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.
I’ve had this idea for a long time. To share with you some fine,
tasty, delicious and awesome meals I have created at times (and will continue to do so.)
Actually, I really enjoy just throwing a bunch of stuff together (when I do cook) and see what the end results become.
I’m not sure if they end up going straight into my mouth because they turn out so well, or straight into the trash because one molecule on my tongue makes me instantly want to barf.
Has there ever been an in between? Something barely tolerable? I guess I’ll have to pay more attention to that if I’m going to start blogging about it.
I just made something now that was definitely experimental as I have no food in my house. Or barely any. However it’s cooling so I don’t know any results yet!
So stay tuned? For when I do cook? Although I might be able to recall some things I’ve made in the past.
Posted via WordPress for Android. Let’s see if it actually works.
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.
Someone said that to me several years ago. After being involved (so closely) for those several years. Ouch. Boy. Did that ever hurt. However, less so over time.
I think you can guess that was when things (sort of) started to “shift” a bit? I Can’t Keep… Nonetheless, things carried on because the relationship was so incredibly special and we had such a strong bond between us. Later, it took a HUGE “shift” to end it all.
It was sometime afterward that phrase didn’t hurt even less. I took a serious personal inventory of my life. How many people was I looking for to fill “empty holes” in my life. Needing healing, someone always being there to support me and love me, running away when trauma overwhelmed me, then coming back so full of love. It became so confusing to said person above.
Did I do the same with others? Fill their “empty holes?” Maybe. Probably. I’m pretty sure, definitely.
Apart from SO many reasons this can happen (and not just to/for me?) I’m going to talk about being a Womb Twin Survivor.
When you lose a twin or more (I’m a multiple–I have four) there can be massive problems with relationships. Of any kind. Losing your Twin (and seriously in the Womb!) has the capability of really fucking you up in this department.
Believe it or not, embryos develop attachments to each other very quickly in the Womb (or anywhere else where they can try and develop.) Maturation of an embryo happens FAST!!! Trust Dr. PA and her own Medical School Textbooks on that one. Neurologically? You do “know” that someone is “there” with you. Then you “lose” them.
You’re already traumatized before you’re bloody born! Seriously! Now THAT is one HUGE “empty hole!” Are you starting to get the picture? Or at least part of it?
Basically, how the theory goes (but it happens enough to be a Golden Rule) is Womb Twin Survivors can repeatedly try and find their lost Twins wherever they go, with whomever they travel, throughout all their lives.
AHA!!! So it’s not all of the trauma I went through after I was born!
Uh, why don’t you forget the Albatross and swing an Elephant around my neck! Does this just add to things? I really don’t know. I can’t tell. But I asked my Twins for some guidance on the issue. Yes, I speak to them and I hear them back. I see them, they’re all separate individuals with different personalities…kind of like a DID thing but not really.
Anyway, it is/has been suggested when you are doing a lot of hard work to deal with more than this, you perform a “letting go” process. Kind of like a ritual, perhaps? I didn’t want to! I love my Twins and they love me! They help me with a lot and I said to them, “I don’t want to get rid of you guys! I don’t want you to go! Do I have to let you go? I don’t even know if I can!” I was almost bawling.
Melissa is a BULL=CHINA=VESUVIUS. She said, “Fuck that! Who says you have do something, just because they say you have to! Also, who else out there is the same as you!!! Who else has multiples or even one twin that they can speak to for guidance or a simple chat or what the fuck ever. YOU DON’T HAVE TO DO SHIT!!!“
Alrighty, then. I “DIDN’T DO SHIT.” So I said, “What am I missing? You guys are all here. I know all about you. If so, what am I searching for? What is lost? What am supposedly, constantly looking…for?” They said nothing. We’re all here.
I see. Well, I trust the hell out of them. I trust the hell out of my Therapist too!
I think what I need to do is get off my lazy ass. There are ways that I can fill my “empty holes” as well. No matter how goddamn crazy I am, and what I do, and have done! Sometimes those things can affect me as they are part of who I am, but as excuses?
Then they’re just empty holes as well.
The very last. I’m in serious trouble.
I am a masochist but I can’t keep asking for Domination here anymore. It’s like I’m killing myself from the outside in. I might as well be. Both physically and emotionally but my body is the big one.
Why do I drink? No. Me. Personally.
A minute trigger in some cases; others glaringly obvious make me run to the bar. Doing something really painful, feeling like I’ve done something really painful. Vice versa with someone or any kind of thing else that shoots back to me? Any PTSD trauma problems that appear small in the distance but actually are quite large as I travel along the road. Usually things that are massively due to relationships!
