Archive for the ‘Harvard’ Category
Many of my old readers know this story but they still might be interested in this disaster for me a second time! It might destroy all of the hard work my Neurologist and I have been working on for six months now. Intensive and over the top levels of two of my other Anticonvulsants–plus the one I lost. The doses are SO high, people think it’s practising irresponsible medicine.
No. It’s been the last and only chance. Throwing a dart at the board blindfolded.
To everyone’s surprise, I have been seizure free since the beginning of August. Here, it is mandatory for a doctor to report even one seizure so that a person can no longer drive. If you have zero for a year, you can drive again. I know I’ll make a full year. Unless this happens?
The drug I “lost” and had to quit cold turkey was called Clobazam. You NEVER quit a drug cold turkey unless it is a medical emergency AND under medical supervision. I had no choice. For the first time ever in my life, I was told drug manufacturers could no longer supply pharmacies with certain medications. I had never had a problem with that in my life.
Losing the Clobazam damn near killed me. It completely eroded me physically and mentally because first it was gone. Then, when I could finally resume taking the drug, it had lost some of its efficacy. Thus, I remained undermedicated until last July when we slowly started to fix me up with massive quantities of Anticonvulsants.
There is also a VERY important note I would like to express here. In fact, pound it into every doctor who believes in substitutions for Clobazam and possibly other medications. Big Pharma and the Government will come later.
Clobazam falls under the category of Benzodiazepines. However, it is a specialized one. It is one to treat epilepsy and epilepsy ALONE. Every Neurologist and even Pharmacist knows this fact. Moreover, it is SO specialized, it is primarily used for Catamenial (occurring during Menses) epilepsy and migraines.
If I lose this drug again, it might not work for me ever. Again.
So, there is some background material. Why is it so relevant? I would now like to draw your attention to some very important reading. You might not care to read it as it’s rather devastating to me. The links occur in a chain-like fashion. That’s how I’m going to end this with Big Pharma and the Government. If you don’t pause to look at everything, the chain of discussion could perhaps lose sense.
Epilepsy Ontario is a wonderful site. I’ve actually written for them but don’t let that mean I am biased. They also have a wonderful Newsletter you can subscribe to if you’d like, their website is chock full of information. Due to this, I might be able to re-work my last piece I couldn’t write before!
Nonetheless click on that link. That now has me quivering in my boots. Everywhere else too. Needless to say, I’ve already contacted my pharmacist!
Now have a look at this. What’s listed right at the very top of EPILEPSY TORONTO’s website! So, we have Local and Provincial Awareness, Support and Notification. Sniff, sniff. Anyone smell something funny?
National. Unless I’ve suddenly been struck blind, I see no mention of Drug Shortages or other problems anywhere on this site. What I do see is a lot written about raising money for support and the word “Research.” That’s rather interesting.
One needs to take Anticonvulsants (or rarely others) for epilepsy. If research is being done regarding medication, who manufactures medications?
There is also a nice little tidbit regarding concerns about Animal Testing (but nothing about epilepsy.) If you would like more information about what Epilepsy Canada is doing, or the guidelines for Animal Testing in general? Who do you contact?
Canadian Council on Animal Care
1510-130 Albert Street
Ottawa, ON, Canada K1P 5G4
That is a branch of the Federal Government of Canada.
I don’t think I need to sum (Big Pharma saving money as well as the Government) things up any further. You can all get the picture now I believe.
My mobile has totally been fucked up. Not nearly as me though!
I wrote a post to try and test my WP app here as I think I finally fixed things after messing around with it for so long.
I said some other shit about other fucking shit but my night meds are now hitting me like a cinder block truck. And I’ve taken them. Because I hit the wrong button and wrote my post as a Page. *laughing*
Too bad. It was kinda good. Good in a point I’m not dissecting every single thing about my med change right now. Tossing loads of verbose minutiae all over you.
However, nothing to say at the moment. There you go. I have my period and some stupid virus. So I don’t piss from chicken soup.
I’m so gone I can’t even see words now. So back to the damn test for crissake! Then I can quickly decide what sleep position I want for the night.
Posted via WordPress for Android. Let’s see if it actually works.
Harvard went to see Non-Arsey Neuro a while ago. The appointment was a real rush job.
Not so much because of Harvard’s head, but a form for the stoopid guvmunt that needed completion–then mailing ASAP. He was the only doctor available on short notice. Nonetheless, we still talked about Harvard’s head.
