, I haven’t even lost the med (yet?) That was just the stress “talking.”
The nightmare has begun.
I subscribe to an online newsletter from an Epilepsy Organization. Thus, it is “forsooth.” Two weeks ago there was a great big “WARNING” like in my title, except in their title, things continued in upper case. I would have been a fool to try and hope with all strength and power that this wouldn’t happen–but I am a fool and I did hope.
The nightmare has begun.
Exactly like a year and a half ago. June 2011. The suppliers could not get my Clobazam into any pharmacies–or at least not enough of it. I need it to treat my Typical Absence Status Epilepticus. The supply chain went dry and I had to quit cold turkey. It damn near killed me and I’m still trying to recover. A year and a half later.
The nightmare has begun.
First Step. Work with Non-Arsey Neuro. We came up with the most pathetic strategy IF this happened all over again.
Second Step. Call my pharmacy to see what’s happening on their end. I did today as I’m due for all of my refills.
The nightmare has begun.
My pharmacy is already screwed by the suppliers. However, for at least the next month (of my new script) they have enough in stock. Or so they said. I only have a month’s supply in my bathroom right now. Last month’s.
The nightmare has begun.
I contacted my old pharmacy who basically held my hand through the hell of losing it before. They don’t see a problem…yet? They are going to try and start ordering as much as they can, as fast as they can, and set it aside for me. However, the supply chain could disappear within days just like it did before. They’re going to keep me constantly aware of everything just like last time. And vice versa.
My current pharmacy is not that loving and caring. Fat chance. If they run out of it and can’t get more? That’s it. They can keep trying but obviously I will probably have run out of it by then.
The nightmare has begun.
I’m so unbelievably scared right now. If I lose this a second time? The results could be devastating. I’m not trying to sound like a Drama Queen. I’m actually being very serious.
The nightmare has begun.
Every other Anticonvulsant other than what I’m on (and what I’ve tried) will make it worse. Except for two. Two that I’ve never tried and who knows? Plus, a very whacked out drug that treats a shitload of other things, but it still could be tried. Along with the shitload, there is an indication for catamenial epilepsy. However, could I actually convince a Neurologist to go that far?
I’ve been crying all day while trying to “problem solve.” VALIUM!!!
Gravol too, as I felt like I’ve been going to puke up (and out) my entire gastro system. Actually, time for more? I’m about to start crying again and barf…
My sleep’s gonna be a mess, but sorry! Take one more Valium than prescribed? Just for today?
So yeah. This place and everywhere else I am, may get exponentially, seriously, more fucked up. Because I will be.
Ah, I’ll add all of my diagnostic Categories as they got exponentially, seriously more fucked up when I lost my Clobazam the first time.
PRE-RAMBLE: I’m out of my head. I hope you can be patient. It’s been taking me a long while. Midst way through I’ve only now realized I need music.
And a cigarette.
Good luck reading. Thanks.
I think I might have mentioned this somewhere. Twitter or a blog comment within the Detox posts. Yes. posts, I think.
Allergies are funny (or not.) If you have one and you’re lucky, it’ll go away. Vanish out of thin air. If you’re just you, pick a card, any card. Random. Yes or no? Will you get nailed?
If you’re unlucky? You can get one. And it could be BAD! It could move around all over the place.
There are ones that are silent, at first. They can hide and grow. Almost sitting a cave and just waiting for the right opportunity. Maybe it won’t grow if you’re exposed again. You’ll be fine.
Or maybe it will and you’ll be fucked.
At least I’m lucky enough to not have a prior reaction to a bee sting, get stung again and go anaphylactic shock. Yes. That can happen. Although I did have a minor reaction to a bee sting so I freak out if one comes near me!
If you didn’t read the Detox posts, I’ve developed an allergy or intolerance (as I wrote semantically irrelevant) to beer–or maybe something in it. So did that mean just beer or all alcohol, together?
I started experimenting with a bit of red wine lately. I felt okay.
Fuck. I had some tonight and I feel SO SICK. Just like the beer made me feel. I want to die. I’d barf if I could but a) I’m Emetophobic and b) my brain is too confused to comprehend throwing up, and if you can believe it c) my gastro system is even more confused. It has no clue how to throw up at all.
Right now, I have taken no meds to try and treat this.
More exposure. To an allergen or whatever you wish. I don’t think I can ever drink again.
God, now I have to figure out what to do with myself! *laughing* Gravol! Ibuprophen! Meds! Valium! LOADS OF WATER!!!
Anything and everything in the arsenal. Stop typing. Enough computer screen.
Okay, now. Med-in-di-cation. I’ve shoved everything down my throat. I even poured enough water to do it, I spilled it all over myself! I have one more pill in reserve. My Valium that is a bid prn. You can bet your ass I’m going to use it after trying to chill with some music.
In some way, I kind of had a feeling that this would be this case. I’ll call it Bad Karma for now?
Detox Day #5 was yesterday. Not so good.
I woke up so completely depressed I tried to keep things as dark as possible in my apartment. I screamed at the sun to fuck off. I only left my bed to go to the bathroom to fill up my water bottle, piss after drinking said water, and change the most “make-you-want-to-rip-your-heart-out” CDs. Then I lied not moving at all in a rather(?) significant Dissociative state. After a long time I think I moved. The sun went down. All was black. *sighs* I guess I had to turn on a light.
That’s why I didn’t post a damn thing on this blog. Although, as the night moved on, time for some more Bipolar hypomanic euphoria! That’s how I ended up actually looking at Twitter when I couldn’t be arsed to at all earlier. Maybe that godawful depression was linked to some Bipolar activity as well. I didn’t care. Until the euphoria ended pretty quickly and I was plunged into a state of depression again.
