Archive for the ‘Meds’ 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.
Lots(?) of talk about suicide and me offing myself if “it gets too much?” What I recently said?
Fuck off PA. Didn’t you learn enough from the last time? What impact it had on so many people?
Well, I was strongly reminded from a friend overseas about my epilepsy, trying to sort out its nightmare, learning today that my Creatinine levels are now “a bit off.” Creatinine has everything to do with your kidneys. More labs, ultrasounds etc…
I’ll probably be okay. No, I will. No, maybe I won’t. But it’s still pretty ugly just thinking of it along with everything else.
NEVER in my life have I had a problem with Creatinine. Well, duh. I’ve never had problems with anything remotely to do with renal system. I’m now counting how many of my bodily systems are falling apart (or at least being affected.) And sorry to repeat myself folks, losing the Clobazam is why. Sweetie GP and I agreed, and started the list ages ago.
Well, so be it. But me committing suicide is NOT an option.
I made some Tweets earlier before my mobile died while out reading (escape my home while going mad!!!) I basically said such, and I need to make the most of my life–even if it is shortening. I need to get back to seeing all the beauty there is in it; whether I seek it out or it simply appears out of nowhere.
However, I still need to make up my will and directives. No, really. I do. Even if I died in some freak accident. Everyone has to have a will and their directives! Otherwise, your life as you KNEW it will be destroyed just as much as you’ve been destroyed.
Another thing is that we have amazing hospice care here. If I’m doing a slower version of the “Kansas City Shuffle” they’ll make me so comfortable (i.e. drug me up with such high degrees of opiates) I’ll just go to sleep. Peacefully.
And it will be peaceful for everyone else too. My slow dance will give everyone (including me) lots of notice so we can deal with it together.
Now? I just have to remember this and keep it in mind. Right at the forefront.
Sorry. Not exactly a bad pun. Freudian slip? Or just bad choice of wording.
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.
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.
I’m surprised I’m actually writing this right now. I did the dishes and it basically sapped me of all energy. I can’t find my brain. If it’s still in my head, it may start seeping out my ears at any moment. But I’m restless. I can’t find my brain. I’m restless. I can’t find my brain. I’m…
I think the only way I can actually pull off writing this is by being a total med geek. However, after this? I might need a Valium to settle down this RESTLESSNESS!!!
First, no DT activity. So my theory about my meds helping me getting over that and even helping me get through this could be right? How many people in detox take all of my meds! This is all going to be “theoretical.” But look out for up-regulation PA! Does anyone have some GABA for sale? Read on…
For those of you who missed my rather “excited” Tweets last night, I got shot like a rocket into a Bipolar hypomanic spree. Thank god it was euphoric.
Anyway, what’s happening is that there are basically five big neurotransmitters involved, as far as my withdrawal. These would be: GABA, Glutamate, Norepinephrine, Dopamine and Serotonin. Downregulation means this: they had raised my tolerance, but now that I’ve quit drinking, GABA has taken a huge nosedive!
Then, we have up-regulation. That’s what was going on to raise the tolerance too. However, while I’m in this state, they’re all still in up-regulation mode. Situation normal (more or less?) This ties into your sympathetic nervous system being a wreck, it leads the parade of neurotoxicity…but hey! You’ll be alright!
This would precisely (well, theoretically) explain my Bipolar Euphoric Trip to the Moon last night. I’ve got too much Serotonin in my system right now and I can’t take Antidepressants regarding my Bipolar.
I’m not sure if anyone’s noticed but there’s been a little bit of talk around here about being an addict (me=alcohol.) That was on Twitter. Then I mentioned it to a commenter here. I apologized if I made the person upset, but I call things as I see them. The proof is in the pint: I just said I am an addict as well.
*takes deep breath and exhales*
Speaking of deep breathing and exhaling. I need a cigarette. I can’t believe this. All of it. Day #2!
Okay. First the medical. I have read about this before, but based upon what is happening to me now, does it apply? Semantic debates. Alcohol Allergy vs. Alcohol Intolerance. Well, call it what you will, but as far as I’m bloody concerned, it’s the same damn thing!