After so damn long, Harvard has been working on the huge med changes, adjusting here, fiddling there. She only contacted Non-Arsey Neuro if she needed him for any serious challenges. Which were perhaps a few? Then, just pick up a phone to chat, or leave a message stating what was she’d done.
At that appointment, Harvard reviewed all her current changes. Most particularly, her divided dose in the afternoon where she had made no further changes. She was merely sitting at that dose, awaiting any possible issues. The med changes have been so high, a divided dose was definitely required.
Non-Arsey Neuro wrote a new prescription (including that divided dose) for one month. One month. Our typical two Neurologists meeting to discuss a “case.” Harvard was doing a “wait and see.” Non-Arsey could have been asleep and written it on behalf of what Harvard said.
Oh, Harvard! You have waited too long! Change that one month order! Not that it matters. She has million pills of everything lying around from making so many changes.
One of the reasons for the astronomical increases of Harvard’s Topamax and Lamictal, was to try and squash the mood changes (that were beyond astronomical compared to the increases of the meds.) Slowly, slowly, slowly…working! But still a long way to go.
A lightening bolt of terms of working? No more seizures at all after a month–and no more since! Almost six months now!
But the moods. And Harvard now being in total shit.
Things were okay. Or so Harvard thought. Or really, the most plausible answer is that the dose chosen worked fine for a while, but then BOOM!!! It took time for things to catch up. Moreover, a slow graduation to the BOOM!!! is in our own minds. It’s like things build and build until they become a volcano.
That’s what happened to Harvard yesterday. She was being a little too productive? And a few days before?
Last night. BOOM!!! The “Revelation!” Harvard was Manic, somewhere between Jupiter and Saturn! Then she crashed after shutting down her computer and fell into a Mixed State. Then a Dysphoric Mania. Her Valium didn’t even hit a single neuron.
Harvard goes to bed, thinking it’s an isolated incident that was really bad. Everything will be fine tomorrow. Harvard wakes up like she’s taken an overdose of her ADD meds, plus an overdose of who knows what else! Wide opened eyelids and speedy, speedy, speedy, speedy!!!!
Harvard was going to wait but apparently this isn’t going to stop. She’s been here before. When this happens, the absolutely worst thing she can do is “wait!”
She’s cycling like crazy, but has meds at her disposal that can try and stop it! If not, she can clearly get herself into all sorts of trouble! And that she has! Plus, she’s just stopped drinking! Let’s destroy THAT plan!!!
She’s also going to titrate of course. Harvard’s not stupid. That’s why Non-Arsey Neuro gave her full control to tackle this from Day One. He’s not available now. She’ll call him later.
POSTSCRIPT: Harvard’s already feeling like getting into trouble. Going out in bad weather on her own to mail some gifts to people. One is REALLY heavy and then going on a SHOPPING SPREE!!! Well, there’s always online shopping.
You see? When this happens? She can get in lots of trouble in LOTS of different ways. And online shopping is nothing compared to some of the things she’s done in the past!
Now, she knows exactly what she wants to buy online. It’s something she’s been lusting after for SO long! A book. A big one or something decent. Containing loads and loads of the person’s work. Her Idol!!! Lee Miller!!!
Non-Manic Statement: Harvard thinks she has a bit of Lee in her. If another photographer looked at some of her shots and agreed? She’d drop to the floor in a second. Especially with the titles she’s given them. That combination was very typical of Lee. What she shot, the twists she turned around with them, and played with them–and definitely her choice of titles.
Yep. Lots of reasons but I’ve finally peaked. Or sunk. Rock Bottom.
Emergency trip to Sweetie GP tomorrow. She knows I hate hospital, but she also knows, I know when I need to go. I never go. I’ll be fine.
Well, she’ll be in for a surprise–and not a good one. I don’t know which will make her my roommate on the ward first. The fact that her Star Patient can’t even manage to get herself willingly to hospital? Or all the shit she’s been doing recently. Very recently.
That could have possibly killed her? But she wouldn’t have known. Passed out. Too drunk.
This is the first time (barring the first) I’ve been scared to go to hospital. Actually, I think it’s worse since I’ve had so many after the first. I’m terrified. A bit? Yeah?
Because I have to confront something that has destroyed so much in my life. And I’ve been in denial about it for 20 years.
probably definitely made me more sick and more crazy with every diagnosis I have.
P.S. If I can swing it I found a form to get to greatest place I ever stayed. Maybe Sweetie GP can push for it.