Those of some of the more “negative” reasons. Then there are some of the “positive” ways.
Simply enjoying the feeling of relaxing with a good book and a drink in a bar. Going out and working on baby MacBook or writing–being productive. That one can also come from boredom and cabin fever, but it’s true. I do become more productive. Another one in terms of being productive, is if I do a lot of work around the house? I go to the bar as a reward for all I’ve accomplished.
I could list a lot more of both!
I used to think I was only a “psychological” drinker. My body wasn’t physically addicted–and it wasn’t! I never showed any signs of physical cravings for it. It was always to do with the above. So I spoke to Sweetie GP and my Therapist regarding that fact (and a 20 year out of control self-medication history of drinking.)
That started off as a football kicked across 11 stadiums or 18 pitches. Pick your country and/or game you like best. I enjoy footy far, far more that “football!” I actually do. I swear!
A constant Merry-Go-Round of discussion was the result. Social vs. Abstinence? Try both? Only Abstinence will work? That really was a Merry-Go-Round. None of us had a damn clue what to do with me!
Serious trouble? I had to do something that really hurt me recently. I don’t know if it hurt them. However, I was agonizing about it! I didn’t know how to do it, what to say. I was having continual nightmares about it all. I still had another one about the person last night. So of course you know where I went afterward!
I’m once again D/W. For those that haven’t picked up on other posts relating to, I shortened Detoxing and going through Withdrawal to that.
I think this is the third time in my own little “Hospital For One” I’ve done this. It’s more comfortable here, surrounded by all of my things in my own environment. Uh, yes? Certainly more than the time I spent here.
SERIOUS TROUBLE. With each successive D/T, and it doesn’t matter how little I drink, how long in between I take breaks, I am now in perpetual cycle of having to go through it every time. And much worse, each time the perpetual cycle continues, going through it is MUCH WORSE than the last time.
I am so, so sick. I can’t believe what is happening to me right now. I’m not even going to write about it. I am killing myself from the outside in.
For you other substance users, I can’t tell you what to do. I can’t preach to you based upon this. However, PLEASE try and get clean.
I’m going to have to do everything within my power to stop drinking. Sure. How many times have you heard me say that before? No. I’m SERIOUS this time.
I can’t even believe I managed to seriously put this post together.
So, even though we’re all different, why should I not be so different? “Let not our differences separate us!” Or something like that. Maybe someone even said that at some period throughout history. Just with much more eloquence.
I also wonder a lot why the posts aren’t so “different” on their own. It’s like a 50/50 division has been made. It’s either, “Christmas is going to be so Jolly and Gay (not in a sexual way, but…well…?) Then, it appears to be the exact opposite. The other side find Christmas absolute torture! Completely abhorrent! They’d run out and start committing arson, except they’re lying in bed, too depressed to move.
I believe in both. I don’t judge either. I see both. I might have even participated in both. However, you’ll find me in the latter camp. Christmas and I aren’t exactly good friends. Even acquaintances, for that matter.
Sometimes I’ll know it’s going to be bad in advance. Sometimes I actually know how really bad it will be in advance. It’s the same with a sort of feeling like being ambivalent. Other years, I have no idea what will happen until it just hits.
This year? Oh, fuck me! I think I knew it was going to be UTTERLY, PAINFUL AND HORRID, in the bloody summer! On top of THAT, I’ve started experiencing PTSDTraumaChristmas weeks ago!
They never did this during the last two years I’ve lived in my apartment, but they have a bunch of Christmas lights strung all across our floor’s adjoining patio. I simply thought they were broken. SURPRISE!
They’ve had them on every night for I don’t know how long. Wonderful! I can’t even look out my window now! But I can’t not look out my window as I need to orient myself in terms of space, time, proximity and other physics type stuff.
Hey, I even have a little, red, flashy one in front of my apartment’s window. Great! PTSDTraumaDiscoChristmas!
Tomorrow is Christmas Day in my part of the world (space, time, proximity hehe) and my presence is immensely requested at a party.
If I don’t show up, there will be hell to pay! It’s also going to be HUGE. There goes the sobriety I’ve been working to control. Well, it might make Christmas a bit more Merry!
Until the day after. Boxing Day. I’ll want to squeeze myself into the smallest box I can find, yet still manage to defenestrate me with perfect accuracy…
Right into the middle of the biggest snowbank I can find.
Ah, well. And so it goes. Make it through the week until New Year’s and it’s over!