Never before. When I drink alcohol, and not even much, I become unbelievably sick. No. Really, really sick. And it happens while I am drinking. It’s now progressing to drinking even smaller amounts. Obviously, I have to stop? It’s like someone managed to slip some Antabuse (aka Disulfiram) into me behind my back!
Three nights ago, I had only two bottles of beer in my fridge. I decided it was time to do it. While I drank them, I wrote notes all along the way. I want to post them all on my blog. It will have to be in a series. Lots of writing.
Now, today. A lot of shit can go on when you’re trying to quit drinking, but I think I’m probably going though another Typical Absence Status Epileptics round. That can make things harder to discern. But this? NOT Typical Absence Status Epilepticus.
I had a good dinner last night, had breakfast today, as I’m trying to get my body back in shape. I felt fine. I was not prepared for this at all.
Oh, dear god! I’ve actually got Delirium tremens. My hands are shaking (or maybe a bit less now–I’ll get to that.) Shortly afterward, holy shit. Another “never before!” How do I explain this? I couldn’t bear being in my skin! The feeling of being in my skin! AHHH!!! Let me out! I can’t stand it!!!
I held on to my bottle of Valium for about five minutes until I finally slapped myself (not literally) and said (not out loud) “This is why you’ve been prescribed them dummy! For anxiety! Take a fucking Valium!” I’m still pretty freaky. You also treat people quitting booze with benzos anyway!
A bit all over here, but the DTs can mess with your heart. I’m okay. Resting bpm not throwing me into Tach. Maybe that’s the Valium calming me down a bit. And my hands too. They’re not so shaky anymore.
Finally, as I mentioned with my hands up there? All of my friggin’ meds may actually help me with this!!! More medical mumbo jumbo about cellular up-regulation and downregulation, but my Anticonvulsants (and my Atypical Antipsychotic) are involved with the neurochemistry. That could “homeostate” me faster (sorry, I wanted to make up a word.)
Fine, I’m on Biphentin as a stimulant for my ADD, but really. Three ACs plus one AP can beat that. I sound like I’m playing Poker with all of my meds.
So that’s where I sit right now. This has taken a long time to compose. Should go. Not feeling so great. This is harder than I thought it would be. Way more. For some reason.
Thanks for reading everyone,
Neuro lowered my Clobazam from 100mg to 80mg. Right now this is the first “test drive” for the Typical Absence Status Epilepticus. I can only work it out every two weeks. Because that’s when it rears its ugly head.
I don’t want to blog about being sick anymore but I’m going crazy. I’ve been hiding it. Of course. Keep wearing that sane face.
I’ve been scratching my head for the last while like there are bugs all over it. Scrape, Scrape, Scrape…
Nightmares. I’ve also cried daily since this first test go ’round. My Asperger’s has exploded! My brain is screaming. ”Where did that other 20mg go!!!”
Med changes are always (or can be) insane but this is a “Special Case.” Very. I’m on/off. Feeling alright but then pretty crappy.
And this is bad. Very bad and I know it. It’s like those bugs on my head.
The only way I can deal with all of the shit in my head is to drink. I know.
My functionality is so messed up, I actually questioned when going out, am I craving alcohol? No, no. I don’t…never have…
At least only that one minor seizure. It’s just psychologically and emotionally things are way, way out of control. Oh, and other physical ickiness. Goes with the territory.
As always, open and honest posts on PAs wee blog.
Fuck me. I’m like Amy. ”Rehab.” But no. Even though I am an alcoholic, not nearly as heavy a drinker like I used to be years and years ago. And that is NOT denial. I’ve cut way down. WAY down, and not every day etc. But now? “What time is it? Time to go to the pub.” Where I AM functional. Oddly, ironically, I have no clue. Neurologically in a very odd way? Theories of my own there.
So, I’m in a state right now. Clearly. I am now pulling at hair.
This won’t last. It can’t. Unfortunately, and not the best way, the only way I can get my stupid brain to shut up is have a few drinks. Basically, daily. Not my intention. Not in the least.