P.P.S I did manage to call Non-Arsey Neuro and explain. It’s not what Harvard has done with her medication work. Her moods have been fine and still no seizures since the beginning of August. She explained everything and the most important (which WILL be on the form!)
Don’t fuck with this patient’s meds! We’re finally making progress from debilitating epilepsy, for two years or more or whatever. I’ll be screaming, “CALL MY GODDAMN NEUROLOGIST!!!”
So sorry haven’t been around much. Too busy destroying my life again.
I hope I can get in soon. Can’t believe I’m actually saying that about going to hospital. PA=TROUBLE.
Wow. Surprised I could write this but I have to get my brain going. Fight or Flight? Or Fright.
Yes, quite a title that. Not enough room for all the really insane things I’ve been doing straight since the morn’. I want to sleep. Right. Sure. I want to stop shaking. Valium?
Breakfast: A tin of fizzy water, Gravol and cigarettes. Oh, meds too.
Lunch: Valium and cigarettes.
Have I reached a breaking point? I’ve been crying about it before. Now I just can’t stop. My T-shirt is covered in so many tears, it’s actually making me cold. Turn up the heat.
The first phrase is true. I’ve been that way for a bit, but it’s been increasing exponentially. So much, that I haven’t even left the house for almost a week. I think I’ve changed my pyjama bottoms.
Because, that’s almost as long ago as when it happened. And I can’t hear back from them. And now I’m so unbelievably, incredibly upset to turn on my goddamn mobile when its battery dies, because I KNOW there won’t be emails, txts, anything.
YES!!! HATE ME LATER if you read this, but I lost it somewhat less, when I unconsciously realized it a few days ago.
The first time I “was on the other end of the ca…” BUT DON’T YOU DARE SAY I WASN’T UPSET TO BE THERE!!! YOU CAN HATE ME FOR THAT, BUT I’LL HATE YOU RIGHT BACK!!! I NEED YOU TO CALL ME WHEN YOU’RE IN TROUBLE!!!
…i was only reminded of the times i did it to so many others and felt like total shit and…(oh, dear god, the one in the other country! now i know how you felt! this person is in another country too! i wish i could tell you, the one who…) *filled to brim with different kind of pain*
I got a txt. 1.5 hours of (whether you believe it or not) “psychic” and other psychological means, of getting a friend through not committing suicide.
The psychic stuff would be a whole other post. I still may not be able to prove it to you, but ever since I was a wee sprite! The stories I could tell you.
It worked? As far as I can tell. Some stuff taken but not enough for an OD. However two days later, just how part of the communication has always worked for me. I missed something over the phone! Dammit!
As mentioned above, this person is not in the same country. I cannot reach them. At all. Period.
This person needs time to recover after overwhelming and traumatic events. This I know. This I also know: it has been the longest length of time where we have not been in contact after they taken time to recover–at least to say something. Although, I would say THIS event would be considered VERY traumatic?
I also know what this person says too. Every single time they are gone to take a break and recover.
Even with a plethora of a plethora of emails and txts I sent, HATE ME FOR THOSE!!! HATE ME BY OVERLOADING YOU, BY CHECKING ON YOU EVERY DAY AND TRYING TO FIND YOU SOMEHOW!!!
This person may be ignoring their mobile and email altogether. Or they may not have access to them. They may not have seen anything I’ve sent them. I’m trying to be patient but waiting this long? SO OUT OF MY MIND!!!
As this person would say, something could be “jamming the signal.” I keep getting a read on the status (alive, dead, hospital?) Then I’m wrong, back to another, or another, or just a blank slate. The twins are either right with me, saying I’m perfectly on target, or lost altogether themselves.
I’ve even given up trying to hone in; asking the twins for their help. But my mind won’t let me! I keep going back. I do keep trying to find or feel something.
Maybe I’m not strong enough, or it’s all too far away–even something jamming the signal on that person’s end. Again, trust me. You get TWO highly elevated psychics together (this person more than me though) and it can be pretty powerful. Not to mention, as far as I’m concerned, too many links in our lives alone that would perfectly balance a seesaw.
Welcome to my headspace right now.
I’ve crossed a bit of a boundary. Maybe more than a bit. Although it might get me an answer?
OH!!! HATE ME FOR THAT TOO!!! HATE ME BECAUSE YOU WILL BE SO MAD THAT I’VE DONE THAT??? WELL, HATE ME FOR LOVING YOU THAT MUCH, EVEN IF YOU THINK IT’S SELFISH!!! IT MIGHT MAKE YOU HATE ME SO MUCH YOU WILL ACTUALLY SPEAK TO ME!!!
