Archive for August, 2013


…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.

BUT.YOU.ARE.NOT.  

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

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For some strange reason, my mobile decided to stop syncing.  Everything.

Some stuff wasn’t that important. However, a few were kind useful.

LIKE MY EMAIL AND MY CALENDAR!!!

OMG.  I put reminders way ahead of time for things.  Then I’ll put a reminder for the same thing a bit closer to when it’s going to happen.  Why? Because my memory barely exists and I can’t even coordinate a bowl of cereal.

I got a reminder to see one of my doctors in two days.  I never got the first one!

To hell with the cereal! Could I get a booking for Accessible Transit? So lucky.  The timing was all screwy but I didn’t care.  Just get me there!

Email.  Once I finally, finally fixed the sync? HUNDREDS kept pouring in as it cycled through all of my accounts.  I’m not joking!

There are so many because I have no clue when my mobile went on strike, “Declared Mutiny” whatever.  I hadn’t done anything mean to it!

And that’s the worst part.  The emails are all dated from… O.o

Yesterday I started to resume my fully increased dose of Lamictal.  I don’t feel sick.  Oh, no.  I feel just fine.

Also, there’s something going on in non-PA Land that is extremely important.  It requires the majority of her time and priorities.  Sorry PA Land, but priorities?

Priorities.  Oh, maybe let those hundreds of emails wait too?

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This was Day 3. Hoping I could stop seeing triple but actually a lot more.

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:

Current Doses:

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!

Because…

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!

KABOOM!!!

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*