There’s more to the picture than all of this Detox stuff happening now though. Look at what time of year it is! Not good for me. I thought if I maybe went to my mother’s place it might help. At least people would be around me? Or something? No go. Her husband has prostate cancer and is deteriorating in other ways. She needs to be with him 24/7. I can’t make the trip on my own. At least not now.
Fine. Another Christmas alone. And I already know it’s going to be a bad one. I don’t have to “wait and see” like other years. I’m going to “fight” to not make it bad. Pfft. Well, I can still try. Pfft.
More family bullshit went down, there are more Christmas triggers than just family, let’s toss my epilepsy in here now–Typical Absence Status Epilepticus. Am I missing anything? If so, does it matter? That’s enough. Go lick a frozen pole and get your tongue stuck to it so hard, it has to be cut off with garden shears.
Oh, I’m not talking to you guys if there’s any confusion.
Thus, now on Detox Day #6, I have no bloody clue what is going on. Although, I do think I am feeling better somewhat in that area. Maybe all of the neurochemistry theories that I mentioned in the previous posts are proving to help? Or, it could just be the time factor. I just want to start feeling better. Ah, I think I forgot to mention the headaches every day. Like someone had taken an axe to my skull. They are gone now. Definite improvement there.
Still, a thought last night. When I get well, what if I can’t cling to what is in my head, what I know? How sick drinking makes me? What if all of the sudden it doesn’t anymore, like the migraines I also mentioned earlier?
I said to someone that the hardest part of all this would be getting through the Detox. After that, I’ll be fine because I’ll know it makes me sick. Will the “hardest” part be the Detox? Or will it really be when I’m able to get out, function again, and enter places where they serve alcohol?
I’m trying to work on that concept now. Along with, “How about sticking your cock or all parts your vulva to the frozen pole along with your tongue? Then you get forced to eat raw sheep innards as well.” Yes. All of that stuff.
If you don’t hear anything further in terms of counting these days, it means either nothing has changed, I’m going through all the above, and it’s probably flat out fucked me over. If that’s the case, let’s hope I don’t find myself near any frozen poles. No matter how much I want to “fight.”
Today, I am stubborn. Today, I am weak. I am stubborn because I wanted get to all of my outstanding blog comments. I am stubborn because I want to write this–no matter how tired I already am, and no matter how long it takes.
I am weak because I am filled with guilt and remorse. Am I also weak for wanting a drink just to make all of this go away? I know, I know. Addiction is an illness. It doesn’t make you “weak.” Having a drink will just make me sick anyway–despite how much it would temporarily ease, or even take away all the disgusting things I’m feeling from withdrawal. I’m still shocked. I thought I would be fine in a few days. And here’s some irony: I’m supposed to be attending two Christmas parties tonight!
But now that I am reliving a lot of things I’ve done when I’ve been totally blasted? If I told you some of them, I’d probably have the entire world reading my blog. Or, not a single person at all. Many of those things were to hurt me. That, I can live with. Sort of. Some of those things were brutal, awful, violent.
Although, what’s really doing me in, is the things I’ve done to hurt others. I can try and heal my own wounds, but is it at all possible I can heal theirs? Even a little? I cannot simply sweep it under the rug and say, “I’m sorry. I was drunk. I couldn’t help it.”
REASON BUT NOT AN EXCUSE!
I live by that credo. Or at least I started to when I got my brain sorted out after so many years. Before that, I would either say nothing about what happened, or do “the sweep.” Even now, no matter what you’re addicted to (and it’s not limited to drugs or alcohol!) I realize that a million apologies or more can never be enough. People have their limits and things get destroyed.
Detoxifying Dr. PA (who is not a real doctor) will now move on to more of the medical aspects regarding this. However, before I begin, a lot of you out there might be completely aghast. Aghast, due to the fact I’m alone at home doing this, and not in a proper Detox Facility. ”Don’t do this at home kids” but I’m safe, I’m eating when I can and I’ll know if or when to get help. This just might take a bit more than a few days. Plus, I found a real neurological gem last night that seriously might help me. Read on…
But before the “gem” I had some other thoughts about the whole allergy/intolerance thing. I remembered I was stung by a bee years ago. I didn’t feel well after it happened. It was during my first attempt at uni so I went to see the nurses. They say if you have a reaction to a bee sting, if you get stung again you may have a more serious reaction. It can even go as far as anaphylactic shock! That’s why I’m extra-mental about bees, irrespective of a phobia to all insects.
I did quit drinking a few years ago as it started to give me migraines. Then, the problem went away after several months. Back to drinking. Perhaps like a bee sting, an allergy/intolerance is coming back in a HUGE way with my alcohol consumption!
Finally, the gem I mentioned above. It ties into all of the up-/downregulation business I wrote about in Detox Day #3.
Last night I was thinking just exactly why do they give you benzos in Detox? Surely it wouldn’t be (just?) to try and calm everybody down! Some addicts in Detox are going insane! What I’m going through? It’s rough for sure, but I’m not going out of my mind 24/7, screaming so loud they have to take me to Detox. So, benzos make Detox easier. Yes, I knew that, but why and how? Quick Google search and answer in two minutes.
I don’t need anyone to sell me some GABA anymore. Benzos knock on GABAs door like an angry mother and says, “Wake up! Wake up! What are you doing in there! You’re going to be late for school again!!! It’s already happened 18 times today! Wake up!”
Long acting benzos are what you want of course, and my Valium is set for the task. Instead of treating my Valium as a prn, I’m going to incorporate it into my treatment to try and get GABA to wake the hell up faster! I can take two a day prn. So really, all I’m doing is making my prn scheduled. prn means whenever you need one!
POSTSCRIPT: Just one more thing I wanted to check out. I’m totally nauseous all the time so regular Gravol/Dimenhydrinate schedule. Guess what? It likes to knock on GABAs door as well.