This person knows I was going to do this so they ran interference? Bugger!
Whatever the answer, it’s okay! It’s perfectly fine!
I went so mental with all of my diagnoses in the ugliest Easter Basket you’ve ever seen (aren’t they all ugly?) I ended up in the ICU for several days after attempting suicide. Who the hell drew the line there to say yay or nay? I was in a coma after all that time! That’s a pretty bang up job! OD Grade… An A- perhaps?
This person’s clearly gone MIA, my brain’s clearly going (if not already gone MIA.) You already know what’s gonna happen here.
This has taken me right up from the beginning of sunshine to my actual divided afternoon dose of meds. I don’t they’ll make stable as they had been doing before. MIA? Combination of PTSD, Dissociation and total Mania. Oh, the Agoraphobia too. I know the Asperger’s is waiting in the wings. No. here now. Rocking, rocking… Done. Click.
I “think” I’m feeling a bit better than yesterday. I’m telling myself that title, “This is a bitch!”
I’m trying not to get all of my fucking diagnoses get the better of me. I’ll blow up and it will be time to say, “Goodbye, PA!” Nothing’s triggering me at the moment so that’s a good thing. I think my brain is more concerned with my Neurochemistry. That is also a good thing!!!
Should anything trigger me, I think I could handle it despite Neurochemistry or anything else. After all, it was several triggers that made me drink so much. So much, to get me into this situation of, VERY, UGLY WITHDRAWAL!!! Even more so, I think I might know more about those triggers–not just things that happened on a “surface level” I suppose you could say.
That gives me even more ammo in case anything threatens to make me fall apart. THAT IS A VERY, VERY GOOD THING!!! I can’t guarantee anything here, but at least feeling like this is hopeful? *shakes head and sighs*
I think food helps. Gee. Really? I had a breakfast, cereal bar earlier. Now I’m going to try and shove at least something else into my mouth (and swallow it.)
I actually HAVE to go grocery shopping today. That will be a huge slice of hell!
I had a friend (he’s dead now.) He ALWAYS used this expression: “If you do the crime; you pay the time.”
Words of wisdom.
I was complaining all over Twitter about wanting to make the world shut up so I could crash. Nope. Sorry. This post just has to be written.
I’ve been feeling a bit sick lately. Nothing that’s really knocking me out. I’m just tired all the time. A lot of “fatigue.” I’ve even been running a “fever” on a couple occasions. It wasn’t that high though. I’ve also been getting these “headaches” at night and intermittent “nausea.”
Harvard’s been busy with a lot of changes. It’s amazing that she’s been seizure free since the beginning of August! However, the damn moods!
10 days ago, she dropped a huge Topamax bomb on her brain because the Lamictal increases weren’t working. Bomb? Can’t suffer in manic hell because that’s a huge part of this post!!! The moods desperately needed a massive counter attack!!! They were part of keeping me in this cycle!!!
I am now, (PLEASE, HELP ME NOW!) going to stop drinking!
I was looking in my journal the other day (which I had stopped writing in altogether–that tells you something) and I was astonished. Day after day after day…I had no clue. It can’t be social either. Abstinence.
I remember I made it between 30-45 days or something, quite a while ago, months ago. That felt pretty good. Longest period in my entire life.
Oh! I almost forgot the part about being sick! The “fatigue” and the “fever.” The “headaches” and intermittent “nausea” too. I’m (presumably) going through alcohol withdrawal. Those are all on the list.
It all makes sense medically. Alcohol lowers your GABA and glutamate. It doesn’t matter when you stop, or how much you drink. Then your brain needs to readjust those two neurotransmitters of this one and that one. Establish equilibrium.
Well, how do like me now! With all the med changes, higher levels, the big “Harvard Bomb” 10 days ago. Irrelevant, but I haven’t had a drink in two days. My brain has now become a book where all the pages are black.
Apart from the medical, I’m not physically addicted. It’s all about the psychological. So ANY of my diagnoses can make me run straight for the bottle! That’s tough. Since I’ve got so many diagnoses! *rolls eyes*
Now, Harvard gets to treat this as well! *laughing* Two Diazepam daily (actual prescription is such prn.) Ibuprophen for fevers and headaches. Gravol for nausea. Fatigue? Nothing I can do about that one!